hip pathology/pain and PN

[some-velvet-morning]

Hi all,

Hoping someone can provide me with some guidance about hip issues and PN and which direction I should take next.

I'm 31, female and have been experiencing symptoms of pudendal neuralgia since Oct 2019. It started as urinary/bladder pain (constant urgency from 1 Nov 2019) and in July 2020 became right-sided vulva pain, foreign object feeling in vagina, right perineal pain, right sitz bone pain. Symptoms shift: sometimes bladder pain is more prominent, sometimes vulva pain. Vulva pain is reasonably well controlled with high doses of amitriptyline and gabapentin. Without that, I'd also have right-sided PGAD and right-skewed urethra pain. No surgery, childbirth, weight lifting or recent cycling.

I've also had right-sided SIJ pain at least as long as I've had bladder pain and right hip/groin pain since summer 2020, escalating to the point that I can barely walk now. I fail most PT tests for hip pathology and can't put much weight on my right leg (eg. can't stand just on my right).

Several excellent pelvic floor PTs have identified refractory spasm of my right obturator internus, levator ani and coccygeus muscles. No one has been able to sustainably release these muscles, partly because any stretching that involves internal hip rotation is either physiologically impossible due to my hip or causes a serious hip flare.

There are two leading theories about my pudendal neuralgia origin and thus treatment path:
[1.] Right hip pathology: In my right hip I have a full-thickness labral tear, CAM type impingement and moderate hip dysplasia. i'm aware of the link between hip pathology and pelvic pain. I've seen Dr. Coleman at HSS and he thinks the hip instability is a likely cause of my pelvic floor spasm and thus PN symptoms. My hesitancy is that I'm not just looking at a labral tear repair, I may require a PAO for the dysplasia, and that I'm worried there might be another cause to my PN issues and potentially also my hip pain.


[2.] pudendal nerve damage as a result of anal sex: In early Feb 2019, my very well-endowed former husband coerced me into having anal sex with him. I was experienced with anal sex, but mostly with a smaller partner, but he was very rough with me, against my protestations. I regard the incident as a sexual assault. For about a month afterward, I had a feeling of a foreign object in my anus and occasionally in my vagina. This subsided. My pelvic pain ordeal started as bladder pain 8 months later.

I know people with pudendal nerve entrapment/damage often present with spasmed pelvic floor muscles (which makes distinguishing PN as a result of MSK issues and actual entrapment different). Could this muscle spasm secondary to pudendal nerve damage be causing my hip pain? I haven't seen anyone with pudendal nerve entrapment or damage that required decompression report this degree of hip pain/disability.

Relevant points

* My perineal and vulva pain is often aggravated by walking. Sometimes I'll get stabbing pain with every step. Sitting doesn't seem to worsen my pudendal symptoms although I frequently sit on a pudendal nerve cushion because my vulva hurts to the touch.
* The timelines don't quite line up. Bladder pain started 8 months after the anal sex incident. My vulva pain started 17 months after it, in July 2020. The vulva pain was exposed when I tried to slowly taper down amitriptyline because it wasn't helping my bladder so it may have begun earlier but been masked. But I certainly didn't have that symptom when I started amitriptyline for bladder pain in late December 2019. Could nerve injury show up months - years after the event?
* I've mentioned this possibility to several pelvic floor PTs and they thought I would have had sharp/burning pain immediately from nerve damage. What I had instead--feelings of rectal and vaginal fullness--is more common with pelvic floor spasm. They think if it contributed it did so by just aggravating some existing pelvic floor issues I had.
* I sometimes show some genitofemoral or even ilioinguinal nerve symptoms, with burning over my pubic bone, in the crease between inner and outer labia on the right. The dermatones overlap to a certain extent with that of the pudendal nerve. I've had no nerve blocks to confirm where this is actually coming from (afraid of flaring) but am looking into this.
* my right hip feels unstable and has since last autumn
* not sure if I'm just catastrophising about the nerve damage, likely due to the trauma of the sexual assault
* insidious onset of hip pain, which is typical with dysplasia. Pelvic pain also evolved over months.
* one PT thought the hip was the driver of my pelvic floor pain rather than vice versa because my hip dysfunction doesn't improve when my pelvic floor is released. She spent a long period of time releasing my pelvic floor one day and for the next hour I felt like my hip was going to fall out of its socket.
* hip pain flares with activity. Nothing but gentle walking is really possible but that aggravates my hip a lot. In an attempt to reduce my hip pain I haven't left the house in a week (live in a major city without a car so going anywhere requires at least a half-mile of walking) and my hip pain isn't gone but is reduced.

I'd vastly prefer to have a hip origin to all this because the outcomes for pudendal nerve decompression surgery are so poor. But I'm wary of having a PAO if it's not going to help.

Basically I don't know what to do:
a.) pursue hip angle and have labral tear repair and possible PAO for dysplasia. I have a hip appt on the NHS next month. This will be the first time I'm seen by a dysplasia expert.
b.) pursue pudendal nerve treatment, travelling to see a PN expert (probably Hibner)
c.) get genitofemoral and ilioinguinal nerve blocks and rule that out

Does anyone have any thoughts or recommendations? I live in London. UK and US passports but no US health insurance.

[nypain]

I don’t have an answer for you but I am sorry you are suffering. I have predominantly right sided PN and noticed hip pain on that side as well right before my nerve block, which still persists. Hoping you get an answer.