My Story - Searching for Diagnostic

[Raissa]

Hello,

For several years I have been suffering back pain in the sacral region more on the right. Since June last year my symptoms have worsened and they have gone to the perineal area feeling pain, burns, and tingling in the lower belly, in the vulvar area more precisely in the area of ​​the urethra and clitoris, but also in the anal area, and numbness feet, these being accentuated at the sitting state and after a long walk. Also I can't lie on my back on a smooth / flat surface. I did several investigations and excluded the problems of the coccyx, horse tail syndrome, gynecological problems including sexually transmitted diseases. I also did several MRIs, one for the entire spine where I have two small changes of the spine but not something to give me these symptoms and hernias were excluded, basal MRI of the sacroiliac joints, excluding ankylosing spondylitis, pelvic MRI, as well as many blood and urine tests.

Since the symptoms became more pronounced, since June last year, I have been reading on the Internet trying to find a cause that leads to a diagnosis. That's how I came to realize that it's a pudendal neuralgia. I`ve decided to see Dr. Durtnall in London. I know some people have different pain and sensation of the body (rectal, vaginal, lower back, urethral etc). I have this symptoms on the surface of the skin and only sacral pain is inside which goes to the right butt and hip.

Having all this symptoms do you think I should be afraid my nerv can be affected in multiple places?

Also any advice, help or guide what can be done to relief from this pain until I`ll see Dr. Durtnall.

Thank you very much

[ithurts]

Hello Raissa,
I am having similar symptoms to yours and am also considering seeing Dr. Durtnall in London.

Can you tell me if you saw him and if so,what were your impressions. Was he helpful to you for these problems and diagnosis?

[LondonRun]

Dear all who are still looking for a diagnosis,

I was on this forum from January 2020 to about mid 2020. I was diagnosed by a London neurologist with Pudendal neuralgia. It took him 10 minutes to decide, based on my one sided pain by my labia and near the sitzbone. Steroid injection into the nerve did not help. Had lots of internal physio. Did not help. Finally accepted the offer of my GP to try Gabapentin, then pregabalin, then amitriptaline. Nothing stopped the pain. I saw Dr Durtnall. Very nice. Did not improve my pain. Saw Dr Baranowski. MRI showed no injury to the pudendal nerve. He suggested mental help through therapy to learn to cope with the unexplained pain. I also was having pain around my sacrum (S2/3/4) and went to see a sports doctor in London. She organised a an ultrasound by a very good radiologist. She saw within a few minutes that my Posterior Femoral Cutaneous nerve (PFCN) on my right was surrounded by inflammation (seen as a ‘helo’ on the screen, she showed me). This nerve provides sensory (at skin level) sensation to the labia and scrotum. A diagnostic injection confirmed this.

I wanted to share this with you all in case it helps anyone with sensory rather than functional issues: it could be an issue with the PFCN. It runs under the glutes, by the piriformis. It originates in the sacral ramen, right where I have my sore spot. That one I am still working to resolve. Good luck to everyone in their recovery.

[stephanies]

Hi LondonRun,

There is definitely some overlap in the innervations of the PFCN and the PN. I am glad you figured out the source of your pain and hope you find relief. Thank you for sharing your story.

Stephanies