Health Organization for Pudendal Education

Hello,
I have been suffering for years of chronic pelvic pain. I’ve had three surgeries to try to fix this issue. After a miscarriage and delivering my own baby in the hospital on the bedside commode without medication I developed anxiety and depression and these problems just got WORSE. Last year I begin to get trigger point injections inside my vagina with minimal improvement. The doctor said that I had so many knots inside my vagina it was consistent to a rape victim...after explaining that I haven’t been rape it was suggested that it was a psychological issue. The OBGYN prescribed vaginal and anal suppositories of muscle relaxers and gabapentine with no improvement. I have done acupuncture, had hip injections, facet blockers and even Piriformis muscle injections...nothing has improved. I have been diagnosed with Myofacial pain syndrome, fibromyalgia, sciatica, hip/femoral acetabular retroversion, tilted pelvis and so on...My OBGYN doesn’t know what to do and is considering sending me get botox Injections...however my symptoms seem like PNE... I am currently unable to work or sit let alone stand for longer than 20-30 mins sitting and maybe 10 standing...these very activities make everything burn and makes me tired...the doctors say it’s because I’m obese need to loose weight and need a double hip replacement. I’m at my wits end I simply can’t take my pelvic floor therapist telling me to control it with my breathing and to retrain my brain to adjust my pain threshold when I’m in constant pain. I also am tired of taking muscle relaxers 2-3 times a day, Percocet, diluadid, gabapentine, mood stabilizers, antidepressants, anxiety medications, with no explanation or will thereof of my doctors to help me...so hopefully I can get some help from you all...I have been researching therapists outside of my primary care...I started calling providers but I simply can’t afford $100-200 co-pay as I am unable to work with special needs infants toddlers and adults and waiting on disability. I was referred here by one company and was told of scholarships available to help me get seen, can someone assist me in finding scholarships so I can get seen and treated I’m HOPELESS AND DESPERATE and ready to give up

Thank you for your time

Hi Sirbrinna,

Welcome to the forum. I am sorry to hear you are really struggling right now.

I have replied to you via private message regarding patient financial awards. It sounds like you are having a difficult time finding treatments that help. Is your current pelvic floor PT not knowledgeable about treating patients with pudendal neuralgia?

You mentioned you have had 3 surgeries and that you think you have PNE. Figuring out the cause of PNE can be a real challenge. Do you have any idea what caused your initial pelvic pain?

Violet

Hi Violet,
Thank you for replying to me. I can only attribute this pain to when I fell from a chair while removing Christmas decorations . That’s when everything started. My PT is convinced that my pain is coming from my hips only because I do have femoral hip retroversion. My OBGYN thought I was raped because my left side of my vagina was full of knots. He gave me trigger point injections where it was painful not X-ray guided. He said it has to do with my hips as well... the pain starts in my vagina, goes to my buttock, my thigh all the way down my leg etc. because of this they said it was sciatica and possibly the Piriformis muscle. I just received an injection in the Piriformis muscle last Monday and the pain is still there. They have never checked for PNE even though I requested it. I am trying to see an outside PT that won’t piggyback of another doctor because now they are saying it’s fibromyalgia but I’m very specific where my pain is...and I feel like if any of the OBGYNs took the time to feel the inside of my vagina they would of felt the knots and not just recommend surgery after surgery.

If the pain is going down the inside of your leg it could be due to the obturator internus being in spasm. The pudendal nerve runs in the canal beside the obturator internus muscle so if one is irritated, the other might be too. I agree that a pelvic exam by someone who knows where all the different muscles and landmarks are could be helpful.
Violet