Health Organization for Pudendal Education

Hi Everyone,

I can’t believe how long it took me to find this site! For four years I’ve suffered alone. I’m a 27-year-old female. My shooting and burning vulvar/clitoral pain started in March 2020 w/ back to back yeast infections. I was diagnosed with a complicated yeast infection and on fluconozole 1x/wk for 6 months. Following this, I had vaginal flora testing which revealed no “good” bacteria present leaving me susceptible to BV/YI. Since starting on a daily probiotic, I have had 0 yeast infections.
Neurology stated I was having pudendal neuralgia symptoms, low on all b vitamins and potassium after stopping birth control. EMG testing = normal. I believe the infections led to my nerve damage/neuralgia.

Currently take:
- Daily probiotic 25 bil CFUs
- B12, B6, Folate 1000 mcg methylcobalamin sublingual
- 400 mg magnesium
- Escitalopram 5mg (trying to get off this)
- Nortriptyline 35 mg (works the best)
- 50 Pregabalin (doesn’t seem to help at all)

Nortriptyline helped until 2022 which is when it stopped working as well and I started experiencing redness/burning in vestibule + clitoris. I have had times of virtually no pain but those “remission periods” are becoming few and far between.

I also have trigeminal neuralgia that I’ve had since teenager after a dental procedure. It hasn’t bothered me until recently.

I have tried acupuncture, low-oxalate diet, yoga, pelvic physical therapy x2, pelvic botox injections, biofeedback, reiki, medication (gabapentin, pregabalin), supplements (alpha lipoic acid 500 mg), nerve blocks, PRFA, cryotherapy, vaginal suppositories, hormone/gaba creams.

Nerve blocks eradicate the pain for 24 hours. I believe my pain is neuroinflammatory in nature. My pain fluctuates daily, and like I said I have had periods of “remission” with no pain at all.

Things I not tried but want to hear from members of this forum if you have:

Shockwave therapy
-Different medications: amytriptyline; duloxetine; carbamazepine
-SPRINT temporary implant
-Rhizotomy or gamma knife radiation?
-Amnio/PRP injections?

TIA! Trying my best to stay positive, so please don’t scare me I have a very supportive husband and family, but this condition is difficult to deal with as you all know.

Hello and welcome to the forum. I wish you could be here under better circumstances, but it sounds like you are a very pro-active person so hopefully you will be able to get your normal life back soon.

The only item I have tried on the list of things you are considering trying is duloxetine, but I found that escitalopram worked better for me than duloxetine. Some people do really well with duloxetine though. When I eventually quit taking escitalopram, I weaned off very slowly over the course of a year in order not to shock my system. You can do a search in the upper right-hand corner of this forum to search on specific items from the list of treatments you are considering, to see if people have posted about them in the past.

Wishing you all the best,

Violet

Thanks Violet! I see you’re very active in these forums, so thank you for giving people hope and offering advice on this terrible condition.

Well, I wish I had some better answers for you. You've been dealing with this far too long. I think it's significant that nerve blocks helped. Have you seen any docs who specialize in pudendal issues?

Violet

Yes, I’ve seen the Goldsteins, Dr. Moss, and Dr. Hibner. Hibner recommended PF Botox which alleviated my spastic PF, but didn’t help the nerves and it seems like it “flared” everything up. I’m currently trying to schedule another consult with him to see what next steps would look like. Which is another reason I have posted in the forum to see if anyone else has tried these treatments to inquire about them.

Dr. I. Goldstein recommended I get a vestibulectomy which I don’t agree with because as I said before I have had periods of pain free intercourse.

Sorry to hear Botox didn't work for you. Typically, it's a temporary solution anyway, but even temporary pain relief can be valuable.

Since shockwave therapy is one of the items you are considering you could do a search in the upper right corner on the word "shockwave" and a lot of posts come up from people who have tried it. Just skimming through the first several pages of posts it seems that most people did not have luck with it, but I didn't read all of the posts. You could also do a similar search with the word vestibulectomy. But the stories on this forum are just anecdotal and not scientific studies that show the success rate of a procedure. So you have to keep that in mind too.

As far as having a rhizotomy, since the pudendal nerve controls bowel and bladder functions you would have to consider the risk of becoming incontinent. The people I know of who have had branches of the pudendal nerve cut such as the dorsal clitoral nerve did not have good results, but the surgeons may have patients who have had success with it.

Violet