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Interstitial Cystitis -- Surgery? Will pain reduction follow?
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LandOLakes posted:
I am attaching photos of the inside of the bladder. The "cyst" looking things are apparently the enlarged veins. You can see the enlarged veins in the second photo, which was taken from the top of the bladder looking down. (HELP -- I can't figure out how to upload the photo -- the site doesn't pop up a "browse" window for me to locate the photo inside my computer).

I have been in pain from Intersistial Cystitis for probably 20+ years. My new urologist who took the photos said she recommends I have the main vein that is feeding the others cauterized, which will "take care" of all of the ones that are enlarged and connected. But due to the proximity of the enlarged veins to the opening of where the bladder drains, scar tissue from the surgery could create a problem at that opening, a place the surgeon said is very sensitive. She also said there was no correlation that carterizing the vein would reduce nor eliminate the pain I have been in all this time -- that maybe I would be helped by it, or maybe not at all. I am at a loss to know what is the right thing to do regarding the recommended surgery. I do not want to end up with more problems than I started with. Also, I am aware there are some medications people may try for Interstitial Cystitis, but after reading about their success rates, length of treatment required for a "trial" period, and the side effects, I am not inclined to try any. Please, if you are a physician and can understand what you are seeing in the photos, tell me what good choices exist for me.
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Jane Harrison Hohner, RN, RNP responded:
Dear LandOLakes: MULTIPLE literature searches at the National Library of Medicine site did not yield any studies on the use of embolization (stopping blood flow in a vessel by creating an obstruction) with respect to bladder pain. There are many studies on the use of embolization for prostate problems, placenta accreta in pregnancy, bladder hemorrhage, even chronic hematuria in select patients.

One citation did note pain with urination (dysuria) in their study:

Angiol Sosud Khir. 2007;13(3):79-84.
[A differentiated approach to management of small-pelvis varicosis in women>.
[Article in Russian>
Ne 12Dmark AI, Karpenko AA, Shelkovnikova NV, Taranina TS.
Abstract

In our clinic, we examined and treated a total of 32 women presenting with small-pelvis varicosis (SPV) and suffering from chronic pelvic pain appearing after prolonged static loads and physical activity, dysuric impairments, dyspareunia, and painful hypermenorrhoea. A Doppler ultrasonographic study and phlebography revealed SPV in them too. Appropriate treatment was carried out in a differentiated manner depending upon the stage of the disease and degree of clinical manifestations. Eighteen women with stage 1-2a SPV underwent comprehensive conservative treatment including venotropic preparations, microcirculation-improving agents, drugs influencing systemic enzymopathy, and physiotherapy. The remaining 14 women with stage 2b-3 SPV were subjected to roentgenovascular occlusion of the ovarian veins by means of sclerosing agents and Guianturco-type metal spirals. At 2-3 months after conservative and surgical treatment. 23 patients (72%) reported disappearance of pelvic pain; five women (16 %) were found to have their pain subdued; in four subjects (12.5%) pain did not disappear. During a 4-year period after treatment, 27 women (84%) had reportedly no dysuric events, five women (16%) at 2-2.5 years after treatment appeared to have developed exacerbations of chronic cystitis, two patients (6%) turned out to have periodically (2-3 times a year) been experiencing frequent painful urination. Besides, we carried out a morphological examination of the urinary-bladder walls on the post-mortem materials from 15 (unrelated) cases of accidental death, having revealed varisosis of the small pelvis. The findings obtained therein also strongly suggested that lingering impairment of the venous outflow from the small pelvis had led to development of a chronic inflammatory process in the urinary-bladder wall.

LanOLakes, as you can note this was a small study (32 women) done in Russia. Thus I would urge you to ask your important question of your urologist. You could even seek a second opinion from another urologist; this is a question that mandates more expertise and clinical judgement than I can provide.

I'm really sorry that you have had this dreadful pain for 20 years. Interstitial cystitis (IC) is an evil disorder, still without many effective treatment options.

In Support,
Jane


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