interstitial cystitis!! Anyone!

[Hollytree]

Hey there

I've suffered from IBS now for about 2 1/2 years, so lots of bloating, stomach cramps and feeling tired. From August last year, every time I got IBS i started getting 'irritable bladder' with frequent trips to the loo!! I have no idea how ibs and frequent peeing is related, but my doctor tells me it is!! I have had urine tests done, all came back normal.

Does anyone else suffer from frequent peeing and IBS?

Thanks

[lauren6]

Holly, your header says interstitial cystitis but have you actually been diagnosed with that?

I have IBS but no frequency of urination except when I am anxious. What makes you think you have interstitial cystitis?

[Hollytree]

Hi lauren6, my doctor mentioned it, and said that it does happen on occasion with IBS.

[Hollytree]

I have also been told by another doctor that it is 'irritable bladder' not sure if these are the same, just know that it hacks me right off!!!

I have looked also at a reliable source and it does say that frequent urination 'can' happen with IBS, i was curious if anyone else suffers the same.

[lauren6]

I hope you find some answers. It's a hard disorder to diagnose and you might want to start researching a good urologist in your area if your symptoms really become bothersome. Intersistial cystitis has more symptoms than just needing to pee a lot. I also thought I had it once, my imagination ran wild but the feeling passed. I also have IBS and I think we just have a delicate system from what I have seen with friends with IBS (I also have fibromyalgia on and off for years). Something always hurts or feels different. I hope you feel better soon, hope it's just nerves.

[Hollytree]

Thanks Lauren6, i know that when your nervous, yes, this came make u pee more, but this is not the case here. I also have many things that are connected, I 2 have Fibromyalgia, doctor has given me Amiltriptiline to help with that. So i have that, IBS and frequent peeing!! the list goes on!!
Over here in the UK its hard to get referred unless of course its something that's needs to be investigated further, but my doctor doesn't think it is necessary. However if things do get worse i will seek another opinion.

[daisy76]

Hi

I also have fibro and having tremandous problems with IBS and irritable bladder.
I have had urine tests all came back ok, what other symptoms do u get with IB? I have a feeling like cystitis but its not all the time, burn when i pee and i get a discomfort after i have been to the loo.
I am going for a scan next week just to check it out as my HA has heightened since i have had this. I am on many meds, 1 being for this problem but i dont think its helping.

Please feel free to pm me anytime.

Take care

Karen xxxxxxxxxxxxxx

[Darwin73]

I have also been wondering about this. I have suffered symptoms since I gave birth 6 months ago and had a catheter for 12 hrs: stinging when I pee, some urgency and a sore/uncomfortable bladder feeling afterwards. Urine tests have always been negative. I am phobic of Drs as well as suffering health anxiety so I have not been back, but after commiting the cardinal sin of googling I am scared I have bladder cancer.
Anyone else have the sore bladder feeling after peeing?

[Hollytree]

Hi there, thanks for your responses, still have the IBS/irritable bladder going on, at the moment i feel like i have been stabbed in the stomach, also have bloating as well. I spoke to a chemist over the weekend and she told me that IBS and irritable bladder does occur. When we get bloated it pushes on the bladder. I am also told that it is common with anxiety, i was told i have an over wrought nervous system from my anxiety, which does explain alot.

Just really dont like the feeling and pressure that it has on my bladder, as well as the pain and bloating :(

In response to your post, Darwin73, Yes i do get a sore bladder after peeing, well it feels more sensitive than sore.

[Hollytree]

I'd also like to add that my spasms in my stomach are felt along the line across the belly button, and sometimes just below it, when i push in all around that area, it feels really tender and painful.

Does anyone else get that kinda pain in that area to?

[jessieblue]

Hi therer ladies, just seen this thread. This is exactly what I am going through at the moment! I had lots of bladder trouble last september when I was on holiday. Thought I had infection but nothing showed up. The problem went on and doc said it could be interstitial cystitis. I googled and came up with hoffific experiences of people with tiny bladders that had to catheterise themselves etc! I was so terrified, I had urodynamics test done, didn't tell me anything I didn't already know and I was due to have cystoscopy (only cos I went private) I never had it done because I bottled out and my doc had put me on amitriptyline, which slowly seemed to work. After 6 months I am having another bad spell. I am convinced I have cancer down there now. I get the urge to go and sometimes I do go loads then sometimes nothing, then the soreness in the bladder after going. That constant niggling feeling and also I feel as if I may pee myself, like my bladder is going to contract and squeeze some out! I havn't done so yet, but I am so afraid I might. Other times I can go 3 hours between visits! I think its worse if I have IBS and even a little gas can put pressure on the bladder. Also my period seems to make it worse, especially if I have a bad one.

Any more tips anyone? Could this just be another highly sensitised area we are focussing on and noticing every small feeling that other people wouldn't pay too much attention to?

Do you all manage to live with these problems and still get on with life? I find I am afraid to be too far away from a loo.

[Hollytree]

Hi there jessieblue, its comforting that others out there are going through the same thing as me. I saw my doctor yesterday and he said it's 'irritable bladder' and that its something that is connected with my IBS. I also did a urine test and it was clear, no sign of infection at all. What is getting me down and freaking me out and what I really hate is the sensation of wanting to pee all the time, even though i am only peeing 7-8 times a day. Normally i pee around 4-5 times a day. I have been told to resist the urge to go and try and hold it starting from 1 hour then 2 and so on, to help strengthen the bladder muscles. I to get freaked out my this, i DON'T Google, my doctor has said that all my blood tests results were all normal so that is a good sign, i also shouldn't worry about bladder cancer and ovarian cancer. As i don't have the symptoms, however these two are my biggest worries at the moment.

I am waiting for it all to just stop and settle down again, its been 5 days so far, the last time it happened it went on for 10 days!!

I can't even tell you how much its all upsetting me right now.

Thanks xxxxxx

[lauren6]

Jessieblue, you said:

"Any more tips anyone? Could this just be another highly sensitised area we are focussing on and noticing every small feeling that other people wouldn't pay too much attention to?"

I think you are so right. I went through a bladder cancer scare and had a cystoscopy done. I was totally fine afterwards then started thinking about it and the awareness has made me focus on that area. Now I feel sensations like pressure and just awareness, hard to explain. I don't want to think about having a bladder and a urethra. We don't think about having eyes or a nose, it's just there (unless we focus on it). It is SO depressing to imagine sensations and I think I am actually bringing on this discomfort.

The worst part for me is the psychological part that why am I doing this. Will I dwell on this forever and let it ruin my life. Will I never have a relationship with a man again because I am afraid of sex stirring up these sensations? I feel like I am going to go mad and wish I could stop this obsessing. Please tell me if you (or anyone reading this) feels the same and understands. It is not bedtime and I feel like sleeping just to escape these torturous thoughts but what kind of living is this? I can't sleep away my life but when I get like this, I can't enjoy anything else because I am so angry at myself for being this way. It blocks out all of my pleasure and creativity, I feel like why bother doing anything, learning anything. This is awful. I also need some advice before this gets worse and I fall into a deep web of depression.

[Darwin73]

lauren6, I totally know where you're coming from regarding the dwelling on this and letting it take over your life. I keep thinking, "will I ever be normal again?" I have been going through this for 6 months now. Although I only pee 3 times a day, I dread going every time and sometimes hold on for a couple of hrs or more which I'm sure is no good for me. I get a stinging feeling almost everytime I go and then get a sore feeling behind my pubic bone in my bladder that seems to last for hours. It is so demoralising.

I have never been diagnosed with IBS, but I do find my stomach churns a lot and my bladder / peeing hurts more after a bowel movement. Don't know whether this is connected at all. I would be too scared to have a cystoscopy (used to work in a urology department and seen plenty done).

Hollytree, like you my current worries are bladder/urethral cancer and ovarian cancer. I have 3 young kids and feel like a can't be a proper mum to them as am always in a bad mood due to worrying about my health.:scared15:

[SleeplessFog]

Lauren, I can totally relate to you. I have been having a bad 2 days with my anxiety and I am dwelling a lot as well. I sometimes feel like it is taking over everything in my life and I will end up annoying my husband with this. I feel like I have 2 sides bickering in my head when I get weird sensations...rational me saying "ok,you've had tons of test..you are ok" ans the other me saying "so why do I keep feeling these sensations and symptoms...maybe they missed something"

But I know that I am healthy. I have just become really sensitive to the things going on with this illness I have. I want to say its temporary, but I secretly fear that this is what life is going to be and I am personally fed up with it. I had such a good week last week...and this week is just uuugggh. :lac:And yes, I feel the same way about "why bother?"

Sometimes I don't think 1 day a week at CBT is enough for me :blush:

[Hollytree]

I can relate to this, and certainly that dwelling on a symptom makes it worse. I recently spoke to a doctor and he said that my problem with frequent urination is to do with nerve responses, and that my nervous system is 'over sensitive' probably to do with my anxiety levels and that EVERYDAY i flood my body with hormones and adrenaline, its not surprising my body is going crazy, I'm not allowing it to rest.

My doctor has prescribed me Amitriptyline 10mg every evening. He said that hopefully in time things will settle down and get back to some kinda normality. I hope so, as this peeing thing is driving me crazy!!!!!

Has anyone else taken Amitriptyline?

[lauren6]

Hi Holly, I did take it many years ago for chronic pain but I took more than 10 mg. I forget the dose, can look it up. It put me in a better mood, helped the pain a little. Gave me a dry mouth...if this happens, easy to fix. There's something called Biotene mouthwash and gum. I really didn't bother with it though.

[Hollytree]

Hi lauren6, thanks that helps alot, i think my doctor wants to start me off on 10mg and gradually increase the dose.

Did you find it helped you sleep, and does it make u feel sleepy during the day?

[jessieblue]

Hi everyone. I so relate to all these feelings. I am sitting here crying right now because I hve had these bladder sensations again for 10 days and all morning I have been worrying about the possibility of bladder or bowel cancer. I am so convinced that all these problems are caused by something sinister, but on the other hand, I know my nerves can cause me to obsess about whatever is goping wrong t the time and make it so much worse. The troule is, I always imagine the worst case scenario. I can imagine my bladder getting worse and eventually being incontinent, or not being able to pee at all and needing a catheter due to blockage or something. Sometimes when I go, I have to strain a little to get any out, does anyone else feel this? Other times the flow is fast. If I am constipated, that seems to put pressure on my bladder and cause more urge and irritation. Then I worry I have massive bowel tumour pressing on bladder. I also bleed from the back passage sometimes and have sore areas from straining, another form of cancer???

It goes on like this everday. I am afraid my sex life will disappear as I feel I am all messed up down there and I afraid sex will irritate it. I am terrified this will push my husband into an affair with a woman who is "normal" He just doesn't understand my worries and gets a little cross with me when I get upset or want to talk about whats worrying me. I have a ten year old son who still needs a mum, otherwise I don't think I would feel like carrying on. I feel guilty that he has a mummy who is always sad, grumpy and in bed ill. I want to go to the doc, but just get fobbed off when I do and I am terrified of the tests that I will have to undergo. Really don't know which way to turn and have nobody to talk to, my family are pretty much sick of me I think!

Hollytree, I was put on 10mg amitriptyline last October for my bladder and it was a miracle drug for me. Up to 10 days ago my bladder had completely calmed down and was less frequent than ever before. I guess maybe I need to up the dose of the amitriptyline. It does take a few weeks to work, so don't be disappointed if it doesn't have an immediate effect.