New diagnosis of Interstitial Cystitis-IC

On May 25th I had surgery for Hysterectomy and Rectocele, uterine prolapse with Bladder Sling, cystoscopy and hydrodistention. I had no idea that they would diagnose IC. I thought all my issues were related to my prolapsed uterus. Just what I needed another chronic illness. I also have asthma, chronic sinusitis, and diverticulosis. I was pretty upset. I have been reading about the diet that I should follow and was wondering if anyone out there has had to deal with IC and if they were ever tested for Celiac disease as well? Just curious if it would be a good idea to be tested or just go gluten free and see for myself. Would love to know if any IC'ers are out there and could give me some needed advise on how to manage and control this new diagnosis?

On the upside...my surgery went well and I'm recovering nicely. I started back to work today and feel pretty good other than the swelly belly.

Thanks for all the hugs and support.

Hi I am 5 wks post op and I think I have IC too. I hope mine is temporary from the surgery but I don't know. I need some help also and wanted to bump up your post so maybe someone can offer advice. thanks

Thanks for responding. Did you have a cystoscopy done at the time of your surgery? They gave me a picture of my bladder and showed me where all the inflammation was. It was streaked with red on most of the bladder wall.

I thought once you have IC that it's forever but can be controlled through diet and medication if needed. Not sure though. I was hoping more people would respond but maybe we should look on the IC forums instead. I am looking at the diet they have on the IC-Network website and it looks like there is alot of acidic foods that need to be eliminated.

Good luck with your recovery..I'm about 4 weeks out and feel pretty good. Just get tired easy.

Thanks again for your post

I haven't been diagnosed yet but I googled around a lot and the symptoms are similar to what I am experiencing. I was completely normal prior to surgery. Then at week 2 I start to feel all the symptoms of a UTI including I am leaking urine a bit. I have been test for UTI three times yet no infections. I have found miserable to live with. My gyno says its because they handle the bladder during surgery and it's gone into spasms. So I don't know I just want it to go away. I am on Gelnique but it's sticky and flakes off so I have asked to try ditropan instead. The meds help but not completely I still have the feeling to having to go all the time but I can sometimes last a hour.....instead of every 10-15 mins. How is your bladder doing? Are you on meds?

So far my bladder is doing ok. I have been eliminating alot of foods, such as coffee, Tea, and most of the acidic fruits and veggies. I bought Prelief to take before eating anything acidic, but haven't used it yet. I'm on Dulera for Asthma, Flonase for Sinuses and Ibuprofen for pain. My problem is frequency and pelvic pain, but not severe. I'm going to my post op in July and might be tested for Celiac Disease as well so I may be starting to go Gluten-free. I haven't really needed any heavy pain meds other than Ibuprofen so far. I hope your symptoms get better soon for you. I would ask your doc if he can test you for either IC or Celiac to see if your symptoms get better.
Good Luck with everything and if you can let me know how your doing and if it's getting better for you.

My 6wks is next week and I am definitely going to ask about IC and some further testing. I just hope the testing doesn't make my bladder worse as it must be sensitive. I have bought some prelief already and eliminated a lot of food....all the stuff I love unfortunately. I did it just in case it helps as I am desperate for this to get better. I am not sure about the gluten free stuff. Have you checked out the website ic network.com? It seems to have lots of good info. They even have an IPhone app about the IC diet, and it's only $1. Take care

I have been struggling with bladder infections, spasms and pain since my TAH on 11/30/11. I have been on Vesicare since Feb. It had been working mostly until recently. Now pain, bloated feeling, frequent urge with little result. I have had enough and will call doc to request a uroligist on Monday. What tests are done to determine IC?

I first went through urodynamics testing before I had my hysterectomy and prolapse with bladder sling surgery. During the surgery they did a cystoscopy with hydrodistension. That is how I got the confirmation that it was truly IC. Did they ever say that your bladder lining was thin or you have a very small bladder? That's what they told me before surgery, so I think they suspected that I had IC.

Good luck with everything. I hope they find out what is causing all your pain. I felt very bloated and heavy down in that area before surgery. I've been on the IC diet and feel somewhat better and now just waiting for my Celiac test to come back. It somtimes goes hand in hand with IC.

I was border line celiacs for a few years before my hysterectomy. Its been almost a year and ive been able to tolerate regular food. If your having problems with certain foods ask your doctor about a colonoscopy. About the IC, i was diagnosed at 18. I get 3-5 bladder installations every few months as needed and watch what i eat. My doctor also put an implant in my back wired to my spine to help with the frequency and spasms.

This may be a stupid question, but what do instillations do and why so often?