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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 …

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I'M NEW - Do I listen to my gyno who I feel has it wrong?

Fri Mar 09, 2018 6:17 pm by Tunes25


I am a 25 year old woman and wanted to share my story here as I feel frustrated by the suggestions of my gyno and am hoping for some advice.

To give the context for this: in September 2016 I moved in with my long term boyfriend after living abroad a year and (nearly) abstaining from sex. Within a few weeks I had got a yeast infection which I treated myself successfully, but then 2 weeks …

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I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone

Mon Mar 12, 2018 4:33 pm by totallycured


Every so often I'm reminded of the constant, persistent, horrible pain I was in two decades ago, and I reach out to try to help others who are suffering. If someone had offered me a solution during that terrible time, I'd have jumped at it. I hope this helps someone.

Yes, I did have terrible vulvodynia. It felt like someone poured acid all over my vulva. My doctor confirmed it and was …

Comments: 1

Recently Diagnosed which has motivated my research study

Tue Mar 06, 2018 4:54 pm by ebclose2free

Hi everyone,

My name is Eliza Barach and I was diagnosed with vulvodynia in October of 2017. I'm also PhD student at the State University of New York at Albany. I work several professors at SUNY, but one in particular, Dr. Mitch Earleywine researches marijuana and its possible efficacy as an alternative treatment. Our previous examined cannabis and symptoms of PMS/PMDD and found that women …

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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 …

Comments: 3

New and desperate for advice

Sat Mar 03, 2018 2:37 pm by srbry

Hi everyone,

I'm new here and was told to find a support group because this is all getting a bit much really...

I lost my virginity when I was 18 and it hurt - that was normal. Loads of women had told me that it hurt so that was fine I didn't question that. I was with the same guy for a couple of months and each time after that it was uncomfortable and not great. I didn't tell him because I …

Comments: 3

New and need some help

Wed Feb 21, 2018 4:30 pm by LindafromNJ

New to this site ad trying to figure out how it works.  I am trying to post as a new member so I am hoping this goes thru.  I am a senior adult and have just been diagnosed by the Drexil Vaginitis Center to have vulvodynia along with Vestibulitis (not sure if spelled correctly).  My symptoms are vaginal burning, itching, soreness around the vaginal opening with one spot in particular.  Some …

Comments: 9

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: 12

Can A Cut In Vestibule cause Vulvodynia?

Thu Mar 01, 2018 1:07 am by rockylife

Can a cut in the vestibule area cause vulvodynia? Is it possible that some nerve a were damaged that’s why I feel this pain in my area without visible lesions?

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Post  ivyrose on Thu May 03, 2012 11:43 pm

Hello. Please read this, I want to help as many women as possible. One thing I have learned over the last 3 yrs suffering from this condition is NOT TO ACCEPT EVERYTHING YOUR DR TELLS YOU.

I posted on here a while ago claiming that I had experienced a large decrease in my provoked pain due to taking baking soda baths. Since then the pain came back with vengeance and I realised I was wrong. The depression hit again. Suddenly, a light bulb went on in my head - I had been bedridden the whole week of my miraculous 'cure' due to having the flu. I started to wonder whether my pain was something to do with my back, as it seemed to decrease to the point of almost disappearing completely when I was lying flat for a long period of time. Then, I remembered something else. Just before the onset of my pain, I had experienced a strange spasming and pain down the left side of my back, left leg, foot and toe. This pain and spasming was on and off and had been going on about 2 months previous but I never saw a doctor about it. Embarrassingly, the pain came to a head one time in the middle of sex when my toe started spasming and then shot out at a right angle, causing excruciating pain to run up and down the inside of my left leg. It was the time I had sex after this that my vulvodynia had started, at first only in the left hand side (then it eventually spread to all over the vulva). But I had completely shrugged this toe thing off until now, not connecting it with the vulvodynia. That's why I never mentioned it before. (also, its a bit embarrassing so I didn't really tell anybody!)

I asked a doctor who was experienced in vulvodynia about whether my problem could stem from these foot spasms, and he shot down the idea before I had even finished explaining it to him and put me on amitriptyline. Didn't even test my blood pressure or anything first. This is a Dr who claims to have been 'treating' women with vul. for 40 yrs, but who admits he has not ever found a definitive cure for any of his patients. Basically when I saw him (feeling completely miserable with and deserted by my body aged 18) he told me that it would be likely I would suffer from the condition my whole life. He didn't exatly sugar coat it and when I left the hospital I burst into tears. I decided I needed to take matters into my own hands.

Through the Vulval Pain Society I heard about a chiropractic group called the McTimoney Group based in the UK, who are carrying out research on whether back problems can cause vulvodynia. I contacted the group and booked an appointment.

My chiropractor identified that my pelvis was incredibly misaligned - the left side more than a centimetre higher than the right. The symptoms such as the spasming and shooting pain I described led her to believe that I had a trapped nerve somewhere in my back, probably caused by this twisted pelvis. When I started the chiropractic treatment, I came off the amitriptyline first to make absolutely sure that it wasn't just the drugs that were dulling my provoked pain. The first few sessions left me in incredible pain afterwards. The spasming that had mysteriously disappeared after the onset of the vulvodynia came back. I tried sex during this time and was forced to discontinue, it was so painful. I was sceptical of the treatment at first and it is certainly pricey.

However, after about seven sessions (a session a week) with the chiropractor sorting out my back and pelvis my pain has gone from about 9/10 to 0.5. It has pretty much disappeared completely and my chiropractor is now certain my vulvodynia was caused by a trapped nerve. She has completely straightened my pelvis and I have responded very well to the treatment. Everything is in the right place now! I will have to visit her intermittently throughout my life to make sure the pain stays away and my back / pelvis doesn't slip back to the way it was, but we are both optimistic that in a few more sessions my pain will have disappeared completely. I am over the moon.

I am now living my life the way I have wanted to for so long. I have a new boyfriend and painful sex is no longer an issue. It feels like a miracle. Manipulation from a chiropractor is all it has taken for me to go from feeling like hot pokers were on my skin during all sexual contact to no pain. I am so happy and relieved, but in a way I also feel quite guilty that I have found a cure when so many women out there are still suffering from this terrible affliction. PLEASE, even if you think it unlikely to be the cause of your pain, go see a chiropractor. It might be the best thing you ever do. The money is worth it, and at the McTimoney practice all patients' case studies will (anonymously) support their research, so you are doing your bit for other women with the condition!

I have an appointment to see my Dr in a few weeks to see 'how the amitriptyline is progressing'. I'm going to give him a piece of my mind. I think that many of the problems with this illness is Drs only want to treat the symptoms and not find the cause. In my opinion this is negligence. Tricyllic antidepressants are not pretty. The ami made me pile on weight and act a bit like a vegetable. Over 2 months after stopping it I am still suffering from terrible insomnia. It is not worth it when there are other methods to actually CURE vulvodynia.

I hope this helps. If anyone would like more information about the McTimoney Group and which particular chiropractor I visit please contact me, I am happy to help.

Good luck!!

PS: I would also like to add that my chiropractor has 2 more success stories where the vulvodynia has completely gone away for her patients. It certainly is very promising.


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McTimoney chiropractor

Post  kimvel on Thu Aug 02, 2012 5:21 pm

I have just read your post and was wondering who your chiropractor is? I am based in London and read that the McTimoney Chiropractors who are doing research into Vulvodynia are all based outside London. Do you think I could go to any McTimoney chiropractor? There are some in London.


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Re: McTimoney chiropractic treatment

Post  Sunflower82 on Thu Aug 02, 2012 8:38 pm

I live near London (purley) and I have just started seeing one of the McTimoney chiropractors, I am travelling to Worthing. I am under the impression at these stage it is only the chiropractors who are listed on the vulvar pain society website. So at present there is no one in the London area, I think this is due to the nature of the area that is being looked at, in particularly the pelvis area.

Hope this helps


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Post  Dominogirl on Thu Aug 29, 2013 7:44 pm

Hi there, I'm looking for an Mctimoney therapist around the Oxford area? Could anyone help me please?

Thanks Smile



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