Health Organization for Pudendal Education

I'm interested in what urinary/bladder symptoms people have as a result of PN and if treating the PN has helped bladder symptoms.


Background: I have suspected PN (right-sided vulva and perineal pain and dysesthesia, right ischial tuberosity pain, foreign object sensation in vagina and anus). Developed these symptoms in the summer of 2020, but have had constant bladder urge/bladder pain since November 2019. I'm trying to figure out if/how they're linked.

My urinary symptoms are: constant urge to urinate from the bladder, worse after voiding and after bowel movements. Bladder burning. Sometimes get relief from bladder pain when I need a bowel movement (think this is because the bowel signal occupies my PN so the bladder signal can't get through). Don't believe I'm diet sensitive: the IC diet never helped at all. But I'm so up and down it's hard to tell. Sometimes have weak stream, difficulty emptying my bladder. I very occasionally get frequency and urethral pain (skewed to the right, which is my PN side).

There are three theories:
1.) I have constant urge to urinate/bladder pain because the PN conveys bladder urge and if it's irritated it's constantly signaling that my bladder is full.
2.) I have bladder-based interstitial cystitis and the pain has just spread to nerves (But why just on the right side? I have zero nerve symptoms on the left. Also have lots of PN pain that's not near the bladder--eg right sitz bone)
3.) They're unrelated and I have IC/BPS and PN (seems kinda improbable because they developed within a year of each other and I had no problems before this).

I favour theory #1. My hesitation is that a lot of people with PN report urethral pain and that's not a common symptom for me at all. I'm almost exclusively have bladder pain. I know the constant urge to urinate is a PN symptom but it's never really specified where it's coming from (bladder or urethra). It's also sometimes hard to believe this amount of bladder pain is coming from my nerves.

The origin of my PN is a mystery. No surgeries, no childbirth, no major trauma, no recent cycling, no weightlifting/squatting. Current thinking is that it's a musculoskeletal/pelvic floor issue and/or possible orthopaedic hip injury. I have right SIJ dysfunction/pressure/pain tightness and lots of right hip and groin pain (that hip also pops). Might also have some genitofemoral involvement (right pubic bone burning). I've been doing physiotherapy for 6 months but it hasn't helped yet. My PT admits she's stumped and I'm planning on travelling to see a PN doctor when I can leave the UK.

I'm 31. I have severe depression and PTSD as a result of my symptoms. I'm rapidly losing my ability to cope with them.

If anyone can share their experience with bladder symptoms and PN or point me to accounts I'd be very grateful!

Hello,

I have pain in the areas innervated by the pudendal nerve and, while I don’t have the constant feeling that I need to urinate, I do feel the urge to go when my bladder is at 30-50% of normal capacity. It sounds like bladder issues are your worst symptom. Have you (or your doctors) considered a urodynamic study? Just an idea, it might give some useful information about your bladder function and the nerve and muscles. My issues began many years ago pretty suddenly, but after a bad fall. Sometimes bladder issues can originate at the spine, so that’s something to consider if your doctor is willing to do an MRI of the lumbar spine and sacrum.

Stephanies

Hi, thanks for the response.

The bladder stuff is definitely my most constant symptom but the vulva pain/dysesthesia is the most disturbing to me. I've had periods where that is the predominant symptom and the bladder pain has been very minimal but I've never been able to figure out why. They tend to swap a bit. I wonder if that's a result of the nerve being compressed in a different way.

I haven't had urodynamics because I don't have incontinence or retention and void normal amounts. My urinary symptoms are almost exclusively the constant urge to urinate but I know the difference between a full bladder and false urge. Investigations have been messed up by pandemic but the theory of the urologists I saw (before they kicked me over to a pain management clinic that told me I'd be in a pain forever) was that I didn't have a bladder problem (eg. IC or overactive bladder) and the bladder pain was likely part of a wider pelvic pain syndrome. They thought this even before my other pain developed because I'm worse after voiding than as the bladder fills. You'd think if I had a bladder wall problem I'd be worse with more urine.

Had a lumbar/sacral MRI and it showed an annular tear at L5/S1. I had local anaesthetic injected into this tear to see if it resolved my symptoms and it didn't seem to help. However, they think it's possible I wasn't having enough symptoms on the day to tell. I don't think L5/S1 is near the nerve roots for the pudendal nerve though?

Hi, any update? I saw your other posts as well and I have never read symptoms that followed mine almost exactly!