Health Organization for Pudendal Education

New here, just wanted to share my story.
I have had chronic pelvic/vaginal pain since age 15. Now at 23 I'm still in agony every day of my life. I have not been formally diagnosed with PN or PGAD but everything I read on here perfectly describes me. I also have had some of the treatments for it. I have be diagnosed with IC, pelvic floor dysfunction, vulvadynia and ibs. It all started when I was diagnosed with a skin condition called lichen planus by Dr. Elizabeth Stewart(vaginal-vulvar specialist). After many months my skin was finally cured but the pain stayed the same. Ever since then it's only gotten worse. When I was 17(2008) I had 2 nerve blocks at Elliot Hospital with no improvement. At 18 I had emergency surgery to remove a huge ovarian cyst. I've tried many creams and meds with no success. I'm now on my second attempt at pt but nothing seems to be working. I've even tried the wholistic approach with reiki and acupuncture which never helped. I'm completely desperate to try anything at this point. This constant pain is ruining my life. With some adjustments and a shortened schedule I was able to finish high school. I started college, just taking two classes but was forced to drop out after the first semester. I have never had a job and I have a disability hearing scheduled in May. Now all I do is stay in bed and go to pt. I don't know what I should do next. This whole journey has been extremely difficult and embarrassing for me, especially since my symptoms started when I was so young. If anyone has any advice for me it would be greatly appreciated.

Hi
Good Luck.
I wish I had some advice to give you.

Ray

Wow, sorry to hear how long you've suffered. Have any narcotics helped? Have you tried Lyrica?

Hi PD13. I'm sorry to hear you have been on this journey for so long and that you haven't really had a chance to enjoy life much yet at your age.

Can't say for sure what I would do next if I were in your shoes. Just wondering what type of nerve blocks you had. Were they pudendal nerve blocks and did they help even for an hour or two? Have you had an MRI of the lumbar/sacral area, lumbosacral plexus, and pelvic area to rule out possible problems such as tarlov cysts? You can read Hermajesty's posts to learn more about tarlov cysts. Do I understand you correctly that you have PGAD as well as pain? Tarlov cysts have been associated with PGAD although so has pudendal neuralgia so it can be a bit of a trick figuring out the cause for each person.

Some people on this forum would probably suggest trying a mind-body approach to pain relief. You can read Ezer's posts if you are interested in trying this approach. Other's on the forum would be more likely to recommend medical treatments such as surgery, neurostimulation, and pain pumps. So much depends on your history, clinical exam, and symptoms it's hard to say on a forum what is the next step but you definitely have some options. Hopefully you will get some valuable information from browsing through the forum.

Take care,

Violet

Hi PD13,
I'm not sure where you live - MA/NH area maybe?
If so, have you seen Dr. Mark Conway, yet?

Kind regards,
Karyn

I am so sorry to hear about all that you have been through. The good news is, there are options for you that have not been tried yet. Like Violet said there are several approaches to try. Find a good pain specialist and if there is a good pelvic pain specialist in your area they can be vital. You can discuss with them about some of the treatment options you have read about on this forum and determine what best fits you.

Keep us posted.