pain when urinating plus extreme genital and vaginal pain

[Silvermouse]

Iwonder if those of you who’ve been diagnosed with Pudendal Nerve problems could advise me?

I’ve suffered with painful urination, weak stream along with very painful genital and vaginal pain. I mentioned a pudendal nerve problem to my female GP and just got raised eyebrows! She did send me for ultrasound and transvaginal scans but nothing showed up.

Could pudendal nerve damage cause my painful urinary problems or do I need to look at something else? Interstitial cystitis doesn’t seem to have genital and vaginal pain associated with it.

[Deniseshaw56]

Denise56 hi I have got penderal neropathy and I have burning in my vangina and retum as if you won’t have wee after you have been I feel your pain it’s evil

[Silvermouse]

I’ve found this online. It’s a bit techy as it’s a medical article for professionals but it has some really interesting information about pelvic trigger points. Of course the challenge is to find someone within a reasonable travelling distance who would be knowledgeable about this. Will let you know if I find anyone - I’m in the UK.

ncbi.nlm.nih.gov/pmc/articl...

[Deniseshaw56 in reply to Silvermouse]

Denise56 do you mind me asking how your pain started is your pain 24 7 with. No let up Mine starts soon has I am up in morning first wee and bowel movement starts it of then it goes to burning in bowel and vangina and bladder slowly gets worsts though day really chronic late at night sometimes changes to bladder fullness and vagina cramps

[Deniseshaw56]

Denise56 I have the same promblems as you I have pain in vangina retum and burning like cystitis feeling in bladder I have had this 24 7 for 2 years chronic pain I have been told it’s punderal neropathy . I no how your it’s evil

[Hidden in reply to Deniseshaw56]

Hi DeniseShaw56, I've been reading up a lot on 'high oxalates' and remember you mentioned that you have vagina pain/burning. This may be of interest bladder-help.com/oxalates-a... I think Medichecks do a urine test or you could ask your gp (nothing to lose is there) x

[Silvermouse in reply to Hidden]

that’s an interesting article, thanks. I’m currently waiting for investigative surgery on my bladder and urethra after MRI scans have shown a ‘bulky’ urethra (whatever that might mean) but no obvious signs of any cancers or similar. I’ll post the results on here but not sure how long I’ll have to wait, no appt yet.

[Silvermouse]

It’s Interstitial Cystitis with Hunners.

Well after all this time here’s the history. I am currently completely pain free and have been for the last 5 weeks.

I have seen gynaecologists, orthopaedic specialists, had ultrasounds, MRIs, transvaginal scans etc etc. You name it, it’s been explored and absolutely nothing of any significance showed up and meanwhile I had become almost housebound with pain and terrified of going out in case I got a really bad episode in public where I could do nothing other than gasp in pain with tears rolling down my face. It wasn’t often as bad as that but the fear of it was with me permanently.

The only thing that showed up on the MRIs was a thickened urethra so the next stop was a consultant urologist who suggested I might have restricted flow in my urethra so he would do an exploratory op and a urethral dilation.

What he found was my bladder was very inflamed and almost raw in places with Hunners ulcers. These were removed and cauterised, he also did a bladder distention as all the signs pointed to Interstitial Cystitis. He did a urethral dilation but the urethra didn’t seem that constricted. So basically since I had this done I have had no pain at all. I have to say that I am still very careful with what I eat and drink and try and keep away from obvious bladder irritants. Alcohol is a real problem so thank goodness I don’t drink much so it was easy to stop completely.

I have been offered a new treatment called Cystistat (available in the UK on the NHS) which is six weekly treatments via catheter and then a regular maintenance top up - perhaps annually? - I’m not sure if the length of time is condition related or time related. It isn’t a cure but a coating that sticks to the bladder lining (I think that’s how it works) and so prevents any irritants coming into contact with lining damage.

I hope this information is of help to someone. I ended up having my initial tests and op by paying privately (Nuffield UK) as I was so desperate to get a diagnosis and treatment and it was taking so long on the NHS. I won’t answer cost questions on here as treatment is individual so not necessarily cost comparable. Let me just say it wasn’t anything like as expensive as I thought it would be.

If anything else relevant crops up I’ll post again but meanwhile I hope you all find some relief one way or another, it is a horrible condition to cope with - SilverMouse.