Ic, bladder removal and pudendal neur... - Pelvic Pain Suppo...

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Ic, bladder removal and pudendal neuralgia

STUBBORNGIRL7368 profile image

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?






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

13 Replies

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.

Absolutely, I csn not wait to speak to u.

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 :(((

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

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..

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

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?

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

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.

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.


You are living my same life. Omg. I’m exactly like you now. I was a little better before my last procedure on December 4 of this past year. I actually did notice when I have regular bowl movements my pain is more comfortable and my urine comes out easier and I don’t retain more of it making it difficult to void. So I’ve just started stool softeners and my magnesium citrate again to not get constipated because I have a rectal fissure that opens up when I’m constipated. I know the life you live. I’m living it now. The only difference is I’m gonna keep trying things until I get to something that works . My next step is a nutritionist. Thanks for posting that. God bless. And prayers for painfree days ahead. Deb.

I think we need to watch our inflammation levels. I also think we need to be very proactive when it comes to our health. This IC doesn't get the respect it deserves. Inflammation can wreak havoc on a body and docs just seem to ignore that. Every uranalysis I have comes back with occult blood, trace. It looks like water when I pee and it has blood in it. ummmm.. ok, that seems a little drastic. What a mess. I take magnesium a few times a week because I've been on a PPI for 7 years. Now I just had my 6 month check up with my primary and I have to go off of them because they can kill ya. Seriously? So I often wonder if the blood is coming from my kidneys because I have swelling in my hands and feet and times and just so tired. I think the inflammation in our system, over time, wreaks havoc on our bodies. If we had RA they would be checking us constantly for heart, kidney issues. making sure we didn't die of some preventable issue from inflammation. Do you know of anyone trying any meds or offering any meds like a biologic for IC? I think it should be considered. When I can get my primary too I have her check my SED rate. always high, always. smh. I don't see a nutritionist. I know that sugar spicy anything that can't go into an open wound doesn't go into my mouth helps. I try to spend my $ on labs to track how my body is handling this whole thing. God bless you too sister!! Sisters in IC!! -Erika

ps, my vit d stays low, iron, B12 so getting a good low acidic vitamin is a must for us. Think of ways to lower inflammation and use those methods. which is whacky because vit C is best for that but will cause pain for us. UGH, the journey through the unknown while everyone sorda looks at ya like ya crazy. Our Normal. It would be funny cept it isn't..lol.

I totally agree with you 100 %. I get my AnA checked all the time because autoimmune runs in my family big time and I have all those symptoms and I haven’t been diagnosed with one yet. I hear you about the swelling in the hands and the feet and when I bring it up to my doctors they act like they have no clue to what I’m asking them. I’m really am tired of all the procedures I’m doing and to tell you the truth they aren’t really helping and financially it’s killing me too. I have to ask you something do you ever get excruciating stomach and back pain at the same time that it literally makes you throw up. I’m just curious if that has ever happened to you. My urogynecologist told me it was because yes I was dumb to do this but I drank orange juice and it caused an immediate flare. And talking about the crazy comment. Yes, even my other doctors that have nothing to do with IC or PN look at me like I’m crazy but it’s really bad when your own family looks at you like

that. I think my own sister doesn’t believe I’m sick at all. I think she believes I have Vulvodynia. She doesn’t even comprehend that it’s a generalized term for pain in the vagina. Lol. It makes me laugh. To be honest with you. I will have to get my sed rate and RA factor checked. It’s been a few years since I’ve had that done but my vitamin B12 and D are always diminished like you and I take them everyday. Funny right. So I agree with you something has got to give. Keep in touch. I go for the bladder installation on March 18. Hang touch. Deb.

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