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» Anyone been to see Dr.Claire Bailey in Birmingham?
Tue Aug 15, 2017 6:36 pm by Kezz

» Recently Diagnosed.... Help!
Tue Aug 15, 2017 2:57 pm by amyhp

» Vestibulectomy
Sun Aug 13, 2017 9:54 am by infinitelywondering

» Discomfort from my own liquids
Sun Aug 13, 2017 4:27 am by Hopeitworks

» Anyone else have burning on the front of thighs?
Sun Aug 13, 2017 2:20 am by Hopeitworks

» Partial Vestibulectomy
Sun Aug 13, 2017 1:38 am by infinitelywondering

» Anyone being treated by Drexel University???
Sat Aug 12, 2017 8:50 pm by Hopeitworks

» Post Vestibulectomy Pain !!!
Sat Aug 12, 2017 8:00 pm by sj17

» Pain management - what works for me
Sat Aug 12, 2017 9:58 am by sj17

Partial Vestibulectomy

Mon Jul 31, 2017 6:44 pm by JGD13

Hi all i am new here.
I had a partial vestibulectomy 21/7 for my provoked vulvodynia.
After a painful few days and feeling quite uncomfortable it seemed to get better. 1 week after i noticed some white stuff and gloopy discharge, it wasnt smelly or itchy but i got a check up at the gp surgery and the doctor said the stitches looked fine and i could just have a touch of thrush. He said this is …

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New w/ Secondary Provoked Vestibuldynia

Wed Apr 26, 2017 11:46 pm by Birdy

Hi everyone,

I'm here because I'm pretty sure I have secondary provoked vestibuldynia, even though my gyno is still "optimistic" it is not.  My problem started six months ago when I got my second UTI in as many months (after going 25 years of life without one) and then ended up with a bad yeast infection (also my first one ever) thanks to the antibiotics.  Ever since the yeast …

Comments: 3

Anyone from the PNW?

Sat Aug 05, 2017 7:54 am by jungleclover

I'm located near Portland and I would be really cool to actually meet someone with this issue. I think my roommate in college technically had this problem. She had an overgrown hymen removed and can't deal with penetration as a result. But she is gay so it seems like it hasn't been a huge problem for her (although we didn't talk about it much so there was possibly more to it than she let on). …

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Constant pain, I want to die.

Fri Jun 02, 2017 4:29 am by Meggiemay

I posted on here a few years ago but my symptoms went away with the inflammation. I didn't get so lucky this time.

For over three months, i've had terrible rawness, burning, soreness in the urethral/vestibule area and pressure/hypersensitivity in the clitoral area. I've also had some lower abdominal pressure and burning on my butt. I can barely walk! My gyno hasn't been much help. I'm on …

Comments: 22

Newbie to the site

Sun Jul 30, 2017 12:16 am by Ksa

Hello. Thank you for this wonderful site. I'm currently under the care of a dr in Phoenix that specializes in vaginal disorders. I will probably be on a suppository of estridol the rest of my life and I am currently on medications for a rare form of vaginitis that's pretty unheard of for my age. My vagina literally hates me. I've struggled with vulvadynia for 20 years, the duration of my …

Comments: 1

New to the site and just had a vestibulectomy

Fri Aug 04, 2017 12:19 am by Hopeitworks

Hello Everyone,

I have been suffering from vulvodynia for years! So I decided to go ahead and have vestibulectomy on July 28, 2017. I really wished I would of found this site before I went through with the surgery. Maybe I would have been more prepared to deal with recovering. I just need someone to talk and I dont mind hearing your story.

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Post Vestibulectomy

Thu Aug 03, 2017 6:15 pm by infinitelywondering

Heya,

I had my vestibulectomy (full) about a day and a half ago. I was very sick and poorly just after the op and experienced intense pain down there Sad

However, today I came home and have done the following things:

-washed with warm water
-applied manuka honey to the area
-ensured I wash at least 3 times a day and dab the area dry gently
-use frozen peas to stop the swelling

As of now I am …

Comments: 0

can anyone recommend a good dermatologist in LA?

Thu Jul 27, 2017 4:17 pm by saffron

Hi, I am wondering if anyone knows a vulvar dermatologist in Los Angeles? My problems seem to be external, but I'm having trouble finding a knowledgable doctor. My current dermatologist is pretty cosmetic based and I'm afraid all the products he prescribed actually made my situation so much worse!

I know there a few drs in Orange County/San Diego, but was hoping to stay local as even …

Comments: 3

Vulvodynia and IVF? Anyone done this? What does it do to the vulvadynia?

Sun Jul 30, 2017 1:03 am by Carolyn4

Hi everyone,

I have had vulvodynia since age 27--I am now 43 and it has been in pretty good remission.  I control it with acupuncture and herbs, and some cranial sacral therapy.  I have a 5 year old, had a pretty uneventful pregnancy which ended in a c-section.  My VV worsened after that, and I have worked hard to get it back under control (it took over a year to get it back into pretty good …

Comments: 0


Breaking the pain cycle

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Breaking the pain cycle

Post  Mouse on Fri Nov 19, 2010 9:56 pm

I found this post on another site which could be of interest to those of you who experience constant pain. My specialist also said that pain no matter how it presents is pain.


"My expert-doctor explained to me recently that she viewed PGAD as a chronic pain syndrome (no psychological cause in this disorder as far as she is concerned). In her opinion, arousal is just a form of lower level pain. Her treatment approach is most interesting and I would like to describe it, to see if others have used a similar way to treat their PGAD symptoms, and what success they may have had.

My doctor used an analogy to describe the problem: essentially, there is an express super-highway built from the clitoris to the brain in women with PGAD which manifests itself as persistent arousal. It is very important to get this highway dismantled to breakdown the arousal symptoms. She believes the problem needs to be treated fully from top to bottom in order to have a chance of confusing the brain, and stopping the pain signals. This is what it involves in general:

(1) For the brain - in order to stop the neuropathic pain signals appropriate medication is needed (like gabapentin, lyrica, amitryptyline, prozac depending on the patient)
(2) For the middle area (lower abdomen and low back) the brain needs to be further confused to breakdown the cycle, and nerve blocks are in order; her preference is to use lidocaine injections and blocks are done on both the sacral and pudendal nerves, essentially 4 spots to get each side. The sacral nerve is done first as it is important to go deeper to intercept the nerve signals; if the patient is comfortable pudendal blocks can be done at the same time.
(3) For the bottom, the pain signals need to be interfered with as well. The application to the whole vulva and clitoris of a 5% topical lidocaine gel after urination for 8 weeks is suggested, if it can be tolerated as some degree of pain will be involved at the beginning. If the person finds it really too painful, then stop. If this is not a good choice, then a cream with with gabapentin or amitryptyline could be applied to the area.

This is a top to bottom approach to confuse all those pain signals.

So far I have tried the first two parts of the treatment plan; even if I only had the nerve blocks a few days ago, I can tell they are confusing my pain signals. Way to go! I had practically zero pain for the first 24 hours, and now I get intermittent pain which is different in nature than before (I didn't get stabbing pains before which only lasted seconds, plus once the pain set it there was no way it would reverse in 20-30 minutes or stop if I changed body positions which is the case now). Another interesting thing is that with lidocaine blocks, there was hardly any swelling at the injection sites. Something is definitely happening and that is promising.

I asked the doctor how long I could expect the effects to last. She said the freezing lasts one hour, then the effects of the blocks can last from 2 hours to 2 weeks. Obviously, the longer the pain cycle is broken or interfered with, the more promising this type of treatment will be.

Has anyone had success with any of these elements in combination or separately? I shall await your responses."

Mouse

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Re: Breaking the pain cycle

Post  Sarah001 on Sat Nov 20, 2010 8:53 pm

I have to say I've also heard breaking the pain loop is very important, I take meds but haven't had nerve blocks at this point and can't tolerate lidocaine on the actual vulva but I think a TENS machine would also help contribute to breaking the cycle and then I believe it's a case of removing perpetuating factors like muscle spasms etc so the nerves can't slip back into old habits. Let us know how you get on.
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Re: Breaking the pain cycle

Post  Mouse on Sat Nov 20, 2010 9:21 pm

Hi Sarah,

That's a post I found on another site, it's not mine. It made a lot of sense so I thought I'd post it.

I tried a numbing cream when this started. It was horrid but I'm keen to hear if anyone has had joy with the Gabapentin and Ami creams. Are they better tolerated if they are not ingested?

I'm trying not to get too excited but I'm in a very low pain phase at the moment. It's been 3 weeks with no pain over 3/10, there's still pressure and a burning pain but nowhere near the degree I've had it in the past.

Vicki

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Re: Breaking the pain cycle

Post  Mouse on Sun Nov 21, 2010 12:38 am

This is the latest update... the person is in Canada.

Thanks for rejoicing with me, as this is a positive change in my treatment. This urogynecologist used lidocaine only for nerve blocks; she explained that lidocaine freezing lasts one hour. The purpose of the blocks was to try and break the firing of pain signals. Also, the doctor explained that her other patients had felt relief anywhere from 2 hours to 2 weeks. I felt very little pain during the procedure, and as the sacral blocks were done first, when she did the last pudendal block as there are two, it was easier than the first. She said that was because the first blocks were already working and interrupting the pain!

I liked the use of lidocaine in the nerve blocks, as no guided CT scan is needed. This doctor is a pro, she palpated the spots to be injected, and gently and skillfully inserted the needle releasing lidocaine at each stop, right from the surface of the skin to deeper levels of tissue. Lidocaine in nerve blocks made it that I had minimal swelling at the injection sites and I healed faster. Then 48 hours after the procedure, I went for a gentle swim at the pool to get my joints moving.

So far, I have had 3 good days in a row, with some short bouts of a different kind of pain (like some stabbing, or spasms in the vulva - not the usual raw burning pain from before) mixed in with some arousal; prior to the blocks, once the pain started, it would only get worse. After the blocks, the pain would go on and off by itself - it helped if I changed position. I am very pleased with this result, as I know for sure that the nerve blocks have managed to change the pain pattern.

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Re: Breaking the pain cycle

Post  jules on Mon Nov 22, 2010 4:54 am

Gabepentin gel burned my skin. i also could not tolerate the lidocaine gel either...it stung and would only last for 15 minutes after the stinging stopped. As for the nerve blocks, i had two, but they were not in the pudendal nerve, they were in the nerves lower in the spine. i had relief for six days and i don't know if there was a connection. i will be very interested to see if you get on-going relief from your block. keep us updated.

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Re: Breaking the pain cycle

Post  Mouse on Mon Nov 22, 2010 6:35 am

OOOoooiii it's not my post!!! I copied it from another support group because I thought it sounded like a great treatment plan.

No nerve blocks for me! Yet. Bummer about the creams though.

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Re: Breaking the pain cycle

Post  chester on Wed Nov 24, 2010 3:11 am

HI! I have a question, What is a TENS machine and how does it help break the pain cycle?

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Re: Breaking the pain cycle

Post  Sebby (Admin) on Sun Nov 28, 2010 11:41 am


Hey guys im waiting for a nerve block...if the general one is not so good they are going to try the pudendal block. Im not sure how long either will last on me or if they will be any good..im just waiting to see.

http://www.tensmachines.blogspot.com/ - this little article expains simply how the tens works.

I use a tse machine that is similar but is suppossed to work better. I will try that (my mum lent it to me) and also a buy a cheaper Tens to see the difference.

I do feel a difference when using it.. recently the battery went and I had to pick up a new one and have noticed more pain..(I am on my period so my pain does get worse then) so I have new battery now so will start up the treatment again

I do hope the nerve block can give me some relief..I dont exactly know how long it will last on me but at my local hosp its a day patient thing and so I would need to book whole day off work..I may need to do that if I find it helpful every few weeks and am quite afriad of having to expain that to work..My line manager is lovely so Im not worried bout that but not so sure bout the new overall boss we will be getting.

Its also something I dont want to have to explain to a man I hardly know..I mean my line manager is a women thank goodness....I may have to refer myself to occupational health just in case if I do need the regular blocks.

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Re: Breaking the pain cycle

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