JUST diagnosed, have a question about op report

[Breezy1218]

I had a chance to see my op report from my cysto/distention on Friday. My bladder appeared normal prior to the distention, afterwards showed "multiple areas of petechaie and a few small areas of hemorrhage, consistent with interstitial cystitis." Is it normal to have a "normal" appearing bladder before the distention? Is the degree of hemorrhage, etc, indicitive of the amount of pain you have? I also have endometriosis, and I know that the extent of growth has no correlation with symptoms; I didn't know if the same went for IC.

Just as a little background: I have been diagnosed with endometriosis for 8 years (but know that I've had it since my first period!). My pelvic pain, over the last few months, has progressed from coinciding with periods to being daily. I don't have as many of the "urinary" symptoms as I do just chronic severe pelvic pain (although I have had many negative UA's over the last few years, despite symptoms). I am up to taking extra strength Percocet, two at a time, and sometimes they don't do much to help. I've run the gamut on anti inflammatory medications, pretty much. I am seeing a pain specialist this afternoon and hopefully he can help me with long term pain management.

I am so glad I have found this site!

[Big Red]

I don;t have an answer for you. I know that endometrosis can be painful depending on how bad it is. The doc. or is nurse is the best to talk to. I hope you feel better.

[Sarojini]

Yes, most IC bladders appear normal before distention. It is only after the distention has been done that the petechiae, glomerulations, and other signs of IC become apparent. Occasionally, a very severe case can be seen before distention, but most ICers report normal bladders prior to the hydro.

[ICKIRSTI]

yes indeed

I have quite a normal looking bladder before hydro. Though I am in pain, and have to pee every 250 cc's, my urinalysis is usually always quite good and apparantly even healthy and normal. When I was diagnosed the doc told my mom everything looked great. But that I do have I.C. and that my frequent urges to pee should never be ignored.

[ICLori]

Hi, Breezy, welcome! Yup, it's totally normal for an IC bladder to look normal until it gets distended! That's why in-office cystoscopies without any anesthesia are of limited value for IC patients. They don't really help diagnose IC.

I know the pain can be so hard to put up with - but please hang in there a little while longer. You've already gone through the worst of it - the time before diagnosis, before starting on a pain management program. So pretty soon you should be feeling much better, maybe even back to normal completely, once they find the best medicine(s) for you!

I think the vast majority of IC'ers feel good the vast majority of the time. It's normal to have flares here and there, but there are so many meds out there to treat IC, most people can find their "miracle" and be comfortable.

For me, Ultram seems to work best to control my pain. For some reason, Percocet irritated the heck out of my bladder. Not sure why. I could take Percocet here and there - I'd get some irritation after the narcotic wore off, but nothing too awful. But when I used Percocet 24/7 - ugh! I eventually was in more pain on it than off.

Although...I recently read about hyperanalgesia, that happens sometimes especially in patients with impaired kidney function (my kidneys have been iffy for a long time now and are iffier than ever lately)...I guess what happens is, the narcotic can build up in your system and when it reaches a certain point, in some people, it has the opposite effect - instead of calming the nerves down, it actually hyperarouses them so you feel MORE pain! I think that might have been what happened to me after a couple of weeks on Percocet.

If you think that might be happening to you, maybe you could ask your doctor if lowering your dose might work - it sounds counterintuitive, but I guess this hyperanalgesia thing really isn't all that rare. I had never heard of it before! It kind of blew my mind when I read about it.

I hope so much the pain management doctors will help you. You deserve to be comfortable! I'm sure it won't be long before you are feeling like your old self again!

Are there any IC type meds that you've tried, that seem helpful so far?

Blessings, and welcome,
Lori

[Breezy1218]

Thanks for your replies and the welcome!

I have not yet tried any IC-specific meds, seeing that it is so new...the possibility was only mentioned the week before! (although I had wondered about it doing my own research) I was in the ER two nights in a row with severe pelvic pain and of course, they were unable to find a cause there. I saw a partner of my GYN later that week that referred me to the urologist. I am grateful for the referral, although my doc's partners have always been VERY difficult with the pain management aspect. I will discuss Elmiron (hope I got that right without looking, lol) when I follow up later this week.

The pain doctor started me on Neurontin and Zanaflex, and will get me set up with a TENS unit in 2 weeks. He also mentioned and gave me info on an internal stimulator, but without knowing a whole lot yet, I am thinking I do not want to go that route. We shall see! I am glad to see a light at the end of the tunnel but I felt like a criminal in that office, when the doc talked about signing contracts, not getting meds from any other doctors, routine urine drug screens, not "sharing" or "losing" your meds (I of course think, well DUH but I guess they see that quite a bit). Just a totally different world than I am used to!