Pelvic Pain Support Network
9,643 members3,064 posts

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

9 Replies
oldestnewest

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.

Reply

Absolutely, I csn not wait to speak to u.

Reply

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 :(((

2 likes
Reply

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

Reply

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..

Reply

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

Reply

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?

1 like
Reply

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

Reply

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.

1 like
Reply

You may also like...