It's not vulvodynia. This is interesting, because what is often Dx'ed as VVD isn't - it's this pudendal neuralgia mess. At least, according to my new doc - he says what I have "encompasses VVD" but goes beyond it. Sometimes (though not often), thank god for Old White Guy doctors. Dr. Stanley Antolak, in Edina, MN, came out of retirement to treat pudendal pain. He did a series of horrific tests on me to determine exactly where the nerve damage is (and it is nerve damage), then began a series of steroidal injections (blocks), which helped a bit...for a while. If I have sex, it's totally blown. Looks like I'm headed for surgery, I think, but not the kind where the pudendal nerve is destroyed - Antolak will go in and literally yank it over to a new place, on the theory that it's entrapped somewhere, rather than just inflamed.
At some point, I'll try to blog the experience at the U of MN pain clinic...probably after I report the treating practitioner to her board.
In the meantime, Prozac wore off (well, it has been seven years) and in the search for a new solution, plus lots of pain meds (I've been off 'em all for months now...but yay! the pain is still horrid!) and directly injecting things into my nervous system, I've been pushed into Serotonin Syndrome...let me tell you, that's a fuckin' day at the Fair.
How is everyone else doing? Thanks for checking in, Lora. Haven't wanted to write. It's been a really difficult two years.
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9 comments:
Hi Jennifer,
I'm glad you've finally got a more helpful diagnosis. I have pudendal neuralgia and vulvodynia, and pudendal neuralgia gives me the most grief.
I was ready to get nerve decompression last year, but by avoiding sitting I was able to also avoid surgery. My pain level decreased dramatically.
I'm eager to hear more about the tests you had on your nerve and more about your surgery.
I strongly recommend checking out pudendal.info and learning about women's experience with the decompression surgery. There are a lot of risks involved.
I'm glad you have a new professional who is really helping you. I hope that this brings you some physical and emotional relief.
Sometimes (though not often), thank god for Old White Guy doctors.
Here here! Every once in awhile... a doctor who you'd expect to be totally out of touch, who cannot possibly empathize with what you are going through,
turns out to overcompensate by learning as much as possible & doing something good.
I just hope this new guy knows what he's doing. I don't have PN so I can't fully understand what you're going through but it sounds so scary & so hard.
Hello, I just wanted to jump in and say thanks for posting. I’m actually a husband of someone that has had vulvodynia for roughly seven years now. She has gone through all the wonderful poking and prodding, biofeedback, non-traditional medicine, as well as many more. She even got involved in an experimental botox study, which, at least for her did greatly improve her symptoms. Since then we have had another child and after that the pain has come back. We did recently move back to MN so I’ll talk to her about this new Dr and see if she is up for yet another round of painful tests.
Thanks and good luck!
Hello it is me Mr Anonymous again. I was just wondering if you have had the surgery yet and if it has helped. My wife is now seeing Dr A as well, and not really seeing any significant relief from the nerve block shots. Looking for any advice on next steps. Thanks in advance and hope you keep up the blog!!!
HI, I had a horrible fall 2 yrs ago in which i landed directly on my ass. It caused a tremendous amount of pelvic/ back pain and nervousness, def prob with pudendal. after chiropractors neurologists and everyone else totally unhelpful, i was recomended an osteopath, they helped me out tremendously,with the pain and nervousness. i highly recomend them, as they can pinpoint soft tissue and nerve problems as well as bone. DO NOT go in for surgery until you have been seen by one. i was in pain for a long time and thought i was eternally screwed but they said they help people with ancient problems all the time. hope it helps guys i know nerve pain is hell.
also, i tried blogging about this, but am unable to make it easy to find through yahoo searches etc.please suggest this in one of yr blogs for people who arent reading comments, while i dont know yr situation it has helped me and if it can help someone else, amen.
You need some relax mind..
regards,
Rachel
Seattle Chiropractor
Dr. A performed surgery on my son in 2006. His pain is worse and I fear he has scar tissue problems. This was the worst decision we made. He is in constant physical pain and his mental state affects his work and social life.
As a sign of gratitude for how my husband was saved from neuralgia, i decided to reach out to those still suffering from this.
My husband suffered neuralgia and it was really tough and heartbreaking for me because he was my all and the symptoms were terrible, we tried various therapies prescribed by our neurologist but none could cure him. I searched for a cure and i saw a testimony of so many people who was cured from neuralgia. and so many other with similar body problem, and they left the contact of this doctor who had the herbal cure to neuralgia. I never imagined neuralgia has a cure not until i contacted him and he assured me my husband will be fine. I got the herbal medication he recommended and my husband used it and in one months he was fully okay even up till this moment he is so full of life.neuralgia has a cure and it is a herbal cure contact the doctor for more info on drwilliams098675@gmail.com on how to get the medication. Thanks for reading my testimony .
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