u/Gish996

I’ve had a tight pelvic floor which then led to pudental neuralgia and vulvodynia. I’ve had this for 2.5 years. For the first year, life was somewhat okay. I had itchiness spams in the labia here and there and have had occasional flare ups but it would be over throughout the course of days. Also, pain with sex is happened but I’ve always been able to manage. For the past 8 months, I haven’t been able to sit on flat surfaces because I feel a lot of pressure and itching in the rectum. So for the past months, I’ve only had rectal symptoms due to PN. But now!!! For the past 2 weeks I’ve had awful burning sensation in the vestibule that goes all the way the labia and clitoris. It literally feels like the labia is so swollen and tight. Vestibule is on fire. Also, the area is very sensitive to the touch and burns when I pee. Walking is hard because everything rubs against each other. It’s so so painful and I don’t know how to make it stop. I’ve been mostly focusing on rectal symptoms with pelvic PT so now we need to pivot. However, my PT’s theory is that the roots of pudental nerve are maybe being pressed by the coccyx so she makes me do a lot of coccyx related exercises. When she does an internal exam, she tells me my pelvic floor is not that bad but I don’t understand how my pelvic floor can’t be that bad if I still have these new symptoms in the vagina! I still do the coccyx exercises she gives me but now I’m stressed because I’m getting worse and worse. I just don’t understand where these symptoms are coming from when they were never this strong before or long lasting. This is after trying 3 different PTs, 2 round of nerve blocks and Botox.

I got an MRI for pudental nerve entrapment due to my symptoms of rectal pain and itching. My symptoms are very strong but somehow I don’t have nerve entrapment? Insane?

TECHNIQUE: Multiplanar multisequence MRI of the lumbosacral plexus after administration of 5 cc of intravenous contrast.

FINDINGS:
Lumbosacral plexus: Normal course, morphology, and signal intensity of the lateral femoral cutaneous nerve, pudendal nerve,
obturator nerve, and posterior cutaneous nerve bilaterally.
Femoral nerves: Intact.
Sciatic nerves: Intact.

Muscles / Tendons:
Iliopsoas: Normal muscle signal. Unremarkable tendon.
Piriformis: Normal muscle signal.
Gluteal muscles:Normal muscle signal. Unremarkable gluteus medius and minimus tendons.
Hamstring tendon:Normal signal. Unremarkable hamstring tendons.

Joints:
Sacroiliac joints: Normal right sacroiliac joint. Mild edema along the left inferior margin of the sacroiliac joint laterally.
Pubic symphysis: Intact.
Hip joints: No hip effusion.

Bones: Normal marrow signal.
Vessels: Normal flow voids.
Abdomen / pelvis: No significant abnormality in the visualized posterior abdomen and pelvis.

OTHER: Susceptibility artifact from battery pack with leads extending through the left sacral neuroforamina and into the left
presacral space. Pelvic floor is low-lying; directed clinical assessment suggested for rectocele.

IMPRESSION:

1.\X09\Unremarkable lumbosacral plexus MRI without evidence of pudendal nerve entrapment.
2.\X09\Mild edema and enhancement of the left inferior lateral sacroiliac joint cord with mild sacroiliac anteriorly.

Need some tips!!! My vagina is super swollen, tingly and itchy and I don’t know how to make it better!! I don’t have pelvic floor PT until next week and the discomfort is so so bad D: I’ve tried a cold pack, sitz baths, creams. The lidocaine reduces it by a little but then it comes back with full force.

I guess I’m writing this as more of a venting sesh but also seeking advice on how to keep my mental health intact. I was diagnosed with PN when I was 27. I just turned 30 a day ago. I hate that for the later parts of my 20s I’ve had to deal with this god awful condition. Things were bad when I first got diagnosed, I was terrified of all these new sensations within my body. After being diagnosed and seeing a pelvic floor therapist and getting on the usual medications, I was able to handle my symptoms pretty well. The pain and itching sensation in the rectum and vagina was there but at a low volume. However, this past September, after a bad constipation episode that made me bleed, it’s all been downhill from there. The itchiness on the rectum never goes away, so to help, I had to start using a cushion to sit on. If I don’t sit on it, the rectum itches and I feel a lot of pressure on it. I’ve been on 600mg of lyrica. Things had been okay Feb-March, but earlier in April I might have had a hard poop and pushed through a PT exercise that caused me pain and little by little I’m downhill again. Added on top of that, I was dumb and forgot to request my medication and wasn’t able to get lyrica for a week. But what’s worse is that now I’m getting new symptoms? Like the itching sensation on the rectum feels very strong, the bottom of my buttcheeks are hot to the touch and burn, the ligaments towards the side of the vagina feel tight and weird, it burns to pee and there is also itchiness at the vaginal opening. It’s all bad and horrible. I also live in a city that has a lot of public transport so I constantly have to be walking or moving and it’s hard to do when my asshole is on fire. It’s like I’m in this pit of darkness looking for a way out but there’s just a void. I’ve tried things. So many things. Been in PT for 3 years, different therapist, same clinic. I got pelvic floor Botox, I got 2 nerve block injections, 1 did not work on the right side, second one worked on both sides but lasted a week. Next procedure: ganglion blocks. I’m frustrated of trying and not being able to understand what is flaring up my body. I wish it could to tell me what’s wrong and then I would fix it!!! If only. Also, my pelvic floor is overcompensating because of my weak core but when I try to strengthen my weak core, it flares up my symptoms. I don’t understand how I’m supposed to get better. My PT is trying to give me gentle exercises but I don’t feel like they work. Obviously this has a lot of impact on my emotional state and everyday life’. I’m so unhappy, disappointed, and heartbroken. Work is stressful. Life is miserable and I don’t know how to get out of this or who can help. I’ve asked about PN entrapment surgery to a doctor. He told me I don’t need it but how could I not when there is something genuinely wrong with my body! You can’t see it, but it feels so so so strong.