View Full Version : Convinced I have interstital cystitis
My bladder always feels full even after peeing, I've been getting frequency on and off too. When it doesn't feel full I can feel some kind of pressure inside (like when you hold a balloon tightly at both ends and the middle is pressured). I'm getting bladder/muscle pains when I move, laugh or stress out. It also flutters/twitches and throbs when I move alot. (I would say spasms but they don't hurt) and I usually get urethra stinging with it too. My vagina stings sometimes too and when I press on my vagina after I pee it feels full of fluid. I'm getting alot of clear discharge too since a month ago (all this started about 3 months ago) a lot of the times it seems to have red or black dots, no other colour so I think it's blood. My urethra feels weird after I pee too, like it's starts trying to squeeze as if there's more fluid (which I can feel but it won't come out).
My flow is very weak and last week the doctor said I traces of blood in my urine but no infection. I'm wondering if the traces were contamination from my vagina. Antibiotics hasn't helped once through all this. I'm so scared. When I search the symptoms it seems it could possibly be an obstruction but IC also comes up alot too which is my biggest fear! My symtpoms are so random, they come and go, some could be completely better while the other is worse. I've made a food diary but nothing seems to trigger it at all - my only hope that It's not IC. I would believe it's anxiety but the blood in urine scares me (I know it's stupid but I hope it was just contamination from my vagina since I have more fears about IC and bladder cancer than vagina stuff).
I've been to the doctors alot about this and they've referred me to a uro-gynocologist, I hope I'm not getting a camera up there because it seems very risky. While I'm waiting to see them, I don't know what to do with myself, this is ruining my life and I'm supposed to be happy - I'm getting married next month! :( Does anyone have simlair problems? I feel very alone in this.
Hey check out the thread uti vs bladder cancer Iam in the same boat my symptoms started after uti and stupidly googling ic read that thread it’s very helpful my urogynae also recommended cytoscopy but i declined as it could be a risky thing
WiseMonkey
24-07-18, 22:45
My bladder always feels full even after peeing, I've been getting frequency on and off too. When it doesn't feel full I can feel some kind of pressure inside (like when you hold a balloon tightly at both ends and the middle is pressured). I'm getting bladder/muscle pains when I move, laugh or stress out. It also flutters/twitches and throbs when I move alot. (I would say spasms but they don't hurt) and I usually get urethra stinging with it too. My vagina stings sometimes too and when I press on my vagina after I pee it feels full of fluid. I'm getting alot of clear discharge too since a month ago (all this started about 3 months ago) a lot of the times it seems to have red or black dots, no other colour so I think it's blood. My urethra feels weird after I pee too, like it's starts trying to squeeze as if there's more fluid (which I can feel but it won't come out).
My flow is very weak and last week the doctor said I traces of blood in my urine but no infection. I'm wondering if the traces were contamination from my vagina. Antibiotics hasn't helped once through all this. I'm so scared. When I search the symptoms it seems it could possibly be an obstruction but IC also comes up alot too which is my biggest fear! My symtpoms are so random, they come and go, some could be completely better while the other is worse. I've made a food diary but nothing seems to trigger it at all - my only hope that It's not IC. I would believe it's anxiety but the blood in urine scares me (I know it's stupid but I hope it was just contamination from my vagina since I have more fears about IC and bladder cancer than vagina stuff).
I've been to the doctors alot about this and they've referred me to a uro-gynocologist, I hope I'm not getting a camera up there because it seems very risky. While I'm waiting to see them, I don't know what to do with myself, this is ruining my life and I'm supposed to be happy - I'm getting married next month! :( Does anyone have simlair problems? I feel very alone in this.
Yes, I've had most of your symptoms but no blood, only pain and frequency. This had been on and off for many years then I had a bad flare. I suspected it was IC so my uro-gynocologist performed a cystoscope (under general anesthetic) and I was diagnosed that way and given treatment. It was not risky at all. That was in 2010 and I've only had a few niggles since then.
I do try to keep to the IC diet which definitely helps and drink lots of water 1.5 litres per day.
At the first sign of niggles I take anti inflammatories, which helps and put a hot water bottle over the area. My specialist also gave me some Vesicare for frequency but I hardly needed them as this hasn't been a problem lately.
I find that stress makes symptoms much worse.
Wow! You're getting married next month, how wonderful and congratulations to you both, have a wonderful celebration :) I'm getting engaged next March (it's second time around for me,but still exciting) :)
IC diet https://www.ichelp.org/wp-content/uploads/2015/07/food-list.pdf
Hi there
I had same symptoms. Constant bloating type of pain, some mild UTI symptoms, and a routine urine test discovered blood in my urine. The blood was microscopic (I can not see it), and persistent..meaning every test had that. No bacteria was found, so I did not have UTI.
So...I was sure its either bladder cancer or IC. I got all sorts of scans and bladder tests, including camera, into my bladder, kidney ultrasounds, pelvic ultrasounds...no cancer.
Then I asked my urologist if I can have IC...and he said No, but I didn't believe him, because the internet tells you this is very hard to diagnose, blah blah.
And then in several months, my physical symptoms went away. so my urologist was correct...its called urethral syndrome...some mild irritation of the bladder that goes away.
IC is SEVERE PAIN and peeing many times a day, and often even ulcers on the bladder. If the pain is truly unbearable, then you might worry. But there are other things out there...and by the way, 10% of all women have MICROSCOPIC BLOOD IN URINE.
As fro bladder cancer, the top oncologist in urology in Cedars Sinai told me that a women with microscopic blood in urine (very common finding!, and it snot contamination from vagina!) under age 50 who never smoke...has about 0% of risk for bladder cancer.
I hope that helps! I spent 4 months with crazy worry from bladder cancer to IC to ovarian cancer...and it was NOTHING!
PS. Cystoscopy is NOT a risky thing, it takes 30 seconds, and it is not a big deal at all
---------- Post added at 19:35 ---------- Previous post was at 19:10 ----------
How did you develop the Hematuria Risk Index (HRI)?
Dr. Loo: The HRI is a simple translation of the multivariable model developed for common factors we evaluated in patients who were referred to urology and underwent full evaluation for AMH.
The two factors with the highest odds ratios (age 50 or older and history of gross hematuria) were assigned four points each, and the remaining three factors (male gender, smoking history, and degree of microhematuria [more than 25 RBCs/HPF]) were each assigned one point.
We used two independent groups of patients from different urologists and geographic regions to test the model. Natural breaks in the scores were identified, which broke the cohort into three risk groups: low risk (0–0.3%), moderate risk (1.1–2.5%), and high risk (10.71–1.6%).
Have you made any adjustments to the HRI since the February 2013 publication of your study?
Dr. Loo: The Hematuria Risk Index serves an illustrative purpose in depicting relative risk of common clinical parameters in patients with AMH. It needs to be validated further and likely may be further refined. Our data collection is ongoing and we hope to report additional findings in the coming year.
We [at Kaiser Permanente] have, however, revised our own clinical recommendations to reduce radiation exposure to our low-risk patients with AMH. And patients with almost no risk of any urinary malignancy (asymptomatic nonsmoking women younger than age 50) are spared workup altogether. For any other patient with AMH who is age 35 or older, we recommend cytoscopy and renal ultrasound. Patients with gross hematuria are recommended cytoscopy and CT scan.
Head of Urology Kaiser Permanente California
Initially I didn’t have alot of symptoms until i googled about it and freaked out reading all the horror stories I don’t have much pain just some discomfort in urethra and soreness down there
How long it took for you symptoms to vanish , anything specific helped?
WiseMonkey
26-07-18, 11:23
Try drinking lots of water and keep away from acidic drinks (coffee, tea and orange juice), acidic fruit and alcohol. This usually helps.
It took several months really (4-5!). But when your panic subsides, the symptoms become kind of on the background. If I strongly concentrate today, I can feel some of this again. So half is a mind game. Half is mild irritation.
I promise if you have REAL IC, you would not be able to function whatsoever. I could potentially have some super mild IC I suppose, but it is so mild that I don't feel it at all most of the days?!!? Who knows...but it is not what you have been Reading online. I am perfectly fine...despite having some microscopic blood in urine, some white cells, and some pseudo-symptoms that don't cause me disturbance unless I read and concentrate on them.
My uro said this is common in females, some muscles spasm inside the bladder, and cause these symptoms, and it takes months to get better.
Agree on avoid acid, and coffee, etc.
I agree on the part of mind game I suppose if i didn’t hoogle i would be able to chuck it out in days but i have scared my mind so much reading stories on ic website that every twinge i get i freak out and compare with the stories of people on that forum about how it got worse i guess iam stuck in fear symptoms cycle But stories like yours give me so much hope.
Thank you ��
Julieta thank you thank you thank you!!! You have no idea how much reassured I feel now I actually feel like crying haha! I have to wait until October for a UBGYN consultation so it feels really good to feel like 90% less anxious now until then! I suspected urethral syndrome too but I couldn't find much info about it, it's so good to hear it goes away! I'm sure it will for me because I don't do anything irritation-wise anymore like soaps, alcohol, caffeine, sugar etc. I'm so glad you're ok in the end by the way! I totally know what you mean about the pseudo symptoms, I've suffered with psychsomatic versions of different conditions since I was quite young. I actually made a Facebook support group for it on Facebook I'm hoping for it to be a community of people who can give advice and reassurence. :) (its called Pysychosomatic support for anyone whos interested!) The nurses from my NHS GP surgery are going to try and get it going with more support soon so hopefully there'll be alot of members! I'd really love for your success story to be on there because it's also for people who have real conditions so others can see it's not always as bad as Google will say lol. :) Let me know if that's ok first of cause! :)
Thank you everyone who commented, I love this site. <3 Hope you all get some reassurence and relief and have a good day today. :)
---------- Post added at 08:12 ---------- Previous post was at 08:00 ----------
Wisemonkey thanks so much for commenting and the link! :) Sorry to hear you have it but I'm really glad you've managed to get it under control now and I hope you're managing your stress well. :) And ah thank you! Congratulations to you both too, it is so exciting! I hope you have a really nice engagement! <3
Powered by vBulletin® Version 4.2.5 Copyright © 2024 vBulletin Solutions Inc. All rights reserved.