UTI or bladder cancer? [Archive]

cattia

09-03-18, 18:55

I went to the nurse because I was having constant pressure and need to pee but no pain or stinging on urination. She tested my sample and it has blood and protein but she didn't say if it had bacteria so I am completely freaking out that I have bladder cancer, especially as I have been having random pelvic pain for a while. She has given me antibiotics and will send the sample off for analysis. I don't know what to do with myself I've gone into full on meltdown. I just need some tips to calm down.

nomorepanic

09-03-18, 19:00

Not sure how you have jumped to the conclusion it is cancer without thinking of just a good old UTI first which is the most likely scenario.

See what happens now you take the antibiotics.

cattia

09-03-18, 19:05

Probably because I know from reading other people's posts on here that blood with no infection is a sign of bladder cancer, and she said blood and protein but didn't day bacteria so I'm thinking there was no infection. But to be fair I do have uti symptoms. It comes on top of a week of meltdown about cervical cancer, I can't stop crying at the thought of my kids growing up without me, it's ridiculous, I really hate myself sometimes.

jrcoleman

09-03-18, 19:12

I think by giving you antibiotics, the infection was implied.

Fishmanpa

09-03-18, 19:17

I can't stop crying at the thought of my kids growing up without me, it's ridiculous, I really hate myself sometimes.

Hi Cattia,

My goodness, you've really been through it! From your very first post too! (http://www.nomorepanic.co.uk/showthread.php?t=72828)

I do hope you find some peace with the dragon. He's been breathing fire down your neck for a very long time.

Peace and as always...

Positive thoughts

cattia

09-03-18, 19:59

Thanks guys. Fishman I am now in counselling, not been going long but I consider it to be a long term project! Honestly before I was on this board I was on others. I know I have to try to crack this one way or another but when it kicks in it's hard to escape.

nomorepanic

09-03-18, 20:01

cattia

09-03-18, 20:06

jojo2316

10-03-18, 13:23

Oh Cattia- I’m so sorry you are having a rough time at the moment. Health anxiety can be so cruel and relentless. Firstly, it is HIGHLY UNLIKELY you have bladder cancer. For our age group it has a rate of just over 1 per 100,000. That means it is extremely rare. Also infection causes both blood and protein in the urine. Simple urine dipsticks don’t detect bacteria.... that would involve a lab test. So all the evidence points to an infection. None of the evidence points to cancer. Hang in there. This fear will pass
Xxx

MyNameIsTerry

10-03-18, 13:33

Thanks Nicola, I know a couple of people have had scares so talked about the symptoms but you're right, I haven't read of anyone actually being diagnosed. I have ghe antibiotics now and have taken the first one. I've got a lot of dull lower abdominal pain so maybe that does indicate infection, I hope so!

The nurse would know more about the possibilities of bladder cancer than posters on here and she would also know the many other possibilities, including infections, and posters here will be focusing on their fear whilst lacking objectivity.

If the nurse suspected cancer you would be fast tracked for testing. I suspect she would have had to ask a GP at the surgery too about the course of action. The lack of any of this suggests she isn't concerned so see if you feel better in a few days from the antibiotics which certainly wouldn't work on cancer (if they don't that still doesn't imply cancer, just more treatment needed).

I'm sure you know all this but your subconscious is giving you a real kicking and you are struggling with how this makes you feel. Try to distract yourself from periods of too much thinking time. Reduce time where you can focus on feeling unwell. Our focus on any symptom definitely makes them feel worse, I've always found this, and there is relied to be had in shifting your focus slightly away.

cattia

11-03-18, 12:09

cattia

12-03-18, 12:01

I'm now totally freaking out about interstitial cystitis. I'm needing to pee every two seconds, it's a real feeling of pressure. I'm on day three of antibiotics and I haven't even had my results back from my urine sample so I don't know for sure if there's even an infection. I'm totally losing it thinking I'll never be able to go anywhere or do anything ever again because all I can think about is when I can next use the toilet. I also feel like there is still some irritation at the end of my urethra after urinating. I'm so scared and upset about this, and about being in yet another anxiety spiral that I can't get myself out of.

garconperdu

12-03-18, 12:48

whatisthis

12-03-18, 13:59

Thank you all for your replies. I'm now worrying about interstitial cystitis. This is a worry I used to have a lot about ten years ago when I suffered from frequent UTIs. I am imagining a future of constant pain and bladder symptoms which would make it impossible for me to enjoy life. This is the same anxiety cycle I've had in the past with CFS / fibromyalgia which are two of my other worries. It seems like one branch of my anxiety is to do with dying and the other is to do with a fear of not being able to live the way I want to. This is such a common pattern for me yet every time it feels so real and I can't rationalize it because although I can come up with rational alternatives that I understand are more likely, I don't believe them.

Hi Cattia

I go through the same thought cycles and I am currently having the same urinary symptoms. The pressure/feeling of needing to go had really got me into a panic and depression.

I've has this before but not this long and did have a camera up there which was clear. The interstitial cystitis really got me concerned. We read the worst as I know people who have it treated and stick to a diet who live normal lives.

I am now nearly fully convinced mine is anxiety/tension/stress which is keeping this cycle going. The bladder is a sensitive organ and I'm hyper focused on it.

My fear is not being to live I want to like yourself. This fear taps into this and I always end up hyper focused on these problems and I bet you are doing the same yourself.

cattia

12-03-18, 19:58

katniss

13-03-18, 02:01

Goodness, I could have posted this! Sorry you’re going through such a worry! I have been having pelvic pain and pressure since January. Got tested twice for UTIs and both times negative. I even got a pelvic and transvaginal ultrasound, it came back clear except for a 2cm cyst, that can’t be the cause of my symptoms. About a month ago I developed the same symptoms as you - urinary pressure and frequency. I completely flipped out because I was already deathly afraid of ovarian cancer and had been reading up on it constantly. I knew this was a symptom. Anyway, after a little while I noticed that I can hold it for 5 to 6 hours and don’t need to go at night, so surely it can’t be a tumour. Hopefully! I’m just holding on to this piece of reassurance right now. And it really does seem like anxiety. Almost as though I’m hyper aware of my bladder.

cattia

13-03-18, 06:33

Katniss, I'm sorry you're going through the same. At the moment I have to go three or four times at night. I had a clear transvaginal ultrasound and also clear blood test for ovarian cancer so hopefully it's not that! It's just horrible. I can hold it if I have to but literally feel the pressure in my bladder to go again even when I've just been. I rarely go more than two hours even at night although the night symptoms have only been in the past week which worries me too.

katniss

13-03-18, 14:39

Can you try to “train” your bladder by holding it for 2 hours, then slowly up to 3 hours? Obviously I am no professional, but I noticed that when I was going constantly sometimes I would barely get anything out, because I didn’t have anything in me to pee. And the feeling would just get worse and the urge even stronger. However, once I started to hold, it got better. I’m still not a 100% better. But I am better than what I was last week. I still feel the pressure constantly, I can feel my bladder slowly filling which is definitely me being hyper aware of it. Try holding it a bit to stretch your bladder muscle and see how you do!

cattia

13-03-18, 15:35

I'm going to try that Katniss, that's what I had to do before when I had this issue years ago. I can't physically need to go two minutes after I've just been!

whatisthis

14-03-18, 11:57

Thank you. Whatisthis what tests did they do, were they looking for irritation in your bladder with the camera? I am completely freaking about this. I don't know any more what's a real symptom and what is caused by muscle tension and hyperfocus. I understand that unconsciously tensing my muscles could lead to a feeling of urgency and pressure but I really worry it's something physical. Have you found anything that helps yours?-

Hi

I had the usual urine tests and 'male' examination, saw the specialist. The camera was looking for anything unusual or damage to the bladder which I think what IC is.

You are exactly the same as me with not knowing what is a real symptoms or tension. I've now got to the point where if I feel good and distracted with someone it virtually goes. I had my first day on Saturday symptom free so I'm convinced it's muscle tension yet again.

I've had a little bit of success with trying to relax that area, pushing the muscle gently like I'm trying to urinate. I won't let myself go back to the toilet in under 2 hours as well. I'm also on medication to relax the bladder which helped the intense pressure/ache but not done anything for frequency.

I've been referred back to the hospital but I doubt they will find anything as I've been through this before but only lasted 3 weeks.

Emc

14-03-18, 20:07

I could have written exactly this myself. I’m now a week in to constantly needing to pee with the most horrible pressure feeling but not being able to pass much. Blood and white cells on urine dip - finished antibiotics this evening but symptoms ongoing if not worse today. I’m terrified I have bladder cancer or a gynae cancer causing my symptoms. I keep thinking I have urinary retention.
This all started after I started worrying about spinal cord problems & realised urinary symptoms were part of it. It’s absolutely horrendous & i feel like i’m Going completely mad

cattia

14-03-18, 20:59

Emc, I'm so sorry that you are also going through this. Did you get your urine sent away for analysis? I finish antibiotics tomorrow and I also feel no improvement in my symptoms. I have no idea what's real and what's in my mind. I am having stabbing pains and sharp urethra pain at the end of urinating. Sometimes when I feel like I need to go it takes me ages to start. I can honestly go and before I've even left the bathroom I feel like I need to go again, but when I try there is obviously nothing there. It's driving me completely insane, I'm not even sure I'm going to make work tomorrow as I have a couple of meetings and I just don't know if I can sit through them. I have another doctor appointment booked for Saturday morning. I really want to be referred to a urologist but I'm sure they will make me send off another sample first and it's been almost a week since I sent the last one and I still don't have the results back. Mine started when I started obsessing over cervical cancer. I think I ruled out ovarian cancer as I had a clear blood test and transvaginal ultrasound before Christmas.

cattia

15-03-18, 20:49

I went to the out of hours to get another urine sample tested today as I feel like my symptoms are getting worse. It came back with no infection but trace blood. Now I am obviously completely freaking out that it is bladder cancer or interstitial cystitis. I'm going to book an emergency appointment with the doctor tomorrow.

swajj

16-03-18, 09:13

Trace blood could simply be because the infection you had has left your bladder inflammed. I went through the same thing last year. Every sample I gave came back with a report from the lab that it had trace blood. I ended up having a renal CT scan and a cystoscopy. The 2 gold standard tests for bladder cancer according to my urologist. Nothing was found and the urologist concluded the blood was a result of the inflammation caused by the infection. This was weeks after the infection cleared.

cattia

16-03-18, 12:05

Thanks swajj, I don't know if I ever had an infection. I'm going to the Dr today so hopefully I can finally find out the results of my culture. My symptoms have subsided somewhat today with the arrival of my period which of course I have read is very typical of interstitial cystitis so now I'm more scared than ever. I just can't imagine living like this long term, I don't know how I'll ever do anything or go anywhere.

---------- Post added at 12:05 ---------- Previous post was at 09:59 ----------

Apparently they never sent off my original sample to be cultured so now I will never know if there was an infection there or not. I have to wait two weeks then do another sample and see if it still has blood in it. I'm really worried that this is the start of interstitial cystitis because the feeling of pressure is pretty much constant.

cattia

18-03-18, 16:49

Having another terrible day today. I am starting to get more and more bladder pain every time I run, jump or sometimes even walk. It's like a kind of intense pressure or 'soreness' in my bladder area. I'm not sure how I'm going to manage the next couple of weeks with this level of anxiety. There is absolutely nothing I can do until I've finished with my period as there would be blood in the urine sample no matter what until that point. I googled bladder pain when moving because I basically seem to want to inflict even more misery on my sorry self, and pretty much the only things that came up were my two worse fears, bladder cancer and interstitial cystitis. My symptoms are a perfect fit for interstitial cystitis, with the sudden onset of pain mimicking a bladder infection and my age is when most people get diagnosed. Obviously this would be better than bladder cancer, but in my mind only marginally because I really can't deal with being stuck with this level of discomfort for the rest of my life. My anxiety is out of control. I just feel like all I want to do it sit and google all day long because I am desperate for reassurance. I know this goes against everything that we should do to support ourselves so I'm trying not to but I feel so agitated with the worry and stress of it all. Usually once I get myself into this state the only thing that will get me out of it is getting tests done, but I know how long that would take as it will mean referral to a specialist. Dumping the contents of my brain on here helps a bit though so I'm just going to keep adding to this thread of woe.

jojo2316

18-03-18, 18:17

Hi Cattia- I bought Phantom Illness on your recommendation and it’s wonderful - I’m reading it instead of googling and feeling so much calmer. Maybe do the same thing?
This too shall pass
Xxx

cattia

18-03-18, 18:32

Thank you jojo, I'd forgotten I had it, I'll dig it out and start reading it again. It's an amazing book isn't it?

whatisthis

19-03-18, 13:15

I had exactly the same symptoms until the doctor told me I didn't have IC for the 3rd time... Thinking back now those symptoms of pain and intense pressure came on after first reading about it.

I did though find out through family that there is people I we know that have IC and manage it perfectly fine. I guess we just read the horror stories online.

I had to wait like yourself and it is torture. I couldn't imagine life like that but I pushed myself back to work and socializing and it has started coming and going now.

I hope you can get the answer soon on your fears and then start to relax.

cattia

19-03-18, 17:25

whatisthis

19-03-18, 18:15

Thank you whatisthis. I admire the fact that you are managing to make progress with this. I really wish I hadn't had the positive test for blood in my urine because it's holding me back from accepting that this could be a psychological thing. I'm convinced I'm either dying or going to be stuck like this forever. I'm totally losing the plot over it.

It took me a few weeks, I cried and imagined the worse. It's been back today with needing the toilet but i'm continuing as normal.

There is so many things for traces of blood in urine, most likely after effects of UTI. Make sure you get it all checked when you can then get sorted.

I've not been told mine is anxiety yet but I'm going down that line while I wait for referral. But like I said in the last 2 weeks I've had periods where its gone.

katniss

19-03-18, 22:42

Unfortunately my feeling of urge to urinate came back.. I’ve had a lot of stress from other personal issues, so I am attributing this symptom to that. At least I hope!

Just wanted to ask. What does it feel like exactly? For me it’s an urge to urinate, but it comes more from down below, like my urethra. This is going to sound TMI, but I can tell when my bladder is full because my bladder will feel tender when I press it. But with this urge my bladder doesn’t feel tender unless if I’m *actually* full. Does this sound similar? I also feel the urge more when walking or being active, it’s not very noticeable when sitting down. Although sometimes during extreme stress I do feel it when I’m sitting

cattia

19-03-18, 23:15

katniss

20-03-18, 00:32

Although unfortunate that makes me feel loads better! We can get through this!

swajj

20-03-18, 05:35

Katniss, you've described it exactly! I actually have to press my bladder to see whether I actually need to go or whether it's the bladder pressure. I also notice it when I'm moving about, in fact running, jumping or even sometimes walking gives me the feeling of pressure every time I move. I did manage today to relax my muscles enough to stop feeling the urge as strongly so I'm sure it's all down to pelvic floor tension but it honestly feels like a huge pressure,almost a soreness.

That’s what I used to do too. I was so worried that I had bladder or kidney cancer that a simple UTI would set me off. I could never tell if I needed to urinate or if I was just imagining I did. So I spent half the day pressing my bladder to try and tell. I moved past that and on to something else but last year I started having the microscopic blood in my urine. I only had the sensation of needing to urinate for about a week then. All of that led to the urologist appointment and tests I told you about the other day. I remember thinking “I knew years ago I had bladder cancer when I had the first UTI and no one would listen to me. As you know my CT scan and cystoscopy showed nothing. lol Bloody anxiety.

katniss

20-03-18, 18:57

I too have microscopic blood in my urine. Apparently it’s common and usually no real reason is found. I’m still getting the pressure sensation. It’s almost like a burning after I pee, not directly after but sometime after. But I’ve been tested for a UTI, and nothing has been picked up

Emc

22-03-18, 17:09

So I saw a urogynaecologist today about my issues & she says it’s entirely in keeping with an overactive bladder probably triggered by anxiety. The more you try to empty your bladder the more irritated it becomes which worsens the symptoms. It makes sense really. Not that it solves the problem!! You’re definitely not alone though & it seems unlikely that all of us posting here have bladder cancer - it’s far more likely it’s all anxiety related.

pulisa

22-03-18, 17:58

I have an irritable bladder and the more stressed I am the worse the frequency is. I've been tested for IC in the past and all clear-no bladder ulceration etc and my bladder capacity is normal. For the past week I have been doing bladder training exercises by deliberately holding out for as long as I can between loo visits. It has definitely worked but has been very hard and painful with the bladder spasms. I've tried to distract myself as much as I can. It's really worth trying, cattia.

cattia

22-03-18, 21:21

Thanks everyone. Katniss, the burning / pressure sensation after you pee is EXACTLY what I have. It doesn't hurt during but it feels weird after.
Emc, it's good to hear that the urologist didn't think there was anything serious going on but it's still a hard cycle to break isn't it?
Pulisa, I've read about bladder retraining in a few places and funnily enough that's how I cured myself of frequent urination years ago when I had a spell of it. This time I'm struggling because I can't let go of the idea that something serious is causing this, but over the past couple of days I've had spells where I was distracted enough for the symptoms to go away.

Sophs50522

26-03-18, 11:06

Hey cattia, I messaged you about one of your old posts about this a few months ago to which you overcome this problem before. Just keep remembering that it went before for you and it will go again! I am still in the same boat .. my symptoms are still here, I also get the urge just after peeing. I feel like there's some pee still sitting in my uretha which makes me feel slightly sore but I can hold my urine in for hours and then as soon as i pee again in all come a back. I can also drink citrus drinks with no problem. It's only alcohol which makes me need to go more which I'm guessing is because it's a diuretic. I've had renal scan and it's a clear.
I'm currently waiting my appointment with top urologist in London who says interstitial cystitis is very very rare and is just a cover up for biofilm infections which he can detect by examining your urine himself. I have no doubt stress and anxiety are triggers as all this started from that for me!
Hope you get things sorted soon x

cattia

27-03-18, 16:08

Thanks Sophs, I've been doing a bit better this week since having an epic meltdown last week. I've definitely found that the symptoms are better when I'm distracted. I've dropped my urine sample into the doctor and that's got me worried again as I'm sure there will still be microscopic blood in it.

cattia

28-03-18, 20:31

So I called the Dr today and apparently my urine tested clear for blood. I already started thinking did they send it away or just do a dipstick test but I'm just going to try to accept this as good news and move on. I honesty think this is the worst health anxiety freak out I've had for years and years and years. It's really sent me over the edge so I need to try to recover from it.

Sophs50522

02-04-18, 16:24

Glad your feeling better! I also get days where I am like yes I got this and other days it drags me down. It's a yoyo effect isn't it.
I will check in and let you know how I get on in June with the prof. I think we may have a bit of an irritable bladder from stress worry and panic. Explains the good and bad days. Hopefully it will go as quick as it came for us .

cattia

04-04-18, 07:39

I've had some more symptoms these past few days, feels like some pressure and spasms in my uethra, also general discomfort in my pelvis, I can't really describe it but it feels kind of inflamed inside.
I'm dropping another sample off today as I'm obsessed with the worry that something wrong. I might also ask for a test for yeast infection etc to make sure it's not that, although I don't have the classic symptoms. My anxiety about this is pretty bad, and as usual it's ruining my holiday as I can't think of anything else.
I've started on a super low dose of fluoxetine (I have the liquid so I'm taking the equivalent to about 7mg, hoping to work up to 10). Already it's giving me insomnia. I really don't want to be back on meds, but I can't take these anxiety levels, it's making me miserable. All day long I just wonder which type of cancer I have and play out different scenarios. I think about what tests I need and how I'm going to get them. I spend endless time wondering whether I should go back to the doctor, wondering whether my symptoms are real or in my head, just going over and over the same stuff. It's been a month since I first started with these urine issues and I'm also wondering if it's connected to my cycle as it happens after ovulation. I'm fed up with it all and just wish I had some answers.

pulisa

04-04-18, 08:12

katniss

05-04-18, 05:34

Hi Catt!

Did you test positive for a UTI at all? I read somewhere on another post that you mentioned taking antibiotics.

It’s funny that you mention that yours may be linked to your cycle. I am actually thinking the same! I also feel as though mine gets worse near my period. Otherwise I still have the pressure like feelings but only when I actually look for them. However, closer to my period it’s quite uncomfortable and constant. Bah! I can’t believe anxiety can do this!

cattia

05-04-18, 07:18

Hi Katniss,
I don't know if I ever tested positive as they never sent my sample away before I had antibiotics. I believe it was positive on the dipstick test but as I understand it, that doesn't necessarily mean that an infection would actually grow if sent to the lab. I feel a general discomfort which seems to be after I ovulate. When I was younger I would get what felt a bit like thrush every month before my period but I always tested negative for infection so I wonder whether the hormone imbalance is causing some irritation that isn't actually an infection?
Pulisa I did drop my sample off because I couldn't let it go in my head and now I wish I hadn't. I know it's reassurance seeking and from what I've read on here, I know there is also a chance it could once again contain microscopic blood which seems like it's quite common but would mean being referred for more tests and equal more worry. It's really all I can do not to rush to the doctor every day at the moment. I'm also really doubting my decision to go back on a low dose of meds in case in some way that creates even more unbalance in my body and somehow makes my symptoms worse.

Sophs50522

05-04-18, 07:44

Hey cattia, I really feel your pain of this vicious cycle of anxiety. I like you always go to doctor for reassurance. I personally think it's good for us and like you said can help with a referal when they can see the distress it's causing us. My question is .. is Anxiety Causing our symptoms or are our symptoms causing our anxiety? How long did you have it for last time ? Did you have a cystocopy? Are you on birth control pills ? If so come off them as they could be the cause if your problems are hormone related. I find my symptoms are worse on my period. It's also affecting my bowels so i can't help but think it may be pelvic floor related for myself x

cattia

05-04-18, 08:37

I think last time I had it for a good few weeks, and the cyclical thrush thing for much longer, probably six months or more. I haven't had a cystoscopy, have you? I am not on birth control but I'm 41 so I guess my hormones could be going a bit crazy if I'm entering into perimenopause. I will hopefully get the results of the urine sample by Friday. For me, the symptoms are worse after ovulation and seem to go away as soon as my period arrives. It's so annoying and frustrating isn't it! The pressure is a bit better and I do think that's down to unconsciously tensing my pelvic floor due to hyperawareness. I seem to have some discomfort after urination though (not during) and I can't conceivably think how that could really be linked to anxiety.

Sophs50522

05-04-18, 10:51

It do sound like it's hormone related. Apparently menopause can cause oestrogen in the uretha to break down as your gp about that ? They can prescribe a cream for it.
I'm only 28 so I cant see that being my problem here. I always have the urge just after urinating. It's just really uncomfortable. I haven't had a cysto and won't be either. I will trial every medication first before having one of those. They can cause more problems than needed. Are your symptoms same as last time you had it ? How long have you had it for now ? I agree I don't think mine is Anxiety either because all this happened when I was actually overcoming another problem and I was in a good place at the time. How ever I do believe the stress was the cause from all my panic attacks.

Emc

05-04-18, 11:00

Do any of you have any incontinence linked to your symptoms?
I’ve barely stopping googling over the last month & i’m Trying to confine it to ‘bladder symptoms anxiety’ ‘urination anxiety’ etc to avoid all the ‘it is CANCER’ stuff & there is so much about the links between anxiety & stress and bladder over activity & with irritable bowel which we all know is linked to anxiety. I guess simply being hyper aware of your bladder & urethra could cause these issues.

Sophs50522

05-04-18, 11:45

Hey emc, I don't suffer with that. But I have heard that that's usually an anxiety symptom with the bladder. Which is usually down to anxiety thinking you need to go more often and your bladder capacity reduces from urinating more. Basically messes up your bladder control and function which is why they say OAB isn't related with pain. I guess everyone is different though. I dont really have pain but more discomfort. Really looking forward to seeing a urologist and get to the bottom of it all x

Bittersweet05

05-04-18, 12:05

Hi. Just went thru a uti. Only thing had was urgency to pee. I took home test and strips said uti. Called dr since just there for pap. Prescribed meds. After 2nd day really was getting scared cuz not clearing up but day 3 felt better. Also got pap test results and were good. I had myself health anxiety working overtime. Feel better but think ibs is what causing me issues with health anxiety. Stay positive. That uti was first ever and I'm 60. Hang un there.

katniss

05-04-18, 14:18

Mine isn’t a UTI, got tested twice for it. Do you guys get days of relief in the middle or no? And can you hold it for long periods of time? Mine seems to be absolutely horrible in the morning I have to speed walk to the bathroom because I feel so full! And I usually am full which is strange because I never had this problem before. I would always be able to lie in bed and scroll through my phone before going to the bathroom. Now i race to the bathroom upon waking! Although I’m lucky in that it doesn’t wake me up at night. So I am able to sleep through the night. I can also hold it for long periods during the day - as long as I’m not actually full. I’ve learned to tell the difference between urge and actually being full. Can any of you relate to this?

whatisthis

05-04-18, 14:33

I have discomfort with urgency. The discomfort is strange and moves with the pressure. I've been trying to make sure I don't go for 2 hours, managed 4hrs as well but yet I still cant get the urgency to lessen consistently. The bladder retraining should be working, I'm also on my 2nd bladder relaxant medication with no luck.

I've had a few days symptoms free and it was bliss. I'm male and had small bouts (3weeks) of this in the past, cystoscopy was also clear I had after the first time I experienced this. This bout has been going on 3 months, it feels like torture.

---------- Post added at 14:33 ---------- Previous post was at 14:29 ----------

Yes I race to the bathroom upon waking.

I've actually said this isn't a normal feeling of urge but something else maybe.

It's strange as I have no fear of cancer or diseases with this but being left with this constant urge and no answer for the future.

Sophs50522

05-04-18, 15:04

I've also had about 10 negative uti tests. But biofilm infections hide in the bladder wall and come in and out of the wall hence why you can get good days and bad days. This is actually what some urologists believe interstitial cystitis is. It only diagnosed when they can't find any other reason to what could be going on. Worth looking into if OAB meds aren't working. Amitriptyline is meant to be a good one x

whatisthis

05-04-18, 17:51

Never heard of biofilm infections before, I'm scared to google it to be honest. I scared myself enough with IC and google. I'm still waiting for my NHS referral which has been screwed up but I'm tempted to just go private for the consultation now. I can't keep living like this.

I thought I was getting somewhere lately with this but today has crushed me. I find the feeling of needing the toilet horrendous, can't relax or ignore it!

Sophs50522

05-04-18, 18:14

Hey whatisthis .. IC scares me too but after finding a top urologist who says I doesn't exist and if your having symptoms of an infection then it's an infection. He's treated 100s of patients. As your male UTIs are less common aren't they so You could just possibly have an overactive bladder. Have you had your prostate checked?

whatisthis

05-04-18, 19:04

Yeh I've had my prostate checked a few times! I'm 35 so not in that bracket yet as well.

Male UTI's are uncommon so you always have to get checked as a male.

Last time I had this for 3 weeks I had the tests and was diagnosed with overactive bladder. I didn't think much of it as I was symptom free when I saw the consultant. My GP was hoping the meds would help but nothing so far.

Although IC scares me it would be nice to have an answer and some kind of treatment. A friend of the family has it and it fine with diet changes and some other treatment. It's sat in this limbo of tension and anxiety.

I hope this urologist sorts it out for you. This has been such a frustrating and upsetting problem, I dealt with chronic pain for 2 years and I'm finding this harder I think.

Sophs50522

05-04-18, 20:01

katniss

05-04-18, 20:45

Do you guys feel it more below? Don’t know how to describe it - but for me it feels like the muscle or sphincter where the urine comes from is uncomfortable. I can feel it more when exercising or walking. It goes when I’m sitting or lying down except when I consciously flex that muscle then the feeling comes back.

Sophs50522

05-04-18, 20:51

Mine is definitely more in my uretha. Mine feels like I have tampon string rubbing the area constantly. Sorry for the Tmi. But that is exactly what it feels like.

cattia

05-04-18, 20:59

I never saw anyone last time, I just kind of figured it out on my own. Katniss, yes, I have exactly that. Sometimes running or even walking aggravates it, but it definitely improves when I'm distracted. Recently I notice discomfort if I drink alcohol which has also made me worry more about interstitial cystitis. I feel general discomfort after I urinate but not the pain and burning during urination. This whole thing has really sent my anxiety into overdrive :(

Sophs50522

05-04-18, 21:14

Cattia alcohol is a duretic it's no good for any bladder problems. Especially oab. So don't worry thinking it's IC. Apparently IC is very rare. Alcohol affects me also. Can't drink it. Makes me want to urinate terribly.

Emc

05-04-18, 21:15

I’m so glad you said about the walking - I find exactly the same & was starting to panic in case that meant something was pressing down on my bladder when I was upright ... but if we’re all the same then that’s unlikely. I feel it in my urethra too - it almost feels like urine is sitting in there & I have to tense my pelvic floor all the time to keep it from leaking out.
I’vebern Reading about hyperactive pelvic floor tonight & i’m Wondering if it fits for me. I do feel like I’m constantly tensed down there because i’m So fearful of incontinence. I have rectal spasms at times too. And heat over my groin definitely eases the discomfort temporarily.

katniss

05-04-18, 21:59

Emc - ditto! It feels like urine sitting there and irritating it! And I can tell that it’s not a whole lot! Crazy how all of our symptoms are the same! Makes me feel better lol

whatisthis

06-04-18, 10:07

Ahh. Yours quite possibly could be OAB then by the looks. You got seen pretty quick last time on nhs then did you ? I've been waiting 6 weeks so far for nhs. Will be seen by private urologist before nhs the way it's going. What were your symptoms last time may I ask ? I'm convinced I've got Lyme disease. As all this started last summer with neurological problems. Head pressure. Dizziness. Outer body experiences. Eye floaters and now bladder problems. My back garden is like a jungle so i wouldn't be suprised. Did you have CAT scan last time as well as a cysto? I will refuse a cysto if they ask me to have one but hoping they will allow me to have a CAT scan.

---------- Post added at 20:01 ---------- Previous post was at 20:00 ----------

And i agree. I've always said id rather back pain over this. Atleast then I can take painkillers and rest. Bladder keeps me on full alert. It's awful. Can't even sit still sometimes

The referral last time was 6 months just as I had my second episode of it finish.

They have totally screwed up my referral this time so I'm trying to sort that :(

Strangely it got so intense yesterday and then just disappeared. Woke up with the worst neck ache so I'm worrying about that instead now. Fingers crossed I don't start needing the toilet soon :O

---------- Post added at 10:07 ---------- Previous post was at 10:04 ----------

Very odd.

I have the same sometimes with the irritation in my urethra like there is still urine in there. I also feel like moving/walking/running/driving over bumps aggravates it.

Also alcohol has always made me urinate loads so I'm avoiding it right now.

Sophs50522

06-04-18, 11:10

Katniss I agree. I think we all have an overactive bladder from stress and worry. Let's hope it goes for us all.
Omg whatisthis a 6 month wait ? Ahh. That don't sound good. I was hoping to see nhs before private just incase it is an overactive bladder and not biofilm. Would save me 100s in private fees. *sigh* :(

cattia

06-04-18, 11:55

Do any of you ever feel like you have spasms in the end of your urethra? I'm getting these and it's freaking me out :(
If they decided to refer me and I have to wait six months I think I'd have to pay private. I'm not going to ring up for the results of my sample until next week because I'm away this weekend so I'll just worry if they don't come back clear. I'll go in next week and get them I think so I can talk to a doctor at the same time. Getting results over the phone really sets off my anxiety!

Emc

06-04-18, 12:42

Yes!!
Really bad today - literally feeling constant urge to go & horrible spasm pain which is actually fairly new. Really panicking this is something sinister again.

whatisthis

06-04-18, 12:55

I really feel for you all.

Sorry if I've set anyone off with the 6 month wait thing. I wasn't an emergency then but I think each case is judged on referral and different areas have different wait times. I'm in Manchester.

I was fine all morning until I actually went to the toilet and then it begins. It's like the whole system is irritated.

When they finally get my appointment and if it is months away I'll be going private for the initial consultation and get referred back for tests.

cattia

06-04-18, 13:03

pulisa

06-04-18, 13:08

Yeah, the spasm thing is new for me too, wonder if we are actually sending our urinary systems into spasm by focusing so much on them? Sometimes I think I can feel burning after I pee as well, other times not.

Certainly you will fell all sorts of weird sensations if you focus on your bladder and urinary system all the time. I've been there and done that, had all the tests for IC, cystoscopy, bladder capacity and kidney tests etc etc.

There's a whole range of "pelvic floor dysfunction" symptoms out there which are exacerbated by anxiety.

MyNameIsTerry

06-04-18, 13:15

Certainly you will fell all sorts of weird sensations if you focus on your bladder and urinary system all the time. I've been there and done that, had all the tests for IC, cystoscopy, bladder capacity and kidney tests etc etc.

There's a whole range of "pelvic floor dysfunction" symptoms out there which are exacerbated by anxiety.

This is obviously a thread so far out of my male comfort zone :sofa: but from my own experience I wanted to mention something which knowing pulisa has mentioned her agitation symptoms may ring a bell.

I've noticed that I have times where I feel like my agitation is building to a need to scream. It's an unpleasant feeling. Even at lower levels I can feel this in restless lower legs and my groin.

Something that may also be interesting is that it is documented in sexually intrusive thought themes that focus on the genitals increases blood flow to them causing unpleasant sensations which account for the need to mastibate. This may be relevant to how anxiety impacts on urinary sensation, although I've not dug into that, and women have far more complicated systems in that area of the body than us men who tend to be pretty damn lucky in many respects!

Emc

06-04-18, 13:16

I think I’be done it by straining to empty my bladder - I feel as if I got even a few drops out it would make the discomfort go so I try but then it hurts after a while ��

whatisthis

06-04-18, 13:38

This is obviously a thread so far out of my male comfort zone :sofa: but from my own experience I wanted to mention something which knowing pulisa has mentioned her agitation symptoms may ring a bell.

I've noticed that I have times where I feel like my agitation is building to a need to scream. It's an unpleasant feeling. Even at lower levels I can feel this in restless lower legs and my groin.

Something that may also be interesting is that it is documented in sexually intrusive thought themes that focus on the genitals increases blood flow to them causing unpleasant sensations which account for the need to mastibate. This may be relevant to how anxiety impacts on urinary sensation, although I've not dug into that, and women have far more complicated systems in that area of the body than us men who tend to be pretty damn lucky in many respects!

Interesting stuff, I'd have to say I've experienced most of what you have typed there as a male.

Emc

06-04-18, 13:55

It almost feels like there are two different sensations for me - an ache raw feeling over my bladder which then worsens periodically into spasms. I don’t know if urine concentration or whatever plays a part in that - it does seem a bit worse the less I’ve had to drink but then if I drink a lot it feels like my bladder will pop with pressure. Urine volume is rubbish most of the time too although that’s probably because o’m Trying to pass so frequently. I have noticed better volumes on two occasions after i’ve Taken diazepam for panic but I don’t know if that’s because i’ve Had water with it, because I can then delay peeing for a while or because there’s an actual spasm being relaxed... anyone else? I note that diazepam is sometimes used for OAB in the US according to dr google ...

whatisthis

06-04-18, 15:45

Same for me Emc.

katniss

06-04-18, 19:05

I have that too. Do you guys have isssues with dribbling after peeing? I started getting that too.. :(

cattia

06-04-18, 20:12

For me, it's a kind of general soreness and discomfort down there all the time. I think it's my urethra but sometimes I wonder if it's my cervix or something? Also does anyone else get random stabbing pains inside? I've been getting those for a while.

Sophs50522

06-04-18, 21:46

Mine seems to feel worse the more I drink. I can be fine for hours and hours but soon as I've been to toilet Bam. It's back again. Must be muscle related surely ?
Whatisthis ... I've just had a cancellation for the private urologist in London for 26th April. I'm so pleased after hearing you waited 6 months with nhs. I will come back and update you all. Hopefully give you all some tips! Lol

---------- Post added at 21:46 ---------- Previous post was at 20:56 ----------

Hey cattia. I don't get random shooting pains but i get random sensation in the uretha that urine just suddenly drips down and my pelvic floor tenses. The sensation is like a second each time. It's so weird

Emc

06-04-18, 23:04

I get exactly the same thing Sophs which makes me race to the toilet thinking i’m Going to wee myself.
Katniss - i’m Not completely sure but sometimes I think that what happens with me is I have some wee left in my urethra after I finish & then the next time my bladder spasms it gets squeezed out ... sometimes the next time I sit down it seems to happen too ...

Sophs50522

07-04-18, 08:55

Do anyone know how private healthcare works ? Can a private urologist refer you for testing on nhs such as CAT scan etc ? I really don't want to be paying for that privately.

Emc

07-04-18, 09:15

Yes they can. It’s usual NHS waiting lists after that but cuts out the initial wait anyway!

Sophs50522

07-04-18, 10:00

That's brilliant thank you!

cattia

07-04-18, 10:10

Sophs, not too long for you to wait now. Hopefully you will get some answers.

Sophs50522

07-04-18, 10:25

I hope so cattia. The unknown is the hardest part. I'm having a bad spell at moment. Not sure if its because I'm on my period or what. I have what feels like indegestion that's all under the back of my ribcage along with the bladder ache. Very stressful.

cattia

07-04-18, 10:42

Yeah mine is bad too, maybe because I'm away from home just now so more anxious. I can't really describe what I feel, just a sort of constant discomfort in my bladder area, like it's kind of all knotted up! I wish I could believe that all this could be caused by anxiety. I believe it's possible but I just also believe it could be something really serious.

Sophs50522

07-04-18, 10:50

Same here I just can't really explain what it feels like other than it just don't feel right /normal.
Don't think mine is Anxiety as mine eased up for a week whilst I was still hyper aware of my bladder and very anxious with other symptoms. I'm really gutted it's resulted in me neededing to pay privately but if this man can give me my life back it's worth every penny after nearly 4 months of hell with it.

---------- Post added at 10:50 ---------- Previous post was at 10:49 ----------

Needing*

whatisthis

07-04-18, 14:43

I'll be paying private next week if I still don't get this NHS referral sorted. I work right next to a private hospital as well. I should of done it 3 months ago but listened to family saying to wait. It's torture not being able to do anything really.

Emc

07-04-18, 16:22

Honestly I think it gets to the point where paying for an initial assessment just makes sense if you can afford it. I wish I could afford to have investigations done privately as well as needed but at least a private appointment speeds things along a little.

---------- Post added at 16:22 ---------- Previous post was at 15:53 ----------

so I managed to go 6 hours overnight without needing to pee or any leaks. Got up this morning & almost immediately the urge started. I had a counselling appointment (where I managed to go for over an hour without weeing) & struggled through my nephew’s birthday party. Now i’m Home it seems easier. In fact as I was leaving my sister’s house it felt a bit better. There has to be a psychological element for me otherwise surely my nights would be worse & I wouldn’t have got relief when I knew I was going home ...

cattia

07-04-18, 17:45

Mine actually seems worse once I've urinated, the longer I can go between, the less irritable it feels. I will see how my next urine sample comes back. I'm definitely happy to pay private for a consultation but doubt I could afford the investigations. There is a private hospital near where I work.

Emc

07-04-18, 18:36

Yup. I’m exactly the same. If I get caught up in a cycle of peeing all the time it’s a nightmare, especially if my pee is concentrated. Bloody hard though.

Sophs50522

07-04-18, 18:52

Whatisthis .. I really don't blame you. I've had mine for 4 months now and I really don't think I could wait another 6 months or so to see someone on nhs.

Cattia it's worth looking into even if it just gives you a piece of mind. Yours really sounds similar to mine. I'm fine for hours until I pee. Unless I'm having a Really crappy day. I am going to be counting down the days now till i am seen.

whatisthis

07-04-18, 19:40

Strange as I've just gone 5 hours, went round IKEA and actually forgot about it all. Felt fine. Went to the toilet when I came back and now 10mins later the feelings and urge is back.

cattia

07-04-18, 20:06

I went about six hours without going today but as soon as I go the discomfort is back and now I'm back to going loads and dreading it every time. It's the week before my period which seems to make it worse.

Sophs50522

07-04-18, 20:13

I wonder if it is an overactive bladder in our cases. If we are fine for hours until our bladders have to contract to urinate. It's like our bladders are going into spasm when being used. I find the urge slightly lessens after an hour or so on good days. Oh what a mystery Hey.

Emc

07-04-18, 20:18

5-6 hours between going?? That sounds like heaven! I’m celebrating getting to an hour atm! Lol

whatisthis

07-04-18, 22:02

It doesn't always happen. Some days I'm going constantly and others I manage big chunks of time. On the good days like Sophs says the urge does lessen after an hourish.

smcgow

08-04-18, 04:08

I feel for you, my discomfort will not go away and I am about to go crazy! 3 different supplements I am on now to try to fix it. I feel so lonely and I am sooooo scared of IC!!! Prayers go out to everyone on this thread, I understand.

Emc

08-04-18, 13:21

Can I ask if any of you ladies are overweight at all?

cattia

08-04-18, 14:02

I'm the lower end of normal weight Emc. These past few days I've found the frequency is less but there's a pain after I've been in my urethra / bladder area.

Sophs50522

08-04-18, 22:23

Not me I just weigh under 8st. Think i am underweight.
I'm having an awful few days now.
Have any way had pain on the sides of abdominal area ? It feels like a stitch. Can feel it when I move and sit down. I've got that with terrible urge that won't go away. Feel really bloated too :(

---------- Post added at 22:23 ---------- Previous post was at 22:22 ----------

Anyone*

cattia

09-04-18, 07:26

Sophs, I've had pain on my right side the past few days that feels like a pulled muscle but really low down. Also had soreness inside coming from my urethra / bladder / cervix, who knows where, it's hard to pinpoint the pain.

Sophs50522

09-04-18, 10:28

Thats like mine cattia. My stitch almost feels similar to when you ovulate. Ive got terrible irritation in my uretha. Pretty sure it's not my cervix. But its inflamed my whole vulva area so to be honest I think any uretha irritation can inflame the areas around it. I've been speaking to a few ladies off cobf forum. It's bladder health forum. It's been a great help

---------- Post added at 10:28 ---------- Previous post was at 10:26 ----------

I'm having a Really good day today, it's barely noticeable but tomorrow will be a different story. How long have you had yours for now cattia ?

cattia

09-04-18, 11:04

I had suspected UTI almost five weeks ago. Took antibiotics for a week and at the end of that time it went away and my urine sample was clear around three weeks later, the week before my period, symptoms have returned. It's the same time of the month as last time it happened which made me wonder if it's hormonally linked.

Sophs50522

09-04-18, 11:20

Ah that's really strange isn't it. Mine started end of November. Just felt like normal mild uti that went away after a week. Then come back again and I've had one week of relief since. Which makes me think it's got to be muscle/ tension related.
We will soon see when the prof looks at my urine for white blood cells in a few weeks! I Will be shocked if he finds them as im not a uti sufferer. Or wasn't shall I say.

cattia

09-04-18, 12:30

When I was in my twenties, I used to get UTIs ALL the time. I had one pretty much every month. I went around ten years without a single one, and now this! I'm going to call later to see if the sample I sent in last week was clear. I'm worried it's going to show blood again :(

Emc

09-04-18, 13:08

That’s funny - I have tummy pain today too. Mine is on both sides & I thought bowel spasm or something but muscular pain actually fits too.
Feel completely exhausted today too - this anxiety lark really takes it out of you!
It’s been 5 weeks for me too with not a day of relief in that time ��

cattia

09-04-18, 13:28

I just called the surgery, latest sample from last week all clear. I guess that means no infection but also no blood which I think is a good thing as hopefully it isn't bladder cancer. Less pressure and more soreness for me today.
Has anyone been taking DManose? I'm taking them daily now as they are meant to help with all sorts of urinary issues. I am thinking of trying some herbal remedies for my anxiety. Did five days back on fluoxetine and had to stop taking it as the side effects were so bad. I do think antidepressants work but I feel they have to be a last resofor me, because when I'm trying to get on them, even at a low dose, they make me so ill for a few weeks that I can't really function, which with a full time job and three kids is a problem for me! Emc, I definitely find I get major fatigue with anxiety, just drains all the energy out of us I guess.

whatisthis

09-04-18, 14:09

Oh fatigue is a killer, nearly everyday I get it. 3 kids and full time job is hard enough without all these problem Cattia! I have my son at weekends and I'm so exhausted, don't know how you do it!

I've actually been okay since it peaking on Friday night. Very mild symptoms here and there, I'm hoping these periods of improvement increase over time. Managed the cinema, restaurant and wine yesterday.

Current partner is very understanding luckily. I'm dealing with a lot of emotional stress right now (still love my ex :'() and have been for 12 months so I'm expecting the symptoms to come back soon.

/edit as soon as I typed this I get the urge to go!

cattia

09-04-18, 20:04

Well the pain I have today is definitely in my cervix. I googled like ab idiot and read that cervical erosion (which I just got diagnosed with ) can also result in bladder problems so now I'm back to thinking I have cervical cancer. My husband is barely speaking to me because he's so sick of my anxiety. I don't feel like I can take much more of this :(

Sophs50522

09-04-18, 20:20

I can relate hugely to anxiety fatigue. It just hits you like a ton of bricks don't it. It's awful. I've tried D mannose in the tablet form and it did nothing. ( waterfall d mannose is meant to be great but only for UTIs caused by ecoli )
I also tried uva ursi, Candida antifungals, probiotics. Homemade Barley water which a Chinese doctor recommended. No change though. What I found is good is tumeric tablets ( it's an anti inflammatory ) really helps and saves taking ibuprofen all the time.
My cousin has a cervical erosion. She has alot of pain with it. She's had it for 4 years now and she's still here so don't panic . Your anxiety is in full swing at moment.
Try taking a nice relaxing bath, I find it really helps me relax just soaking there for half hour or so

Josh1234

09-04-18, 22:58

katniss

10-04-18, 02:14

I’m 5 days overdue for my period and my urinary symptoms have gotten worse. I’m getting major cramping today and keep thinking my period is here only go to the bathroom and find nothing :( And no, I can’t be pregnant :) I also leaked a bit yesterday which freaked me out! It was an incredibly minuscule amount but I’m terrified of the big C. I did have a small 2cm cyst show up two months ago on a pelvic ultrasound. So maybe a cyst? But it was far too small to cause symptoms and I was getting similar symptoms during that time as well. Have any of you leaked before? Could it really have been due to anxiety? Or is there something physically wrong?

whatisthis

10-04-18, 07:44

You still love your ex? And you have a new partner that knows you love someone else?!

No one knows! I think sometimes when I get really low it all the feelings comes back. Trying figure out of its real or because of anxiety. Not sure why I typed that above.

/Back on topic

---------- Post added at 07:44 ---------- Previous post was at 07:42 ----------

I’m 5 days overdue for my period and my urinary symptoms have gotten worse. I’m getting major cramping today and keep thinking my period is here only go to the bathroom and find nothing :( And no, I can’t be pregnant :) I also leaked a bit yesterday which freaked me out! It was an incredibly minuscule amount but I’m terrified of the big C. I did have a small 2cm cyst show up two months ago on a pelvic ultrasound. So maybe a cyst? But it was far too small to cause symptoms and I was getting similar symptoms during that time as well. Have any of you leaked before? Could it really have been due to anxiety? Or is there something physically wrong?

I'm male but anxiety/stress can make you overdue with your period I guess?

cattia

10-04-18, 07:59

Josh, I hope you are able to figure things out. I think anxiety does make other issues in our lives also seem so much more intense and unmanageable. It's hard to think straight.
Katniss, I've not had the leaking but I've had spasms that have made me feel like I'm going to leak and I've also read that leaking is pretty common with overactive bladder.
I'm losing myself in the cervical cancer hole today. Wish I hadn't read that it can be associated with urinary problems. Sigh.

Emc

10-04-18, 08:22

Katniss - i’ve Been leaking. It was a leak that freaked me out & seemed to start this whole thing off in the first place ��

cattia

10-04-18, 11:07

pulisa

10-04-18, 12:41

Went back to the doctor. She has agreed I can move my smear test forward but the first appointment I can get is May 23rd. Six weeks to wait. If that comes back clear then I have to probably go private to see a urologist. I am embarrassed to keep going back to the Dr, in all honesty I dread to think what my notes say. I've actually thought about getting a private GP.

That could be really expensive with HA. If you dread to think what your notes say, maybe this is a good thing? Going to a private GP and having more or less instant access would be the worst thing for your HA and a GP who didn't know your history could easily refer you for unnecessary tests "just to be on the safe side" etc..I know it's hard but you have to have tests based on clinical need alone. You are very aware of how your HA thoughts are spiralling and you are feeling very fragile but you have the skills to manage your HA successfully again.

cattia

10-04-18, 13:17

Yes, you are right pulisa. I do feel guilty about being a drain on the NHS and I do love the idea of being able to go to the Dr whenever I want guilt free, but at the same time I know it would add to my reassurance seeking. When I go to my Dr, I always make my anxiety the focus of the appointment and the physical symptoms as secondary to that, but at the same time I do of course worry that this will lead to them not taking the physical thing I am worrying about seriously. On the other hand, I think they are less likely to take me seriously at all unless I am upfront about my anxiety. Trying to even manage how I present this stuff to the Dr every time I have an appointment is exhausting in itself and I am always second guessing and wondering if I put it across in the best way possible, but then I think that's a common thought process for those of us with HA.

pulisa

10-04-18, 13:42

I think you have an excellent understanding of your HA, Cattia. It's always difficult when you have an anxiety disorder diagnosis on your notes so you think the GP puts every symptom down to anxiety but a good GP who knows you won't.

I actually meant it would be very expensive seeing a private GP regularly. It's £100+ a visit where I live!

cattia

11-04-18, 08:16

Thanks pulisa. Yes it is expensive. It's £85 here or for £60 a month you can get ten appointments a year. It's also a long way from me (an hour to the nearest one). Guess I should just stick to the NHS. I've been so often lately it gets embarrassing!.
How is everyone doing today?

whatisthis

11-04-18, 08:42

I seem to be having less episodes of this. I put it down to pulling a muscle in my back/shoulder/neck last week which is very painful so my mind is totally on that right now.

Kind of backs up that this mind/stress/anxiety related. I've had somatic symptoms in the past like this.

/edit Urgency came back as soon as I typed this haha.

cattia

11-04-18, 10:17

Yes, every time I think about mine the discomfort gets worse! It's also interesting that when I linked these urinary symptoms to my cervical cancer worries, the cervix pain also increased!

whatisthis

11-04-18, 10:21

I can see how that happens. I didn't have pain until I read about interstitial cystitis, I've not really had pain since the doctor confirming I don't have that with the camera results.

I'm sat at work now and I don't think I actually need the toilet but my whole system seems 'nervous' down there.

Emc

11-04-18, 10:39

whatisthis

11-04-18, 11:02

I’m really struggling today. Having side effects from the overactive bladder medication the gp started (nausea, dizziness, blurred vision), the urinary symptoms are as bad as ever & I have pain in my lower back & right hip. Catastrophising majorly about what might be wrong with me. Tried to speak to a gp but no appointments (face to face or phone) left. I just don’t know what to do anymore. I didn’t sleep well last night which doesn’t help matters either.

What bladder medication is it? I've only had dry mouth from the first one I tried. I was exactly the same and have moments where I feel it again but I'm slowly making improvements. I also have the same problem with the GP and the reception staff are so rude it makes me more anxious.

If everything is ruled out I think the way out of this is to lose the fear of this. Which is hard as it's such a problematic symptom. The small episodes I had before I didn't worry and it soon went.

cattia

11-04-18, 14:14

I'm sorry you're struggling Emc. I was having a better day today until I went to the loo and it kind of feels dry in my urethra, like it's full of sawdust, anyone else have that? I'm sure the medication will settle down once you've been taking it a while and hopefully you won't need to take it long term, it will just give things a chance to get back to normal. Have you seen a urologist?

Emc

11-04-18, 20:34

I’m seeing a urologist tomorrow - hopeful for some helpful input because i’m Totally fed up now.

cattia

11-04-18, 20:44

Good luck Emc! Is it private or NHS? I hope you get somr answers, will be interested to hear what they say x

Emc

11-04-18, 22:03

Private. Will update once I get back!

Sophs50522

12-04-18, 07:55

Good luck Emc. Hope you get it sorted

Emc

12-04-18, 11:00

So I saw the urologist who was lovely. Thinks overactive bladder is most likely although says he increasingly sees young women with bladder outlet obstruction due to pelvic floor tightness. He wants to get an X-ray to rule out a bladder stone. Doesn’t think cystoscopy will be helpful at the moment. Has started a new medication to try to calm bladder down & wants me to call if it’s not working & he’ll arrange a scope then.

cattia

12-04-18, 13:35

It sounds really positive Emc. Do you feel reassured after seeing him? What medication did he give you? Will you have the x ray done privately and when will you see him again?

Emc

12-04-18, 13:42

Initially I felt very reassured but now i’m starting to worry again - damn health anxiety! I’m going to have the AXR on nhs - private clinic wanted £400 for it!! The medication is called mirabegron - he said it has less side effects than the solifenacin that I had been on. Basically he gave me his secretary’s number & said if things aren’t improving in the next few weeks to call & he would either see me again or go straight to organising cystoscopy.

---------- Post added at 13:42 ---------- Previous post was at 13:41 ----------

Oh I forgot to say he also doesn’t believe in interstitial cystitis ...

Sophs50522

12-04-18, 14:15

That's good he don't believe in IC. That way you won't be fobbed off with that so called incurable disease! Cystoscopy is quite expensive privately isn't it?
I.hope the medication works for you.

cattia

12-04-18, 22:18

I looked up that medication and I have to say it sounds like a really good one with fewer side effects and long term risks than the older ones. It sounds like he was a good doctor. It's the nature HA to start doubting straight away but just remember that he will be very experienced and qualified in dealing with these conditions and he knows far more than our friend Dr Google!!

Emc

13-04-18, 08:52

So completely TMI question but I have the weirdest clitoral irritated feeling today ... it’s like tingling but not in a good way lol. Anyone have that??

cattia

13-04-18, 10:10

Weirdly I've had tingling in that whole area the past couple of days. It's gone today. I wonder whether it's increased blood flow or something from over focusing on it.
I had a scary experience this morning where I urinated and I think it was quite forceful as I really needed to go(!) Then when I was almost finished, I got a sharp pain in my urethra. It only lasted a second but it was like a really painful spasm or something. Has anyone had that? Of course my immediate thought was a urethral tumour that I irritated by weeing too forcefully!

---------- Post added at 10:10 ---------- Previous post was at 09:05 ----------

My symptoms are worse today and yesterday I drank a fair amount of wine. I've not been drinking much at all recently. It's made me really worry a lot about IC again as alcohol is a trigger with that :(
I don't have pain during urination but afterwards it feels kind of irritated and sore for ages.

Emc

13-04-18, 10:10

Yeah I seem to get that particularly if my urine is quite concentrated or I strain at all to go.
I’m so anxious today which is so frustrating - I really thought seeing the urologist would make me feel better but if anything this is the worst i’ve Felt in days.

cattia

13-04-18, 10:11

I'm having a bad day too Emc. It's horrible isn't it. Hopefully starting your new medication will help. I'm seriously thinking of seeing someone privately. Did you need a GP referral or did you self refer?

Emc

13-04-18, 10:52

I self -referred. The anxiety is awful today - I just can’t switch my brain off & itms making the physical symptoms worse. I just keep thinking of things I maybe didn’t say clearly enough & that he didn’t examine some part of me or what if I need an ultrasound or other scan & he hasn’t arranged it or that he’s wrong & missed something. The appointment was supposed to make me feel better ��

katniss

13-04-18, 14:12

Cattia, my symptoms are always worse right after peeing as well. And then they subside for a bit and I can forget about the whole issue until someone kind of movement (getting up too fast from sofa) or running triggers that muscle and gives me the sensation of having to pee.

cattia

13-04-18, 20:36

Katniss, it's annoying isn't it. I've had a lot of general pelvic pain today as well as internal soreness but then I started my period today so I think a lot of it might have been related to that. I find it hard to tell whether the pain is coming from the baldder / uretrea or vaginal area.
Emc, I think the pattern you are going through is unfortunately really common with HA. We tend to pin our hopes on a particular thing to reassure us but the anxiety is still there so the reassurance doesn't last long, because the anxiety will always find another thing to attach itself too. The trouble is, no matter how many times we go through this same cycle, we ALWAYS believe that this time, the reassurance will work. I know how frustrating this feels as I have been in this position many times. The best thing you can do is try to focus on what the urologist said to you, and try to rationalise the way you're thinking. You know that he is well qualified and in fact has trained his entire career to spot anything serious, and to treat urinary conditions effectively. That's what you have to hold on to. He won't have missed anything, misinterpreted what you said, or forgotten to check anything, it's just your anxiety playing tricks on you.

jessygirl77

14-04-18, 12:22

I am literally having the same problems. I will see a urologist in a few days. I’m terrified he will say it’s IC !!! Literally terrified!

cattia

15-04-18, 08:09

Let us know how you get jessygirl. Seems like a number of urologists don't really believe in IC.
Emc are you feeling any better? Did you start your new medication?
Has anyone else experienced hesitancy at the start of urination? This is newish for me and I think it's because I'm now getting anxious every time I go to the toilet, wondering how it's going to feel and whether it will feel sore afterwards!

Emc

15-04-18, 13:26

Hi. I am feeling a bit better thank you. Had a really good day bladder wise yesterday after a shaky start. I think a lot of it was down to being forced not to wee for an hour during my counselling session - seemed to calm things down a good bit! Anxiety not wonderful today but sure baby steps & all that. Haven’t started new medication yet because GP didn’t have script done on Friday afternoon.
Yes I have some hesitancy which was one of the reasons the GP thought maybe some bladder outlet obstruction probably caused by pelvic floor tightness. I’be been trying to really relax when going to the bathroom the last day or two & it’s helping I think. I think all the kegels I was doing for weeks before that had maybe been exacerbating things!

cattia

15-04-18, 13:47

Yes, I think worrying about the pelvic area can definitely cause us to unconsciously tense our pelvic muscles. I went shopping yesterday and didn't wee for around four and a half hours then this morning I was back to every half hour! Also had two glasses of wine at a friend's house, am now starting to associate alcohol with anxiety since if I have a drink I get paranoid that it's going to set things off and then it does! Probably going to quit drinking for a while, I don't really miss it.
Glad to hear things have been better the past couple of days. You're doing really well, hang in there!

Emc

15-04-18, 13:53

Thank you.
It’s not your 4.5hours but I managed to watch a whole film last night without needing to wee which is a real achievement for me - fairly pleased with myself really. I think i’m Going to have a bath later & try to relax the ‘area’ a bit more lol.

It wasn’t the GP who thought bladder outlet obstruction it was the urologist - sorry not concentrating properly!

jessygirl77

15-04-18, 13:54

I almost don’t want to go to urologist appt I’m fearing the worse .....that she will say IC.
Which I’ve never even heard of till I googled my sensations. I’ve for sure tested negative for a uti. I just have a lot of pressure not pain . Feels like when your holding on a lot of pee , but I still feel it after I pee ��and some leaking sensations. Which I’ve had for awhile since 2 big pregnancies. He amount of anxiety I’m having about this is so extreme ! I’m literally terrified she will say IC as if she would tell me the world is ending !!!!! I’ve never had any issue like this . I had one Uti as a teenager and now I’m 40!!!! And very healthy. I had started during about 75oz if water a day to be healthy , and I’m wondering if that messed something up ??????

Emc

15-04-18, 14:24

I have the same sensation Jessy & I think it’s what’s making me clench my pelvic floor so much which is making everything worse.

cattia

15-04-18, 14:33

I'm curious how many of us are similar age and have had children? I'm 41 and have three children. I had some issues with urethral spasms when my first was a baby but she's 8 now and my youngest is three, I've had no problems since having her until now so it's hard to think iy could be pregnancy related. I also have a twisted pelvis and retroverted uterus but again I've had these for years, although I guess over time both could affect the functionality of my pelvic floor.

jessygirl77

15-04-18, 15:17

I’m so worried these feelings will last forever or even get worse and worse

Emc

15-04-18, 15:29

I’m 30 with 2 children aged 7 & 5. No issues at all prior to 6 weeks ago with bladder (with the exception of the odd leak with sneezing/vomiting) . I do have issues with lower back & pelvic pain since my first pregnancy & was told I needed some serious realignment by a physio a lot of months back.

katniss

16-04-18, 20:06

30 with two kids - ages 3 and 1.
My urinary issues are definitely tied to my period. The feeling of urgency is horrible during my cycle. I have the pressure like feeling all month though. Although I never wake up to go to the bathroom, I wake up with a strong urge regardless of how full my bladder is. Sometimes it’s barely nothing! But I always have to rush to the bathroom in the mornings :(

cattia

16-04-18, 20:38

Most you are younger than me! Katniss I always wake up in the night to go but it's gone back to once a night which it's been like for years. Recently it's been three or four times a night but I think that was also tied to my anxiety. Last month my symptoms went when my period arrived but this month they are just as bad if not worse so I don't know what to make of it.

Emc

17-04-18, 19:29

Out of curiosity do any of you suffer from IBS?

cattia

17-04-18, 20:35

Hi Emc, I have had the odd flare up, but generally my bowels are quite well behaved! How about you? I've read quite a bit about pelvic floor issues causing both bladder and bowel pain and I wonder if this could be the culprit? Trouble is there's no way of knowing for sure.

Sophs50522

17-04-18, 22:40

Emc I started having chronic constipation since the bladder problems started and stool softener didn't do anything really. Doctor diagnosed me with ibs but i said to him I didn't have cramping when eaten or loose bowels and he said there is so many different types of ibs. He prescribed me some meds and I've been fine since.
It's got to be pelvic floor or stress related as I've never suffered with bowel problems.

cattia

18-04-18, 10:55

My pain seems to change, some of the time it feels sore or inflamed after I wee, other times it's general pelvic discomfort and some days I need to pee the whole time. I read this blog yesterday written by a pelvic floor physio saying that of all the people she had treated who had been diagnosed with IC, she believed only one actually had it. The others all had pelvic floor dysfunction. This gives me some hope. Have any of you thought about seeing a PF physio? When I read things like that I feel a bit better, but then I get dragged back into dark thoughts of cancer or IC and that seems to make things flare up even worse :(

Emc

18-04-18, 12:00

I can’t seem to find a semi-local PF physio otherwise I would.

Emc

19-04-18, 15:03

So a physio finally got back to me. £580 for 5 sessions(!!) which seems like crazy money!
I’m really anxious today & my symptoms are dreadful with a pain on the right side of my pelvis ... don’t know what came first to be perfectly honest! Lying down at the moment with some heat & painkillers - fingers crossed that settles it down a bit!

cattia

19-04-18, 20:37

Woah. That is an insane cost!! I wonder why it's so much m more than regular physiotherapy? There's no way I could afford that. Sorry to hear your symptoms are baf today emc. It's frustrating. Do you think the medication is helpful with the urgency?

cattia

21-04-18, 20:04

Feels like my symptoms are getting worse. I have this weird pain deep inside, feels like a kind of pinching, seems worse after I wee but it's there a lot of the time. Visualising a tumour or some hideous growth:(

Sophs50522

21-04-18, 21:31

My symptoms are horrific too past few days. My uretha is burning from where it's so inflamed. I sit down and can feel a pain in my cervix. Like I am internally swollen. I believe it's my bladder being stiff from inflamation. 5 days to go till I see prof Malone lee. Be counting down the days! Can't come quick enough :(

cattia

21-04-18, 22:05

Sophs that is EXACTLY what I have, like my cervix feels swollen when I sit down. I have no idea what's causing it but it feels sore and inflamed. I really hope you get some decent answers at your appointment.

Emc

22-04-18, 11:47

I’m awful this weekend too. Have a lot of extra stress going on as well but I feel like I could sit on the toilet all the time & never be done. Lots of drips too. I’m spiralling j finding it impossible to believe that there isn’t something serious wrong with me.

cattia

22-04-18, 17:44

Emc sorry you're suffering too. Mine is so weird, I went almost four hours today between toilet trips but then when I went once I needed to go four times in an hour. It feels so irritated down there and there is this weird pulling / pinching pain that I think is coming from my bladder. I'm going to have to book another doctor's appointment as I really think I need some sort of scan, I'm getting more and more scared by it all.

cattia

23-04-18, 17:51

I've spent today weeing every five minutes (not quite but it feels like that). Having dark thoughts that I definitely have interstitial cystitis and this is how my life will be from now on. I'm depressed and super anxious. Hope everyone else has had a better day than me.

jessygirl77

24-04-18, 03:32

Have you seen the doctor yet ? What are your main symptoms ? I was worried about this as well. I went to Er and had a sono of my bladder. Which was very healthy looking and had no inflammation at all . Our symptoms can make us overly sensitive to any sensation.

cattia

24-04-18, 05:54

My main symptoms are needing to wee a lot and a feeling of pressure, which varies from day to day, and a the weirdest one is a feeling of discomfort not during but after I go. Always feels like my urine is super concentrated and has irritated me but it happens every time, even when it's very diluted and I've drank loads of water. I'm dropping another urine sample off today and I will try to get a Dr appointment for Friday.

Sophs50522

24-04-18, 09:57

I didn't know a sonogram can spot inflammation ?
My rectal scan come back clear.
Cattia do you have a slow urine flow ?
I've noticed my urine comes out much more slower than usua on bad days and I agree with the urine being concentrated. That was the first symptom I had. It actually smelt and looked like a uti but the urge wasnt there at that point. So clearly something is going on down there!

cattia

24-04-18, 10:02

Yes Sophs, I definitely find it's slow on bad days and OK on good ones which makes me wonder if it's muscular. It's awful, it's sending me insane, I feel like I can't live like this.

Sophs50522

24-04-18, 11:21

I know it's awful isn't it. I feel like that some days. My mums friend has an overactive bladder and she has aches and cramps so I don't really believe when they say OAB don't cause pain.
How long did you have all this for last time cattia ? We're your symptoms the same ?
Weirdly I've had thrush ( sorry for tmi ) for the past 2 days and my bladder pain went. Now it's clearing up my pain is returning. I'm guessing being hyper focused on it don't really help

jessygirl77

24-04-18, 12:24

I think when you go to the dr on Friday you will feel much better. Yes I was so greatful the lady new how scared I was of something being wrong with my bladder ,she pushed the screen right by me to show me my bladder and how there wasn’t even mild inflammation on the lining.

Sophs50522

24-04-18, 12:55

Rectal ... I mean renal. PMSL! Thought it sounded wrong haha

---------- Post added at 12:55 ---------- Previous post was at 12:53 ----------

Ah that's good Jessie. Did you have problems before ? Sorry he spoken to that many people I forget who I've spoken to. Hopefully cattia they will refer you now if you go back down
It's been 2 months since I've requested a referral and still haven't heard nothing :(

cattia

24-04-18, 17:37

I think last time I had it it lasted a few weeks, not as long as this. Funnily enough, drinking more water just seems to exacerbate it. I'm going to push for a referral when I go back later this week as it's not getting any better.

Emc

24-04-18, 18:20

I begged the GP to refer me for a scan of my bladder & ovaries etc today. I’ve been busy this afternoon& my symptoms have been a bit better but returning to their normal pattern now. *sigh*

Sophs50522

24-04-18, 18:51

That's same with me cattia. My gp told me at first to flush flush flush. It made me double over with urge to pee.
The less I drink the better for me!
How long did they say for the meds to work EMC?
Both try asking your GP's for a prescription of hiprex.
An antibacterial medication that's suppose to flush out the bladder. It's sold in Australia pharmacies
It can be bought on eBay if you wanted to give it a go!
Prelief is also good if med for taking the acid out of food and drinks ( if this becomes a lifetime problem ) but let's hope not

Emc

25-04-18, 10:09

I’m in a complete panic today. Convinced this is all neurological, that I have a brain tumour & i’m Going to die. No-one believes me because of the anxiety but there is something wrong with me.

jessygirl77

25-04-18, 12:34

I completely understand how you feel , completely !!!!! But the o my thing you no for sure is that you have anxiety. Anxiety that has been building up about this for awhile now. So everything like emotions about how your feeling and symptoms are going to be super magnified. I understand totally believing “ this is something wrong for real “ and my family saying “ no it’s just your anxiety”.
What if for just today you spent the day reminding yourself you do have high anxiety and only self burying your anxiety. Tell yourself tommorow you will worry about the physical things you think you may have wrong but just for today it’s only gonna be about reading up on how to handle anxiety.

---------- Post added at 11:34 ---------- Previous post was at 11:33 ----------

I didn’t mean to write burying , I meant nurturing

cattia

25-04-18, 14:18

Emc, I know, I have worried about this too, although my thoughts were MS! My frequency is better today but the spasms weirdly are worse. My latest sample came back today, no infection, no blood, totally clear. I guess that's good but it doesn;t give me any answers.
Jessygirl, that is good advice. My therapist is working with me about how the one serious illness I know for certain I have is anxiety, and that is the one I need to work on treating. However it is so hard for me to move past these other worries. However ignoring the anxiety is certainly not helpful and I know for sure that even if it is not the cause of my current symptoms, it certainly makes them worse and harder to live with.

Fishmanpa

25-04-18, 14:52

Cattia, I posted yesterday but deleted my comment. You've had this issue for over ten years based on your post history. If it were sinister, you wouldn't be here. You know this and you know full well this is a result of your anxiety. And yes, drinking more will increase your frequency but that's just human biology and frankly, not drinking enough can cause more issues!

I get it, people get infections that exasperate the real physical symptoms but by now, you have to try to accept that this is not sinister.

What does your therapist think about you posting here for reassurance?

Positive thoughts

katniss

25-04-18, 15:07

Do you guys find that soda makes things worse? And trust me Cattia, I have that same sore feeling. In fact I can recreate that soreness just by touching the area. One thing that I have considered for myself is an ovarian cyst; there was a 2cm cyst that showed up on my ultrasound. They referred to it as a follicle and said it’s too small to cause pain. But I have a feeling I keep getting cysts that are causing this pain. I can tell when I get them because bending over hurts and I get cramps. And when they rupture my abdomen gets sore. So perhaps the cyst is causing discomfort to my bladder. Of course my biggest worry is ovarian cancer but I am just hoping that my age and history of hypochondria can reassure me that I don’t have that :( Bah

Emc

25-04-18, 16:56

So I stepped away from the internet for a while & have somewhat managed to calm myself down.
Jessy - that’s very good advice. Thank you.

I’m just sore & fed up today. I know there have been significant stressors that have made everything worse but it’s hard not to focus on the bladder stuff. I feel like I can’t relax enough to empty my bladder properly today which isn’t helping the overactivity. My IBS is acting up too which is a pain (literally). My GP casually dropped in MS as a potential diagnosis Cattia & although i’m Not overly worrying about that it is constantly at the back of my mind. My uncle & brother in law both have MS so i’m Very aware of the symptoms etc - there are some things that would fit with MS for me (dizziness, right arm clumsiness, blurred vision) but I think those things are more likely explained by anxiety if i’m Totally honest.

Sophs50522

26-04-18, 11:35

Carbonated drinks definitely make me Worse katniss as So do alcohol! Although i did have a glass of wine other week and even Though i Was having a bad few days it didnt make me feel any Worse. Maybe its just carbomated drinks That set me off as i know beer made me So Sorry down There.

---------- Post added at 11:35 ---------- Previous post was at 11:34 ----------

Sore*

cattia

26-04-18, 13:57

I have found that alcohol makes mine worse. I don't really drink fizzy drinks so I can't say. I have found that today I feel more like I have thrush or something down there. Kind of general irritation and soreness all the time. So annoying :(
Fishmanpa, I thought the other day when I saw your deleted post that you might have come to challenge me about my anxiety then changed your mind! I like to be challenged and it's good for me, I always appreciate it when done in a supportive way which you always do. It is true that I had these symptoms ten years ago and I've had them a few times since although not for this long. I think getting told I had cervical erosion then getting a UTI almost straight away has really sent me into a spiral over all this.
It is interesting that you asked about my therapist. She knows that I post on here but she hasn't passed much comment on it. We have talked in broader terms about reassurance seeking behaviour and I have a good understanding of the fact that it feeds anxiety yet I still do it. Although this therapist that I have now is trained in CBT, she is using a varied approach with me. I think she feels that if I am able to gain a better understanding of why I am like this and how I have learned to function in this way, then I will find the reassurance seeking less relevant and necessary. I feel that I have reached a point in my life where my anxiety has gone from being a sporadic problem to a constant, pervasive one. I feel that if I could get myself back on meds it would help, but I have three failed attempts at that in the past year, the side effects are just too horrible. I only wish I could have two weeks in bed and just sleep through those first two weeks1

Fishmanpa

26-04-18, 14:56

Fishmanpa, I thought the other day when I saw your deleted post that you might have come to challenge me about my anxiety then changed your mind! I like to be challenged and it's good for me, I always appreciate it when done in a supportive way which you always do. It is true that I had these symptoms ten years ago and I've had them a few times since although not for this long. I think getting told I had cervical erosion then getting a UTI almost straight away has really sent me into a spiral over all this.
It is interesting that you asked about my therapist. She knows that I post on here but she hasn't passed much comment on it. We have talked in broader terms about reassurance seeking behaviour and I have a good understanding of the fact that it feeds anxiety yet I still do it. Although this therapist that I have now is trained in CBT, she is using a varied approach with me. I think she feels that if I am able to gain a better understanding of why I am like this and how I have learned to function in this way, then I will find the reassurance seeking less relevant and necessary. I feel that I have reached a point in my life where my anxiety has gone from being a sporadic problem to a constant, pervasive one. I feel that if I could get myself back on meds it would help, but I have three failed attempts at that in the past year, the side effects are just too horrible. I only wish I could have two weeks in bed and just sleep through those first two weeks1

I deleted it because I felt it might have come across too harsh and didn't want you to feel bad about the length of time you've been struggling with this worry but it really is relevant. Therapy is definitely a positive and as far as meds? My daughter was on Zoloft when she first started treatment for her anxiety and depression. It stopped working and she had a really rough time for a while. She went through three different meds, ramp up, cross taper etc. until she found one that's works for her (citalopram). It wasn't easy but she says it was well worth it to feel better.

As far as the reassurance? I posted a reply earlier...

Therapy is like being on a diet and reassurance seeking is a box of donuts. You won't lose weight eating donuts all the time :winks:

Positive thoughts

Emc

26-04-18, 15:51

Sophs50522

26-04-18, 16:04

Hi guys. Right ive just been to see top urologist professor malone lee and i am So thankful i did.
I have absolutely loads of white blood cells and pus cells in my urine. High infection! I'm So glad That i can finally stop blaming this on anxiety.

---------- Post added at 16:04 ---------- Previous post was at 15:54 ----------

Sorry not trying to put anyone off but if in doubt and You Still dont improve with anxiety medication, oab medication.
Do see him! Xx

Emc

26-04-18, 17:26

I’m glad you got some answers Soph! Out of curiosity did you have white cells on urine dip with your GP? What treatment is he suggesting?

itoldyouiwasill

26-04-18, 17:29

This is a genuine question - i’m Not just being difficult - why is reassurance seeking such a bad thing ...? I mean obviously it on its own isn’t a fix or anything close to it but why does seeking reassurance make things worse? Sometimes it’s the only way I can get through the day ...

Getting reassurance relating to a health matter is a natural human desire. That said, even though it is pretty much universal people do display different levels of requirement. The issue really relates to constant reassurance seeking when somebody has already been told their issue is benign or functional. It is obviously a faulty process as empirically it can be proved to not work. Nobody with health anxiety is reassured by reassurance. The real way forward is to learn from our past experience and to build up the confidence to self soothe ourselves when we are concerned about a specific symptom etc. Health anxiety is in many ways a self reinforcing habit state and reassurance seeking is a key part of the habit.

Sophs50522

26-04-18, 17:50

I had no white blood cells on dipstick tests or urime cultures. They kept coming back clear of infection. He Said They are unreliable tests and that they only detect 50% of infections. He took a look at my urine and within seconds he said its an infection.
He's prescribed me ceflaxacin and hiprex. Need to take till end of august. He will then review. My symptoms should be improved by end of may and That i need to email him if no change just incase i need a change of antibiotics xx

pulisa

26-04-18, 18:07

How did he test your urine though? That's a very long time to be on antibiotics. I should imagine the treatment is controversial.

Emc

26-04-18, 18:33

Is it a low dose of antibiotic for a long time?

Sophs50522

26-04-18, 18:39

He tested it under his own microscope.
It is a long time to be on them but the infection is biofilm. Its deep inside the bladder wall and it oscilates. He has cured many patients and after speaking to some of them on cobf i believe his treatment Really do Work.

---------- Post added at 18:34 ---------- Previous post was at 18:33 ----------

Its 500mg twice daily. High dose

---------- Post added at 18:39 ---------- Previous post was at 18:34 ----------

He Was almost certain my symptoms will eradicate eventually but i guess only time will tell.

Fishmanpa

26-04-18, 18:45

This is a genuine question - i’m Not just being difficult - why is reassurance seeking such a bad thing ...? I mean obviously it on its own isn’t a fix or anything close to it but why does seeking reassurance make things worse? Sometimes it’s the only way I can get through the day ...

The simplest analogy would be to compare it to a drug addict. They know its bad for them but sometimes it's the only way they can get through the day.

Ultimately, they get through the day but need more the next day and the next day and eventually nothing said will make a difference. We see it here in nearly every thread on the forum. There's also a large OCD aspect to HA. Someone with a cleanliness OCD issue will wash their hands till their raw and still feel they're not clean, just like someone with HA will see doctor after doctor and get test after test and still ask a forum of strangers for reassurance.

It's a proven fact backed by psychological experts that it's detrimental. That's something you could google :winks:

Positive thoughts

AMomentofClarity

26-04-18, 18:50

The simplest analogy would be to compare it to a drug addict. They know its bad for them but sometimes it's the only way they can get through the day.

Ultimately, they get through the day but need more the next day and the next day and eventually nothing said will make a difference. We see it here in nearly every thread on the forum. There's also a large OCD aspect to HA. Someone with a cleanliness OCD issue will wash their hands till their raw and still feel they're not clean, just like someone with HA will see doctor after doctor and get test after test and still ask a forum of strangers for reassurance.

It's a proven fact backed by psychological experts that it's detrimental. That's something you could google :winks:

Positive thoughts

Excellent answer.

Reassurance seeking keeps you trapped in the cycle of health anxiety. Its a temporary fix that "feels good" in the moment, but doesn't last. The best bet is to treat the anxiety and maintain that good feeling indefinitely.

I would also add that there's a difference between those who use a forum like this a couple times a year for a brief "has anybody had xyz before" and let it go quickly compared to those who are on here constantly, either beating the same issue to death day after day with 50+ page threads, or constantly coming back with a new issue week after week once one gets resolved.

Emc

26-04-18, 21:27

I feel like i’ve Just been told off ...

AMomentofClarity

26-04-18, 21:51

I ask this question honestly and sincerely....

Do you feel that you get any real long term (more than a few days) of benefit from seeking reassurance?

When I've had long bouts of HA, I never felt that way. Even after I got reassured, the deep seeded fear of illness/death was always there, and it was just a matter of time before it perpetuated itself as a new "illness"

Emc

26-04-18, 22:05

No I suppose not. In that case how do you know when something is real & you should be seeking medical attention then?

itoldyouiwasill

26-04-18, 22:18

No I suppose not. In that case how do you know when something is real & you should be seeking medical attention then?

On a practical level a good idea is to sit and be with the symptom that is troubling you for a designated period of time. When I suffered badly and made my plan this period was for 21 days. Health anxiety thrives on uncertainty, what ifs and maybes therefore allowing this mindset to win out will never see recovery. I know it doesn’t help that the media bang on constantly about early diagnosis etc but this really relates to those ‘normal’ folks who rock up to their GP’s once every 3 years or so.

I found that by following this plan of waiting a designated timescale I wasn’t at my GP reassurance seeking 3 times a week and crucially it also made me sit with the uncomfortable symptom and the uncertainty this brought. Over a period of time my body noise (what I thought symptoms) subsided and I returned to being somewhat logical and objective as to what did and didn’t require attention. It should be noted that reassurance seeking and medical attention are not necessarily the same thing. There is at least an element of logic at play in craving reassurance of a medical expert whilst it is of course faulty thinking to think that reassurance gleaned from a random on an Internet forum or family member will ever suffice for you.

cattia

26-04-18, 22:18

Emc I struggle with this a lot. As I understand it, asking for reassurance keeps us in the cycle of chasing the promise of certainty. Certainly of absolute health and certainty of a future without illness, certainty of a long life, certainty that I won't be in pain every day, certainty that I won't die and leave my children, all these are assurances that I feel I need in order to truly embrace life. However these are things that will never be achieved. Not by me, not by anyone, because life simply doesn't allow that certainty. For me, having health anxiety means that somehow and for some reason, I have lost a sense of balance in coping with uncertainty about the future whilst still being able to enjoy the present. I view the two things as mutually exclusive: I can't enjoy the present unless I can be certain about the future. Seeking reassurance keeps me chasing those impossible assurances. I still do it because I haven't found a way where I am able to live comfortably without having them, even though I know in my logical mind they are impossible to achieve. I think there are a few rules that can help us to judge when we ought to seek medical attention. If something comes and goes a lot it probably isn't deadly. If something has been there less than two weeks, you can probably leave it a bit longer. If something gets less when we are distracted it also probably isn't that bad.
Honestly, it's completely hypocritical of me to even be writing this because I am so so far away from getting a handle on my HA, but I've had it pretty much my entire life so this is just what I've learned so far about how it works.

AMomentofClarity

26-04-18, 22:41

As the last 2 posters have said as well, its important to establish boundaries, and not let the HA control you.

Also, its important to trust your doctors. If you give symptoms time and still feel that something isn't right, by all means go to a doctor. But when they give the all clear, you have to learn to believe them. Chasing test after test, or asking internet strangers what they think about the diagnosis doesn't help anything. Thinking that your 30 minutes of Googling is more insightful than their 10+ years of training always leads down a very dark, anxiety ridden path.

Fishmanpa

26-04-18, 23:01

Excellent replies above and I'll add to it by something I posted in an earlier reply to you Emc...

To answer your question? Having been so severely ill, there's just no mistaking it. When my wife took ill, I was under extreme amounts of stress and believe me, I had so many of the symptoms I read about here. Sleeplessness, twitching, no appetite, nausea etc. But I knew it was stress.

Reassuring yourself often comes down to common sense. A twitch doesn't mean ALS. A chest twinge that lasts a second isn't a heart attack. An overactive bladder, which is a classic anxiety "fight or flight" symptom doesn't mean bladder cancer! And after all, deep down you know it's anxiety as you're posting on an anxiety website right? ;)

Positive thoughts

itoldyouiwasill

26-04-18, 23:11

Excellent replies above and I'll add to it by something I posted in an earlier reply to you Emc...

Positive thoughts

The comment about posting on an anxiety website is very true. In my health anxiety days I had the lot, every cancer, every neuro nasty etc etc...I was convinced. The thing is the conviction was based on panic and the subsequent illogical thought generated. I think in my heart every single time I knew I was ok or that at the worse if my symptom wasn’t generated by physical anxiety then at least it was nothing life threatening. This is something I found in recovery, health anxiety doesn’t respond to facts and logic...if you throw those things at it your mind isn’t receptive to it and the ‘what ifs’ will win out. It may sound corny but actually examining your emotions and getting in touch with how and why you are feeling what you are helps a lot. Guttural feelings and deep down belief can be a guiding light when logic and facts are failing you.

Fishmanpa

26-04-18, 23:33

The comment about posting on an anxiety website is very true. In my health anxiety days I had the lot, every cancer, every neuro nasty etc etc...I was convinced. The thing is the conviction was based on panic and the subsequent illogical thought generated. I think in my heart every single time I knew I was ok or that at the worse if my symptom wasn’t generated by physical anxiety then at least it was nothing life threatening. This is something I found in recovery, health anxiety doesn’t respond to facts and logic...if you throw those things at it your mind isn’t receptive to it and the ‘what ifs’ will win out. It may sound corny but actually examining your emotions and getting in touch with how and why you are feeling what you are helps a lot. Guttural feelings and deep down belief can be a guiding light when logic and facts are failing you.

True... I also believe it comes down to control or a lack thereof as Cattia said. Acceptance is part of the solution as life is all about uncertainties. We can be certain of many things. The sun will rise and set every day etc., but as I've experienced, life can change unexpectedly in an instant. I've also learned that we deal with it. What other choice do we have? :shrug:

The biggest difference in mindsets I see between a sufferer and a non-sufferer like myself is how I answer the question posed on this thread. "UTI or bladder cancer?" My first thought is UTI whereas a HA sufferer would think cancer. Here's an example: Over the last 2 months or so, I've had some really bad pain in my right hip area. An HA sufferer would Google and come up with bone cancer and have a meltdown. You know what I did? I questioned myself: What have I done that is different from 2 months or so ago? Ahhhh... I started two new medications! What are the side effects? One of them is joint pain! Ok... So I wrote my GP asking the question and he said, stop the med and see if it changes. So I stopped today and we'll see what happens. I'm not thinking cancer in the least and I'm a survivor that has had more radiation and scans than anyone here!

I think it's good that this thread has turned into this discussion. After all, the name of the Website is "No More Panic" and the goal is to not panic right? :winks: Isn't the purpose to talk about ways to heal as opposed to perpetuating the cycle of anxiety?

Hopefully we all can help each other to achieve this.

Positive thoughts

cattia

27-04-18, 10:46

This is something I found in recovery, health anxiety doesn’t respond to facts and logic...if you throw those things at it your mind isn’t receptive to it and the ‘what ifs’ will win out. It may sound corny but actually examining your emotions and getting in touch with how and why you are feeling what you are helps a lot. Guttural feelings and deep down belief can be a guiding light when logic and facts are failing you.

This is a really insightful comment and is very true for me. I think this is why I have found limited success with CBT. I can understand using logic that my thinking is skewed and that my fears are very unlikely, but as I think I've said before, getting cancer at some point in life is not that unlikely a scenario and the fact is that my fears, however unlikely, could come true. Also, my ultimate fear is a fear of death and actually that certainly IS going to happen one day.

The comment about getting in touch with your feelings is very relevant for me. I am someone who does not really face up to or acknowledge their emotions very well and I think a lot of the time, I plough my emotions into anxiety and that is how I process them. This is something I am really working on with my current therapist.

itoldyouiwasill

27-04-18, 10:58

This is a really insightful comment and is very true for me. I think this is why I have found limited success with CBT. I can understand using logic that my thinking is skewed and that my fears are very unlikely, but as I think I've said before, getting cancer at some point in life is not that unlikely a scenario and the fact is that my fears, however unlikely, could come true. Also, my ultimate fear is a fear of death and actually that certainly IS going to happen one day.

The comment about getting in touch with your feelings is very relevant for me. I am someone who does not really face up to or acknowledge their emotions very well and I think a lot of the time, I plough my emotions into anxiety and that is how I process them. This is something I am really working on with my current therapist.

Yes. Very often we think that we are being ‘emotional’ with anxiety but of course the emotions we generate are false...both in terms of why we experience them and how we experience them. I think the fear of death, ageing and existential angst underpin and fuel health anxiety extremely often...not always but when most people scratch below the surface those fears are there. If you have found limited success with CBT have you ever considered dropping the C bit (the thoughts) and concentrating on the Behaviours...I honestly believe that behaviour models thought rather than the other way round. A good book for controlling emotions and ensuring you are feeling and honouring the correct ones is The Chimp Paradox by Steve Peters...it’s not about anxiety specifically but it’s very enlightening.

swajj

27-04-18, 11:03

I had a renal CT scan and a cystoscopy for repeated UTIs. Cultures repeatedly showed infections. However even after the infections cleared there was still microscopic blood in my urine. My GP sent me to a specialist after I had the CT scan which showed nothing. The specialist told me that there are 2 gold standard tests for bladder cancer and the CT scan was one of them. But to rule it out completely I needed to have the cystoscopy as well. I did and the results showed no cancer. The specialist then wrote up my treatment plan. First and foremost I needed to drink litres of water to ensure that I urinated every few hours (previously I could hold off urinating for 6 or 7 hours (which I did because I am a schoolteacher). Next I needed to take Hiprex and Cranberry tablets everyday. The goal was that I only had one UTI infection in a 6 month period. That all happened last July and I have had 1 infection since then.

I can speak on the long term antibiotics because it was on my treatment plan but it was preceded by self start antibiotics. Self start antibiotics is what I would have been doing if the first 3 steps didn’t work. So as soon as symptoms appeared I would start taking antibiotics and stop after 3 days. If that didn’t work then it was going to be long term antibiotics. That meant taking a low dose antibiotic for an unspecified amount of time. It was a last resort according to my specialist.

Luckily for me urinating every few hours, Hiprex and cranberry tablets was the answer. Probably the most beneficial part was the urinating every few hours because having a bladder full of urine sitting there for hours is a perfect breeding ground for bacteria.

I’m no doctor but it seems to me that before reaching the point of taking antibiotics long term the 2 gold standard tests should be carried out.

Emc

27-04-18, 12:26

I think Soph has never had blood in her urine so she doesn’t need CT or cystoscopy because cancer isn’t the concern.

pulisa

27-04-18, 12:54

swajj

27-04-18, 13:07

I think Soph has never had blood in her urine so she doesn’t need CT or cystoscopy because cancer isn’t the concern.

ok I didn’t realise that, guilty of not reading the whole thread. The renal CT scan doesn’t just check for cancer.

I do wonder what the specialist told her about taking high doses of antibiotics for 4 months or longer because my specialist said that even taking low doses long term can lead to other issues. Also, and once again I’m not a doctor, but a cystoscope would allow the specialist to look around inside the bladder so I’m surprised that no tests at all have been done. Then again, my specialist never mentioned that a UTI can be so deep inside the bladder that it can’t be detected. I don’t want to start doubting my own specialist’s abilities for obvious reasons so I won’t think anymore on that. lol

Josh1234

27-04-18, 14:36

My doctor just found blood and protein in my urine after almost 9 months of cloudy urine. I did a more extensive test last week, and everything was clear. The body is weird. If you have cancer, you're gonna know it, more often than not.

cattia

27-04-18, 18:31

Cattia, do you fear how you would cope mentally if you were to receive a cancer diagnosis or would it be the physical side of it and the treatment? Or both?

I think I fear the fact that it might kill me. I do fear the treatment but that's not the worst of it. I think the real fear is that it could kill me and that even if I got cured it could come back so I could never relax again. I'd always feel close to death.

pulisa

27-04-18, 19:41

I think I fear the fact that it might kill me. I do fear the treatment but that's not the worst of it. I think the real fear is that it could kill me and that even if I got cured it could come back so I could never relax again. I'd always feel close to death.

But you actually don't know that this is how you would feel. You are just making an informed guess based on your HA. Your fears haven't been realised yet you live in fear of the possibility that they may be. Do you find your therapy is helping? Does comparing symptoms on threads such as these really help you or does it keep you fixated on the physical issues?

itoldyouiwasill

27-04-18, 19:52

I think I fear the fact that it might kill me. I do fear the treatment but that's not the worst of it. I think the real fear is that it could kill me and that even if I got cured it could come back so I could never relax again. I'd always feel close to death.

Interestingly all the work I used to do with health anxiety folk contradicts those thoughts. Obviously a health anxiety sufferer has the same chance as anyone else of becoming ill and I have to say that the vast majority of those who did become ill reacted far differently than they imagined they would do. Most survivors of trauma or serious illness find their outlook on life changes hugely and they find a capacity to grasp and enjoy life which my not have existed previously.

Sophs50522

27-04-18, 22:00

Hey swajj, Emc is right .. ive never had blood in my urine so thats not a concern to him. I have lots of white blood cells in my urine that he checked under his microscope himself. My body is fighting an infection.
Cystcopies are useless unless a biopsy is being done for cancer. He has had 1000s of patients who Have undergone cystos,urethal dilation,bladder instills, oab meds,low dose antibiotics and their urologists still cant find out what is wrong with them. They tell them they can't help anymore and they have interstitial cystitis... which is an auto immune disease where your body attacks its own bladder leaving it inflammed majority of the time. This is actually very very rare and urologists are diagnosing patients with it because they can't find an answer.
This is where my specialist comes in. He examines your urine as fresh as it can be. Not like the standard nhs procedure where it is sent off to a lab and a machine tests it for you!
If i had frequent uti's like you i would fight it differently. Drink more water, shower after intercourse etc but i dont have that. Its not as simple as it going away after 3 or 4 days like a standard Uti.
What i have is a chronic biofilm infection. Its deep in the bladder wall. No low dose antibiotics will touch it.
His treatment is high dose and hiprex so the bladder is constantly clean basically until all bacteria is killed as they release themselves out of the wall of the bladder.

High dose antibiotics do indeed sound terrifying but id rather that than go through all the procedures that could even leave me incontinent ?
I have spoken to ladies who are now symptom free on his treatment after years of pain with nhs.
I cant see how he would still be able to practice under both nhs and privately as a leading urologist in London if his treatment didnt work ? I guess i will have to find out for myself.
Hope this info helps.

swajj

28-04-18, 04:17

Not going to get into a “my specialist is better than your specialist” stupid discussion. I will say that I doubt that mine would say the gold standard tests for bladder cancer are the 2 I previously mentioned. A cystoscopy allows the doctor to actually seen inside the bladder. Yes it is useful for doing biopsies but common sense dictates (and the doctor states) that it also allows the doctor to get a good look at the bladder wall. Whilst certain types of imaging will show up potential cancers etc, some are small enough that they are only visible to the naked eye. However, you need to trust your doctor so you are right to believe he is an expert in his field. The same applies to me.

For anyone interested, in Australia, you do not need a script for Hiprex, it is available over the counter.

---------- Post added at 12:47 ---------- Previous post was at 12:40 ----------

I just remembered that my doctor also said that a cystoscopy also helps to identify “hidden” abnormalities.

Emc

28-04-18, 07:38

The only thing I will say about Prof Malone Lee is he isn’t actually a urologist. He’s a physician (actually a geriatrician) with an interest in urinary tract symptoms. That isn’t to say that he doesn’t have a lot of experience and knowledge about this kind of thing - he absolutely does. But in all likelihood he dodsn’t Actually do cystoscopies inc dilations/installations himself so that probably has an impact on his approach (not necessarily negatively - my experience is that surgeons love a good investigation & procedure where physicians tend to use their clinical judgement more).
I don’t know that it’s terribly helpful here to suggest that Soph needs extra tests or that her specialist is wrong - especially given that this is a HA forum. Ultimately Soph is happy wit the treatment plan & that’s all that matters.

cattia

28-04-18, 07:41

These seem to be two different ways of addressing infection. The specialist that Sophs has seen treats biofilm infections that can't be diagnosed by a standard urine culture. Unfortunately hiprex isn't available in the uk other than on prescription and my understanding is that it isn't commonly prescribed under the NHS so it's hard to get. We can buy it online but have to pay massive postage costs from Australia or New Zealand.

The question about whether it makes me feel better comparing my symptoms is interesting. It does make me feel a lot better, mainly because I know I'm not on my own. Whether it keeps the focus on the symptoms is a different matter. It probably does but I appreciate being able to connect with others who have the same issues and who also understand the anxiety side of it as well. I feel that I've learned a lot about the different ways of addressing infection from talking to others on this thread and that honestly been helpful for me. I also appreciate when people challenge me about my anxiety too.

Sophs50522

28-04-18, 08:26

Swajj.. how exactly was i comparing? You said you didnt know why he would prescribe such high doses of antibiotic treatment and i just explained it to you.
I didnt once knock what treatment your urologist has set for you and i didnt say it wouldnt work either. Im not stating everyone here has a biofilm infection and needs his treatment. I am just helping everyone with other treatment options to consider if no other treatment have helped like some ladies i have spoken to on the cobf forum.

---------- Post added at 08:26 ---------- Previous post was at 08:07 ----------

Emc .. your right. This is a HA forum and i suffer terribly with it so suggesting my urologist should rule out cancer first sends my anxiety spiral again. I spent months blaming my problems on my health anxiety and to just finally see someone about my blader problems was really reassuring just for swajj to knock me back again.

Cattia i agree, regardless of what urologist we see and what treatment they have given us in this forum it's always nice to hear what diagnosis and treatment they are set with our symptoms being similiar.
My treatment might not even work so by hearing everyones stories and their experience with other urologists could send me down a route to try out their treatment plan and so on

cattia

28-04-18, 09:17

Sophs, from what I've read about bladder cancer (which is definitely more than I should have) blood in urine is the main red flag which is probably why swajj's consultant wanted to rule that out. You didn't have that so don't worry. I had microscopic blood in two consecutive samples which is what started me freaking out. My last two samples were clear and my doctor is sending one off to the lab so hopefully that will be clear too.

Emc

28-04-18, 09:55

Soph your symptoms just aren’t in keeping with bladder cancer. If you’ve never had blood in your wee it’s incredibly unlikely. It sounds like Swajj had a different problem & yes if cancer is suspected cystoscopy & CT are needed to rule it out but that’s not the case for you so please don’t worry.

megsi99

28-04-18, 11:41

Hi all, this thread was so helpful to me as I’m going through something similar. I had a UTI several weeks ago and since then have just felt off. Bladder pain and urethra irritation. I went back to urgent care a couple of weeks ago and they did a culture - no infection. The last few days haven’t been great and I’m anxious it is a UTI. I have an appointment on Wednesday, do you think there’s any problem with waiting until then? I don’t have burning when I pee or any typical symptoms. I also did a couple of home tests and those were negative.

Sophs50522

28-04-18, 20:11

I really hope not guys. What an awful thing anxiety is. It drains the life out of me!
Hey megsi99 .. it's a briliant thread isn't it. Really helpful.
Yours could just possibly be inflammation from the UTI? I have heard sometimes it can take a while for your bladder to calm down. But no harm getting it checked out if things still persist ( hopefully not )

Josh1234

28-04-18, 20:26

Unless you can actually see blood, I doubt it's an issue

Emc

28-04-18, 20:28

So I learnt a lesson today - hot curry & my bladder are no longer compatible. I’be had the day from hell with my bladder & no sign of it settling any time soon ��

megsi99

28-04-18, 21:14

Oof, sorry EMC. I’ve learned the same over the last few days - kombucha, bittersweet chocolate and tequila (I thought one margarita would be okay, it was not!). All not good.

swajj

29-04-18, 06:40

I wasn’t suggesting that sophs might have bladder cancer. Let’s not forget though that part the thread title is “bladder cancer”. If you go back to my earlier posts on this thread you will see that I stated that even though I had blood in my urine tests showed I did not have cancer, so white blood cells, red blood cells, protein etc etc can all be present in urine and mean absolutely nothing. My concern is more about the long term, high dose antibiotics. Especially as no other investigations have been done. There are risks associated with taking high doses of antibiotics for long periods of time, hence the reason my urologist had it as the last step in my treatment plan. My only other issue was with Soph’s claim that a cystoscopy is useless unless it is being used to perform a biopsy. That claim is completely wrong and one would hope that it wasn’t something said to Sophs by her doctor.

Finally, this is a health anxiety board. Most people (not all) end up here because they have health anxiety. Urinary problems are a common occurrence in people with health anxiety. So it always has to be considered that symptoms could be a consequence of the health anxiety. I came to fear UTIs so much that I experienced symptoms even when I didn’t have a UTI, because of my health anxiety.

---------- Post added at 15:10 ---------- Previous post was at 14:24 ----------

Just a suggestion that works for me:

I avoid reading certain threads because I know that there is a chance that at some stage the information I glean from them might come back to “haunt” me. If I was that anxious about something like bladder cancer I most certainly would not open and read a thread that had “bladder cancer” in the title. Sure if the title was “frequent urination” but the content was mainly related to a discussion about bladder cancer I might accidentally get caught out, but even then I would exit the thread...not keep reading it! Come on, the onus is on the reader in such cases.

cattia

29-04-18, 07:58

I Urinary problems are a common occurrence in people with health anxiety. So it always has to be considered that symptoms could be a consequence of the health anxiety. I came to fear UTIs so much that I experienced symptoms even when I didn’t have a UTI, because of my health anxiety.

This is where I feel in such a pickle Sajj. I find it entirely believable that my symptoms are the result of anxiety but I'm also now needing to find assurance that they are not the result of a hidden infection. I honesty thought two months ago that my symptoms were psychological because they weren't classic UTI symptoms. It was only because a friend persuaded me to drop a sample into the doctor that I discovered I had blood and leukocytes in my urine. So now I'm worried that there's something hidden or chronic going on. I too am scared about the thought of long term antibiotics but I'm also scared of not finding a cure and putting it all down to anxiety when it isn't. I really feel stuck with this and unsure how to move forward.

Emc

29-04-18, 08:09

I really don’t understand what’s going on with me. Yesterday my symptoms were awful - literally a constant need to pee even when i’d just gone, difficulty starting to go (like I just coyldn’t Relax enough), terrible burning pain in my urethra. Lasted all day long. Improved slightly in the evening - managed 30 mins between bath room trips. Then when I was asleep it was fine! Woke at 3.30 needing to go & I did - normal volume, no hesitancy, no pain, no leakage. All absolutely normal. Been up since 6.30 - first wee was fine but burning started afterwards. Been twice since & now the hesitancy is starting & i’M hurting. I have a constant awareness of that area & feel like I can feel leaks all the time even when tgere’s Nothing there which is making me run to the toilet more, making the pain & frequency worse. I’m at a loss.

cattia

29-04-18, 08:51

Emc I'm the same. I woke up once in the night and went with no pain at all, but the flow seemed slower and by the end was just a dribble (maybe that's normal, I've lost track of what's normal now). Yesterday I had a weird pain in the bladder area all day, worse after I'd just been. Like the discomfort you get when you're really dehydrated and your wee is too concentrate. This morning was fine first thing but now back to normal. I noticed last week it was better when I was distracted but now I've got chronic low grade infection in my head and I'm constantly obsessing over it. Imagining a future where I'm like this forever, blah blah blah. Got my son's birthday today so hopefully that will distract me. This is totally gross but I've also started weeing in the shower (I do clean it out afterwards!) When I do this I get zero pain or irritation.

Also my frequency has been much less, only went three times yesterday in the day but then twice in a row in the night.

Sophs50522

29-04-18, 22:21

Emc are you still on the meds?
How long do they take to kick in?
I also Thought chinese was a major trigger for me When i had it for first time since my bladder problem but now i have had it 4 times since with no change at all. So must be random for me. I even drank orange fanta Yesterday.. no flare up with that either weirdly.

I tell you what I've noticed. My urine flow is very slow to a point where i can just about feel it coming out when im having bad days but on good ones my urine comes out fast like it has been the passed 5 days now.
The prof told me slow urine flow and sore uretha is due to thickening of the bladder and uretha walls during inflammation.
Whether he's right i don't know but it's interesting to know!

katniss

30-04-18, 04:18

I sometimes have the slow urine too or weak stream. And other times it’s normal and fast. But I tested negative for any sort of infection. The Tumor pressing on bladder freaks me out. But I had an ultrasound 3 months ago that was clear. Surely a tumor would have shown? :( I only had a 2cm follicle show, and they said that would not be a cause for pain. I also get the dribbling cattia! It’s so strange!

Emc

30-04-18, 12:58

I ended up in ED this morning ... bladder symptoms awful & completely panicking about other things too - clumsy hand, funny vision. Ended up with a CT brain, CXR, bloods & quick bladder scan - all normal. Also outpatient referral for MRI head & spine.
I’m incredibly relieved that someone is taking me seriously & even though I am apprehensive about the tests showing something at least they’re being done. So in combination with the US pelvis I asked the GP to request I feel like all bases are covered.
In the meantime I am seriously going to address my anxiety - waiting for my psychiatrist to call back about increasing citalopram, going to see if my therapist can fit me in for an extra session (she missed Saturday’s) & try to get my head sorted so *if* something does show up I can deal with it.

katniss

30-04-18, 14:16

Sorry you’re having such a hard time EMC. But it’s fab that you’re getting tests done - hopefully they will all be normal results and you can finally relax knowing that all is well and the problem is due to anxiety. I am too scared to go in for another ultrasound :( Just hoping that my ultrasound from a few months ago is all the hope that I need that everything is okay

Sophs50522

30-04-18, 15:44

Wow emc. I'm really glad they have taken you seriously and i bet it's such a relief to have the results back as normal.
I have been having neurological issues before the start of all this and i have been begging my gp to test me for lyme disease but he insists it's all anxiety ...
I do think it's my symptoms causing my anxiety more though!

cattia

30-04-18, 18:27

I'm sorry you are feeling so bad Emc but it's really positive that you're getting somewhere with testing. My latest urine sample came back clear again (my fourth one in a row now) and I'm waiting on a pelvic swab which was done last week. I had a transvaginal ultrasound in December because of ovarian pain which was normal and waiting for my smear in May, just urologist left to try. My frequency is massively reduced. Just got general pelvic pain and discomfort after urinating.

Emc

30-04-18, 18:42

I have the worst spasms & pelvic pressure tonight & guess what? Now I know I don’t have a brain tumour my mind is telling me there’s a big tumour in my pelvis squashing my bladder. I should have expected it but still. Actually feel like i’m losing the plot altogether!!

katniss

30-04-18, 19:53

Cattia - so glad your frequency has decreased. Must be such a big relief!

Emc - I have the SAME fear! So scared of a tumour squashing my bladder, and I’m so paranoid that my ultrasound in Feb missed the Tumor. Bah. Hate feeling this way. Hope your results come out normal. Do you have an ultrasound scheduled as well? Or has it already been done?

Emc

30-04-18, 21:03

GP had requested an ultrasound - hoping it will be done in the next couple of weeks.
Does anyone else ever feel like they literally can’t empty their bladder - like there’s urine left all the time that you can’t get out no matter what you try?

katniss

30-04-18, 21:05

Yep! That’s me :( I can just feel the discomfort all the time. And it’s strange to describe but even if I’m sitting and I change positions that area obviously rubs against wherever I’m sitting and it mimics that feel of having to go. It just feels like I constantly have a little pee left over

cattia

30-04-18, 21:50

I think I actually do have pee left over because I empty out as much as I can then if I sit there for another few minutes suddenly a second lot will come out. Not a lot but a bit left over so I think I have incomplete emptying. Not even going to dare Google what that could mean! My biggest issue is the feeling that my urine is really concentrate every time I go even though I know it isn't.

Mel_82

01-05-18, 00:21

I went for a routine urine test about a year and a half ago.
They discovered I had blood in my urine. It was present without infection.
I of course googled this and panicked. I convinced myself I had Stage 3 bladder cancer.

I saw a uroglost, he did an ultra sound of my kidneys. I was POSITIVE that he was gonna find cancer - no cancer.
He did more urine tests and a cancer marker urine test. Again, I was POSITIVE he would find cancer. No cancer.

Because I’m an ex-smoker the urologist said he’d do a cystoscope (camera up te urethra) to check things out. I was POSITIVE he’d find cancer in there. No cancer.

Turns out blood in the urine is my normal (and perhaps caused by an ovarian cyst) - however it’s not cancer or life threatening.

Once this happened to me I have heard of other people with the same story of blood in their Urine and nothing wrong.
It’s not uncommon at all.

Sophs50522

01-05-18, 11:04

I always thought i couldn't empty my bladder properly as i had that discomfort after peeing like i needed to go again but when i had an ultrasound they scanned me after emptying my bladder and said it was empty but the discomfort was still there.

I have beem symptom free now for 1 week. I haven't started my antibiotics yet as I'm waiting for the symptoms to return.
Ive had takeways,pop,wine trying to see if my symptoms will return but nothing!. Really weird.

Mel that's interesting. I have heard a few people say They've been told blood on urine is normal in most cases.
I just think it's always that 'what if I'm one of the unlucky ones'
Joys of anxiety.

katniss

01-05-18, 14:17

How long did you suffer from this sophs? And did the antibiotics make you symptom free or was it knowing that everything is okay? Would love to be symptom free!

Sophs50522

01-05-18, 14:41

I took 3 days worth of antibiotics at the start but did nothing. I have had mine now since start of december,
I was symptom free for 9 days at end of December and had a glass of coke thinking i was okay and it came back the next day but this time i have had coke with no change. It's so weird!
I have no idea what hav made me symptom free but not the meds as i haven't taken them yet.

My urologist did say that the bacteria calms dows now and again but soon as the bladder lining starts to shed ( because our immune system have detected an infection ) the bacteria activates and starts to multiply again.
Interesting hey!
Going to wait now for it to 'activate' and will start my meds.
I feel absolutely normal now. Can't quite get my head around it.