Health Organization for Pudendal Education

Hi there! After I read Violet's article "Taking the Shame Out of PN" I felt that I finally had an answer. After 2 years of terrible pain,specialists, medications, colonoscopies, an unecessary gonadal vein embolization surgery, I feel like I may finally be able to get some relief. But no doctor is sure? I live in Vero Beach, FL and have been driving down to Cleveland Clinic in Ft. Lauderdale for care. The pain management doctor there says he can try a pudendal nerve block? The neurologist there says she can try botox injections in my rectum (where my pain mainly is).

I have tried physical therapy (pelvic floor therapy) for many months and no relief. It's been very painful to sit for 2 years. It feels like I'm sitting on an ingrown toenail. Sometimes it's pinching, sometimes burning, always in my anorectal area. Sometimes my whole vaginal area hurts, too. The gastro says nothings wrong with my digestive system or colon (except a little colitis) which he put me on Lialda for, the gynecologist says my reproductive system is fine except for some normal small cysyts in my uterus. I asked, could it be rectovaginal endometriosis, but after rectal exam and MRI the gyno said probably not. The neurologist says I have spondolysis at L1-S5 and some nerve compression there, but doesn't believe that would cause rectal pain. She says it "may be" levator ani and I should do botox injections. The pain management doctor says it could be pudendal neualgia so "maybe" a nerve block would help. I've never been so frustrated and depressed in my life.

The only thing that I can think that has happened to me of is in 2014 I had a bartholyn gland/cyst removed, but all the specialists (except pain management doctor) agreed that most likely has nothing to do with it. I fell on my tailbone in summer of 2016, but it only hurt for an hour then went away. My pain began in February 2017.

Now I have to choose whether to do botox injections or a pudendal nerve block. Both very expensive. I am already making monthly installments to Cleveland Clinic for my $75,000 surgery which didn't work. Can anyone give me some advice about some questions I could ask the doctors to help guide me with my decision and which doctor I should ask? Thanks so much for any help. At this point, I am desperate for hep. Thanks again!

Try going to healthboards.com. Google levator ani. There is a gentleman on there who had 3 rounds of Botox with a Neurologist at the Clevland clinic in Fla. He had complete resolution of his pain.
I faced the same question a year ago. I opted for the Botox but it did nothing for my pain. I have declined a pudendal block.

Thank you for responding Patty! What did you end up doing to help? I’m scheduled to do both but really can’t afgord both because I’m still paying off surgery. Thanks!

Nothing has helped my pain. I take Nortriptyline 50mg at night, tramadol suppositories and Diltalizem ointment. I've considered PT pelvic floor again but still paying off what I spent 3-4 years ago. Over $10000.

I'm so sorry Patty! I wish your outcome was better. I am taking tramadol orally for pain and just started gabapentin because I have some significant spine problems as well. Which specialist prescribed you tramadol suppositories? I've heard of valium suppositories, too. Have you thought about going back for pudendal nerve block? I had an unnecessary surgery this past summer and it was very expensive. It can be very depressing I know but I'm trying to keep the faith.

A diagnosis of levator ani syndrome won't necessarily tell you what is causing that muscle to be in spasm. It could be PN that is making the muscle tense. At least that's what caused a tense levator ani muscle in my case. I think that before trying Botox, you would want to try an injection of bupivacaine into the levator ani muscles first just to give you an idea as to whether Botox might help. At least that is what Noor Gajraj recommends in his scholarly article on Botox to the obturator internus muscle. http://www.pudendalhope.info/sites/defa ... Gajraj.pdf

What was your PT's assessment of the pelvic floor -- did they press along the course of the pudendal nerve and if so, was it tender? Is your pain on both sides or just one?

If you are experiencing financial hardship due to an illness sometimes the hospital will write off a good portion of your bill. That might be something you want to apply for.

Violet

Tha Bartholin’s glands are innervated by the PN, so it is possible that your nerve was affected by your surgery. Here is a mention of the relationship:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4483306/

I hope if you decide to try Botox that it is a success for you. I understand how difficult it is to figure out what to do when so many of the diagnostic procedures or potential treatments are so expensive.

Hey veromom,

Just curious if you ever got any relief? I was google searching and this post came up. I am also living in Vero. Let me know and maybe we can talk.

Thanks

Please explain how the dr will put Botox in the rectum. My dr said that is impossible