Interstitial cystitis

[MidgetSammi]

Hello my lovelies,

Looking for some advice on if interstitial cystitis can be missed on a rigid cystoctopy? Here's the short version of my story:

Been dealing with basically recurring UTI's but no infection found for the last 6 years. It's every symptom of a UTI + bloating & there's always blood in my urine. Went for a rigid cystoctopy 5 years ago nothing was found they were looking for bladder cancer never mentioned interstitial cystitis. After that I was discharged back to the gp who put me on antibiotics for 6 months that did nothing. The pain after the cystoctopy was horrendous so would rather avoid having to go through that again. Anyway I gave up with my GP & just put up with the pain that would show up at least once a week. We moved in December & in February the pain was so bad I got signed off work & referred to gyne. They did a laparoscopy on Monday everything was normal & again I'm discharged to the gp.

I am convinced the urinary symptoms are interstitial cystitis but would they have not found that on the cystoctopy? I've got a gp appointment tomorrow to remove a coil the surgeon put in without my consent on Monday so I'm going to talk to the doctor & see what she thinks. I also think I have IBS which is where the bloating symptoms are coming from & painful bowels. But the constant burning urine & bladder pain & constant need to urinate can't just be coming from nowhere??

Thank you in advance I'm really at my wits end with all of this! I'm 25 and want to be back at work so me & my husband can save for a house but that is proving impossible atm!

[AngieMo]

Yes IC can definitely not show up on cystoscopy. Unless there are hunners lesions present IC can be invisible. Actually more times than not IC is diagnosed based on symptoms alone.

[MidgetSammi in reply to AngieMo]

Thank you! I just went to the doctor & she agreed it is interstitial cystitis. She said we could go to urology to get an official diagnosis but there's not much point. So she's given me pregabalin to try fingers crossed!!

[Nessie50]

I feel for you, I ve had this since my twenties but not so regular as yourself.Pregabalin workss for me but I only take it when I flare , which is usually 4 times a year. All the antibiotics never prevented this, never had a bad urine sample , very confusing isn’t it. Water d mannose is also a good product , had it in capsule form and seemed to help space the flare ups . I hope it settles for you. Do not take cranberry products!

[spzgirl51]

Hello MidgetSammi ,

Have you found the icdiet.com website ? It has very helpful suggestion for calming interstitial cystitis type symptoms: e.g bladder pain, urgency and frequency issues. Blueberries in any form really helped me.

Best wishes xx

[MidgetSammi in reply to spzgirl51]

Hi,

Yes thank you! I've cut out gluten because that's a big trigger & I'm now cutting down on sugar. Having a flare up today after eating loads of sugar at the cinema yesterday haha stupid!! I'm now taking 150mg diclofenac a day, 150mg of pregabalin a day & omeprazol. Awful lot of drugs but it seems to be keeping it under control. Fingers crossed!

[kay_alderton]

Yes, I have IC and the way that it was diagnosed was a lack of any other diagnosis. What I would say is challenge your consultants and doctors. Mine made me feel like I was making it up (I was diagnosed at age 28 and they said I was far too young for it to be that.) Also I started having QE2 installations a few years ago and it's changed my life. To begin with I thought "What on earth have I done?" because it got worse. However, after this things improved to the point of not really having to restrict my diet any longer and having a treatment every 3 months. Good luck.

[Catness]

Hello,

I’m sorry to hear how much you’re suffering, as a fellow IC patient I thought I would pass on a couple of tips:

If the option is available to you I would pay to go and see a particular specialist at 10 Harley Street privately, I will message you their name because I don’t think we can say consultants names on here. He has 37 years or treating chronic UTI and is his belief that IC is always caused by a bacterial infection. When you go and see him he tests a very fresh urine sample (you have to do it there and then) under a microscope to look for bacteria and pus cells. This is because the NHS dipstick method is 50% inaccurate and often doesn’t pick up on anything. It is also this doctors belief that women are suffering needlessly from invasive procedures such as cystoscopies when they should of had their urine properly examined. I saw him myself last week (actually his son but he came into the consultation too) and it was very illuminating.

I have also found the books by Catherine M Simone to be a great source of information and strength especially ‘Along the Healing Path’. She is an IC patient who healed herself through natural means but even if you go down the conventional medicine route you may still find tips that are helpful to you.

Finally I would do some research on Marshmallow root. You can buy it from herbal shops and make it into a tea and it’s very soothing for the urinary tract. If you went on amazon and searched ‘Nature’s way marshmallow root capsules’ and had a look at the reviews you will see it’s mostly IC sufferers and they seem to really help

Anyway I hope that’s been of some use. Take great care of yourself xxx

[smg60]

The top triggers are caffiene (this was the worst one for me - 2 days of headaches but I gave it up), spicy foods (which I love), carbonated beverages, citrus fruits, fruit juices. alcohol, tomatoes, horseradish, vinegar, pineapple/pineapple juice and certain artificial sweeteners (aspartame being the worst) - sucralose doesn't bother me. I've been to a specialized urogynocology clinic and have tried every med out there (not opiates). Gabapentin is the one I can tolerate but I was still having pain so along with it, tried Elmiron (made my hair fall out), Nortriptyline (gave me heart palpitations), Lyrica (screwed with my memory). I am up to 2000 mg/day of Gapabentin - will see how it goes - have another appointment at the end of the month. I differ though from many diagnosed with IC in that I don't have frequent urination - just extreme pain while and after urinating. It really helps if I hold my pee until I REALLY have to go. The pain is in my vagina and I would compare it to someone shoving a baseball bat with splinters up there! I have had surgery for bladder prolapse (the pain stopped for a while and I thought that was the end of it) and now my specialist says I have a rectal prolapse, so I'm sure that's not helping. It's so depressing to live with pain. I know I have it much better than others, but I wish there was a medication I could take that would just stop it! I suffered from constant UTI's in my 30's, 40's and 50's (and I mean approx 6 per year) and I truly believe it was all the antibiotics I took that contributed to my problems now. I finally discovered a supplement at the health food store - Cranberry tablets with D-Mannose. It completely cured me of UTI's - haven't had one for many, many years (I'm 59). I was also diagnosed with IBS in my early 50's but another supplement I found cured that (50 Billion Culture probiotic - one you keep in the fridge). So hang in there - you are not alone.