Pelvic Pain Support Network
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Ic, bladder removal and pudendal neuralgia

Hi All, I have had severe i.c. for 3 years. My doctor wants to remove my bladder. We can not get the pain under control and i am on a high dose of pain meds. I am ready because my pain is level ten 23 hrs per day. I feel best when I wake. I had a pelvic pain specialist who thought the pudendal nerve was involved. I am 49 yes old and had a full hysterectomy. My question is, HOW DO I TELL IF ITS THE BLADDER OR THE PUDENDAL NERVE?

SYMPTOMS:

BURNING/STINGING IN LEFT MID AND LOW BACK

ELECTRICAL/ELECTROCUTION TYPE PAIN IN LEFT FLANK THAT RUNS FROM UNDER RIB DOWN URETERS TO BLADDER

EXTREME PRESSURE LIKE I AM GIVING BIRTH IN VAGINA AND RECTUM AND PERINIUM

THROBBING INSIDE VAGINA

Please, any advice is welcome. I have had the microgen pcr test and have no infection. Thank u all for reading

10 Replies
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Is this you Misti? I’m calling you tomorrow. So sorry I haven’t been there. I was going to post something this am that probably would have upset you very much. I’m not at a good place right now. Sounds like we can maybe help each other out. Please except my phone call when I call ok. I’m sorry. Deb.

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Absolutely, I csn not wait to speak to u.

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OMG thats horrendous.. so sorry you are going through this nightmare. Removing bladder is very drastic, I imagine you had all possible tests done for PN etc? Did you have a positive block for PN? Did you try all the possible medication? I really hope you can have this controlled with something else, not bladder removal! So sorry :(((

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Jen, can u tell me what tests I need and what meds I should try? I'm going to Seattle in a month for bladder removal, so plz reply quickly, as possible. Thank u

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I would just get another opinion if I were you, before proceeding with removal.. in US you have many drs specialising in PN, dr Conway and dr Hibner are one of the best, I would see one of them before going ahead..

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No, i have had none of those. Can u plz give me a run down of those?

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You can have medication for your pain and blocks. Meds are gabapentin, pregabalin, amytriptyline, cymbalta, xanex.. pAin management specialist can help you. Also nerve blocks or ganglion impar block?

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I have tried all those meds except pregablin. Have had many nerve blockd but they focused on my back, as what was causing the problem, as I am an amputee. When I stated that I had back pain amongst my symptoms they thought it was the gait being imbalanced

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Before having your bladder removed take a look at Dellon.com. He is a peripheral nerve specialist in the states. Look under pain as he has written a free download book. Might help. Hope it does.

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I am in the same situation. I will not let anyone take my bladder. EVER. Everything I have read does not state that you will have any less pain if it is removed. I had a hysterectomy and rectal prolapse surgery in 2014. It was supposed to help my pain. It made it much much worse. Everything is too tight now. I found something that helps me and it's the only thing, other than my high dosage of pain meds, is bowel control. I have trained my body to have a bowel movement every morning. It may take an hour or two or 10 minutes. Whatever it takes I give my body the time to do so. When bowel passes by my bladder I fall to my knees in pain. I can not let anything sit in my colon, near my bladder, or I can not control my pain with anything. To sleep I use 10mg Diazepam w/ lidocaine vaginal suppositories. I only use these in emergencies but without them, it's no sleep and no reset. Do not lift anything over 5lbs. It will trigger a flare. Only water of course. But you sound like me, a flare is a state you live in. I feel terrible for you. This is a terrible disease and not understood well, at all, by anyone. I would say the pain is akin to having childbirth and a kidney stone at the same time. My pelvic area feels like a bowling ball is inside it, with knives sticking outside of it. My vagina feels like a hot curling iron is laying on it and inside my rectum. Some days I have to take a few days and do nothing at all but lay on my side, with my heating pad..sitz HOT baths... is the only movement I will allow and my pain can be controlled with pain medication after whatever is going on inside of me decides to calm down. Likely spasms and inflammation that has spread all the way up my body. I don't want any other surgeon ever taking anything else out of my body. I went from being like this two weeks out of the month to every day in so much pain I'm homebound.

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