A colleague at work who forgets that I have pudendal neuralgia, not vulvodynia (still, at least she knows and cares, right) sent me a link to this article. Thought I'd share it in case some of you haven't seen it.
Guidelines for Management of Vulvodynia Issued
"Clinical care should follow the principles of general chronic pain management," the review authors write. "Treatment should be holistic and focus not only on the primary site of pain but on its subsequent impact on the patients' lifestyle and sexual functioning. The evaluation of different treatments is very difficult because published research on vulvodynia has many limitations with poor patient selection, limited follow-up data and a paucity of randomized clinical trials."
"These guidelines act as a starting point to aid doctors and other healthcare professionals in the diagnosis and management of vulvodynia, and to increase awareness and education on the condition," the review authors conclude. "The clinician should play a role in the assessment and diagnosis of vulvodynia and liaise with colleagues in difficult cases. Team work should be nurtured and developed."
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A blog, it turns out, about pudendal neuralgia (not vulvodynia, as we thought for two years) - treatment, pain, other assorteds.
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minimal stuff about me
- Kate
- United States
- I'm married, have a young child, and developed pudendal neuralgia in January 2007 - literally overnight. Well, the Sx appeared overnight. I have another blog, but that doesn't feel like the right forum to write (vent, scream, bitch, etc) about this, so here we are, at vulvodyniasucks.blogspot.com.
12 comments:
Disclaimer: I didn't read the whole article--just your excerpt.
I am so tired of hearing of doctors who send pelvic pain patients on their way with lidocaine ointment. Or an anti-depressant prescription.
One doctor told me, "Well, the good thing is, vestibulitis patients normally grow out of the pain." WTF? So I'm just supposed to wait around until I "grow up"? That was pre-PN dx, by the way.
I agree that the vast majority of us need to be treated as chronic pain patients with a comprehensive treatment plan that involves a team approach.
At least your coworker cared enough to send this. To an outsider, I'm sure vulvodynia and pudendal neuralgia are easily confused.
OMG. The word verification was "poonsord."
Why yes, it does feel like a sword is up there, thank you very much.
I am now in my 6th year of this BS and am still sitting on ice 24/7 - who lives like that? I am off narcotics but now have other health issues. I am tired, sick, sick of pills, insurance companies, trying to make a meal for my loving husband, while in severe pain, then not even wanting to eat it. Sad to say, but this is my life. I have grandchildren I can't even take care of. Sucks. On the good days I try to go outside, the doctors say, so can you get out and walk? I look at them and say, I can't even ride in the car and you want me to walk? geesh.......
Its really difficult dealing with conditions like this but I have decided that I am determined to overcome and I am looking into getting botox surgery to cure my vaginismus. I hear there is a 94% success rate. I am documenting my journey on my blog (overcomevaginismus.blogspot.com)
Thank you for creating this site. My wife and I have been dealing with this same issue for about 10 years now. We are debating the surgery you went through with Dr A and are watching your site very closely to see what your going through to help us determine if it is the right approach for us or not. I know there are several different methods that can be used for this type of surgery, is there are reason this one was chosen for you vs any of the other three?
Haven't heard from you in awhile. Hope you're doing okay.
Hi Pearl,
As okay as I ever am. I struggle with posting. Much of me wants to connect with other people WRT this mess, but some other part of me wants to isolate. I sit down to write and then wonder what to write.
Grow out of the pain, huh? Like acne, or a tendency to think one's parents are idiots?
Kate
I've had PN now for four years and even in this time I've seen thing change a little. From what the heck is that rare disease you have to "team approach". It's just frustrating for all. Dealing with an invisible and rare condition all the more commands that we try to be creative and build our own team the best we can. And so hard to do at times, like when you said you just want to isolate. But keep posting. You know, it's that thing that if you even reach one person... it's worth it. I just came across your blog and I'm glad I did. Thx
After 13 doctors and 21 perscriptions.....i moved out of my house (completely went off every Rx) and had environmental company go in and found i had black mold in my attic and in the walls. After 8 months of being out of my home, the pain completely went away. A month after the pain was gone i decided to bleach my bathroom from top to bottom, within 20 minutes the pain came flooding back. It took about a day or two then was gone. In my case it was a toxin allergy. It inflames the nerves in the vulva area and it also affected my lymph nodes in my neck and inner ears. Now anytime i enter a home i can immediately smell the musty mildew if it exists and i know i have a limited amount of time that i can be there. Hope this helps.
Anon, If it was environment, wouldn't you know about it if you went on a long vacation (e.g. after two weeks in Glacier wouldn't you notice at least a mild difference?). Did you have some sort of hint that it might be the house, was it just a guess, or were you out of the house for other reasons?
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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