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» Please tell me this can get better
Today at 2:10 am by anon99

» Acupuncture advice please
Today at 12:00 am by Bx11

» Lichen Sclerosus
Fri Feb 16, 2018 2:47 am by ryn207

Thu Feb 15, 2018 10:04 pm by infinitelywondering

» my rock bottom, psychological effects of vulvodynia, I told him he can leave me
Wed Feb 14, 2018 6:43 am by renegade_magdalena

» Some interesting information about nerve pain in general
Wed Feb 14, 2018 3:58 am by Athena

» Sore after using dilator for first time in a year
Wed Feb 14, 2018 3:45 am by Athena

» What helped me
Wed Feb 14, 2018 3:38 am by Athena

Wed Feb 14, 2018 3:33 am by Athena


Thu Feb 15, 2018 10:04 pm by infinitelywondering

Dear all,

Today has been the day I've been waiting for. The day something FINALLY makes sense.
I've been told countless times that I've got nerve damage or a muscular condition, yet none of the specific treatments have helped me. My GP suggested attacking this from a different angle so referred me to a dermatologist specialist

after having a vestibulectomy with no success, I decided to visit …

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Sat Feb 10, 2018 12:18 am by rockylife


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Newby not sure where to turn

Thu Feb 01, 2018 3:32 pm by Cerjo87

Hi this is all very new to me , well the talking about it bit is , the pain while having sex and also the uncomfortable feelings after and feeling like I have  sistitus most of the time I’m very used to , I’ve suffered for 7 years now I’m only 30 . Finally after all this time the doctors or should I say my gp has said I have Vulvodynia and have givin me gabapentin to try .i told her I’d …

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Looking for a friend..... and new problems

Sat Jan 06, 2018 11:38 pm by infinitelywondering

Hi everyone,

I hope you're doing well.

I hate to say this, but I feel beaten down and terribly alone. I had a vestibulectomy surgery about 6 months ago and I was absolutely praying it would work. It didn't.

6 months later and here I am, sitting on my bedroom floor crying my eyes out because I know I'll never be able to have painfree sex. I don't know what to do and just need a friend Sad

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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: 4

Vulvodynia from #metoo media coverage

Thu Jan 25, 2018 9:01 pm by dooleyhornberg

I am wondering if anyone else in this forum has experience an increase or flare up in their vulvodynia as a result of the coverage of the sexual abuse scandals in Hollywood, DC, and the recent gymnastics scandal. I have definitely had a flare up.

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So frustrating!!

Thu Jan 04, 2018 1:15 am by Hannah77

Well I'm back in pain after 7 years of pain free days.
I was diagnosed with vulvodynia when I was 17. I suffered for three years with horrible burning all day, painful sex with my boyfriend and just pure misery Sad I went into a spontaneous remission when I was 20. I'm still not sure how the pain stopped but all the sudden I could go an entire day without thinking of my vagina, sex started to …

Comments: 3

Looking for suggestions or encouragement

Sat Jan 13, 2018 12:10 am by ryn207

Hi there. I'm 25 and have been dealing with this for over a year and a half and I'm really starting to lose hope this will ever stop.

In July of 2016 I had a yeast infection. When Monistat didn't work I went to my gynecologist who prescribed Diflucan. When the itching didn't stop she retested me and found that my yeast infection was gone, but I now had a bacterial infection. After taking the …

Comments: 4

Amitriptyline given for vulvodyina pain

Tue Oct 24, 2017 2:46 pm by katycrawford

Hi there,

After years of being misdiagnosed etc as most women have on this forum I have finally been diagnosed with vulvodynia (yay) and have been given the lowest dose of an antidepressant called Amitriptyline. Has anyone been on this before and has any positive (or negative) news to give me? Im feeling down already and I've only been taking it for a few days, I don't have much hope of it …

Comments: 11

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."


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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.



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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.

Sebby (Admin)

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Re: Breaking the pain cycle

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