Undiagnosed painful bladder with neur... - Pelvic Pain Suppo...

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Undiagnosed painful bladder with neuropathic extensions in legs and up to head.

j450nh profile image

Please help. My partner was admitted to hospital 9 days ago with an extremely painful bladder/urination problem accompanied by unquenchable thirst. A sudden and desperate need to urinate without actually urinating anything much at all, and then having to constantly retry. It also seems to have a neuropathic connection to her legs and through her back and up to her head. Pains intensify and travel up and down her body when she tries the toilet. She ends up in agonizing pain with almost complete loss of mobility through exhaustion and weakness from the episode.

She has been prescribed amitryptyline nightly and is in a hospital ward but the episodes seem to be getting worse.

She needs to go to the toilet- she physically struggles to get to the bathroom and tries to urinate. When its very bad the nurses have to carry her. Pain spreads to her legs and back and up to her head. She then feels her face and speech become affected by the sensation. Almost like a fit. Shaking and in terrible pain. Then nothing but a dribble of urine after all this exertion.

She has no infection, scans all come back with no visible sign of a problem. Pelvic ultrasound and xray and ct brain. They told her she was medically fit to go home. We had to battle to keep her in hospital because these episodes are horrific for her.

This all happened suddenly last wednesday/thursday when i took her to a&e. Nothing seemed to trigger it and we have no idea whats happening to her.

She is confused and scared. When the episodes die down and her body calms, she comes back to herself a bit. Then she can recognise the signs when it starts up again with the need to urinate feeling and pressure. Then she has to start this process again. Sometimes less severe, but sometimes very severe. It has been referred to neurology for next week sometime.

The thirst hasnt gone away and she uses a dry mouth spray as they put her on fluid restrictions. She oversaturated her sodium levels initially with the thirst.

Please help with some knowledge or recognition or advice because she is so lost in all of this. She was ok 10 days ago.

Thank you,


10 Replies

hi just read your measage is your partner asked the hosipail if she could have very low vitiman d3 or b12 . iknow it can do things like that i wad leavel 15 very low vitiam d3 in 2012 and some of the symtoms you said sounds simler to what i had . but may not be but id ask doctors and see ask them to test her .

j450nh profile image
j450nh in reply to Mrshappyme

Hi, Thanks for reply. Shes been given folic acid supplement to take but that's all. They have been taking continuous blood tests. Your symptoms were the same?

Mrshappyme profile image
Mrshappyme in reply to j450nh

all but the thirst . i hope she soon gets well as i know what i was like keep fingers crossed for her

i’m so sorry to hear of your partner’s trouble. While I have not had the same issues, I did have some other issues that none of the 8 doctors and specialists I saw could figure out and treat. All my tests came back clear, including blood work and scans. I went to a pelvic therapy specialist and she identified my problem and did pelvic therapy every week, which really helped. You may want to have her see one in your area. You can google pelvic therapy/ therapist in your area. Best of luck to her!

j450nh profile image
j450nh in reply to Luckee

Thank you

Jason I'm so sorry your wife is going through this my prayers go out to the both of you and I hope you find the cause of this. I know this has got to be so scary and frustrating as well. Have they checked her blood sugar? Diabetes is a sign of dry mouth excessive thirst. All kinds of problems can come from having high blood sugar or even low sugar. As one lady said have her vitamin d-3 and B-12 also magnesium checked please get her potassium check also very important. Low potassium can cause some of these symptoms. Low potassium is very dangerous. It causes Hypokalemia muscle weaknesses cramps etc some of these symptoms are familiar to your wife's symptoms. She may may have several deficiencies. Low potassium can cause dry mouth but and muscle weaknesses the B magnesium deficiencies can cause the water retention. I don't understand why our doctors don't include mineral and vitamin check in our blood work when we go to our yearly physicals. I had to more less diagnose myself for D-3 , B-6, B-12 and Potassium. Then the doctor did the blood work and now I'm on prescription strength potassium and I use a Methylcobalamin 5000 mcg, Quick Dissolve sublingual no shot B-12 Pure Encapsulations B-Complex Plus both of these if she is deficient can be bought off of Amazon the Potassium is a prescription Klor-con there's a 10 mg and a 20 I'm on a 20. If she's on a diuretic for weight loss make her stop. If it's described by her doctor then mention to him about maybe this problem she's having is a potassium deficiency. Now none of this stuff maybe related to your wife's problem but just throwing it out there. I was deficient in these minerals and vitamins but I also have advanced peripheral neuropathy now. If my doctor would had checked my vitamin and mineral in my blood work I may not have all my problems that I have now. Any thing that pops in your head write it down tell the doctor to test her it sure doesn't hurt. If one doctor is giving you the answer find a second opinion keep trying till you get the answers and help your wife desperately needs. I pray you find what the reason for her illness is.

I'm sorry for your horrible health problem. Has your wife taken a Covid vaccine lately? There are thousands of weird health conditions because of vaccine side effects lately, but the media is not letting people know of them. One common problem is all kinds of unknown neurological symptoms doctors don't understand.

If it's not about vaccination lately, I also think it would be best to see a pelvic floor physio therapy specialised PT. It's very common that people need to spend months going to one doctor to another and not getting answers not to talk about real alleviation.

Very extreme symptoms. It must be agony to watch. Did you know that the bladder tissue has a lot of ACE2 receptors? And that many hospital patients are having these kinds of symptoms as cytokines get passed out of the body through the kidney and bladder? It is almost its own symptom of "you know what." I would think that all the underground remedies for that might also be tried.

(Also - that pain that goes from bladder up the body - is a symptom in the Chinese Medicine literature because of central meridians connecting bladder to heart. Important symptom is whether she has this extreme thirst with a disinclination to drink. That suggests damp heat in the body which points to infection.

Good luck. I hope she gets relief soon. <3

dear SusiReadsALot. do you know more of Chinese or Oriental Medicine?

I have a wonderful PFPT who has helped to reduce my pelvic pain somewhat. she also understands a little of the nerve routes or meridians and she has also treated my neck and jaw and feet. My jaw is tight and we believe that the jaw tightness is pressing the vagus nerve. This is all we understand so if you are able to tell me more I would much appreciate it. I can then try to find more information of how to treat the meridians that connect jaw, pelvis, legs and feet. I belong to the minority who doesn't benefit of acupuncture (I have tried many times with very little success).

hello i read your measage 8 days ago and i couldent help but wounder how your wife how id your wife now ? i hope shes a lot better my heart gos out to her

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