Health Organization for Pudendal Education

Hi,
I am a new person on here so I just thought I would introduce myself. I believe I have some sort of pudendal damage based on my symptoms. Unfortunately it seems to be getting worse. The short version of my story is that late in my 3rd trimester 9 years ago I had a lot of pelvic pain and a persistent arousal feeling that didn't go away. I had to have an emergency c-section. I thought the arousal/pain feeling would go away after pregnancy but it did not. It took several episodes of "taking care of it" which were completely without any type of desire on my part and could take up to 2 hours for one orgasm. The pain persisted but it was the arousal that drove me crazy. Not to mention the embarrassment and shame. I sought countless doctors, was given two incorrect tests for interstitial cystitis and a complete hysterectomy. With the hysterectomy they found that I had severe adhesion from the c-section but everything else was fine. Unfortunately I was not aware that I could have opted to keep my ovaries so I did not. I was finally given the correct test for interstitial cystitis and was found to have that. I am not able to take those medications however. I find that if I cannot have an orgasm I am in extreme unrelenting pain that increases and does not ever go away. If I can than the pain becomes more bearable and then increases again. I have since been diagnosed with IC, pelvic floor disorder, vulvadynia, and lichen. 23 doctors later. They just did a ultra sound guided pudendal nerve block with marcaine. The after effects and procedure were horribly painful. I have had extreme tail bone pain for 5 months now and I think I am getting worse.

So that is my personal sob story. I am hoping to get more info on here and I am very grateful that I found you. I am sorry for all of your pain. I am very scared that I will never get cured from all of this. As of a few months ago I could at least sit although I cannot tolerate any type of movement or vibration. I am wondering if there is anyone else out there who has a story similar to mine.

My pudendal issues were pregnancy or birth related too, although I had IC prior for many years. The entire time I had IC, I had an undiagnosed injury to the pelvic joints (sacroiliac joint, pubic symphysis, and articulation of the pelvis in relation to the hips). Most often all pelvic joint dysfunction is referred to as SIJD, Sacroiliac Joint Dysfunction, but in fact the pubic symphysis in particular is very vulnerable during pregnancy - although really the whole pelvis is vulnerable. The hormones of pregnancy loosen the pelvic ligaments to allow passage of the baby, and this coupled with the weight of a 3rd trimester child can cause something to get out of joint. A good physical therapist can tell you if joint injury is contributing to your problem - it is an hands-on, PT diagnosis not an orthopedic, x-ray diagnosis because it is a problem of physiology (movement) rather than of the anatomy one sees in a picture.
I don't know whether I sustained more injury to the pelvic joints in pregnancy, but did develop herniations of the nerve roots leading to compression and pudendal neuralgia. These are called tarlov cysts, and I had mine corrected surgically. They should be ruled out, especially because of the tailbone pain. Another possibility in entrapment of the pudendal nerve in scar tissue or in the ligaments, which can be addressed with pudendal nerve decompression surgery. You will find many other possible pathologies and treatments on this board: best to start with most conservative 1st which is Physical Therapy.
Many of us have similar issues to yours. If you were not aware, the hyperarousal you are experienceing is called PGAD - Persistent Genital Arousal Disorder, and you will find other people who suffer with that if you search the term on this board. It is just one manifestation of neuropathy. All of us have nerve compression or damage, but we all experience it differently, be it hyperarousal, pain, numbness, itch, tingling, electric shock, etc.
With IC I have found drinking very large amounts of water and holding it as long as possible will stretch and relax the bladder, reducing spasms. Lots of water also dilutes irritants in the urine. I take no meds for my IC but am very comfortable drinking 2 - 3 gallons per day. Try drinking a lot in a short period of time and see if urinating on a full bladder with a strong stream is less painful than dribbling small amounts of urine due to frequency / urgency issues which occur when the bladder is mainly empty.
Please continue to post and read as you will find ideas and help here.

Kate, I know another gal who developed PGAD after a difficult vaginal delivery. Haven't heard of anyone getting it from a C-section though but pudendal neuralgia can be triggered by any type of pelvic surgery, procedure, or trauma. Each of us has a slightly different story.

It's scary not knowing if you will be cured. I know people who have gotten much better including myself -- I'm not cured but I am much better and PGAD is close to cured.

Violet

Thank you for responding everyone. It is nice to meet all of you.

Nice to meet you too Kate . I hope that you will find answers here, I know that everyone here will always do their utmost to help if possible.
Take care,
Helen