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» I think I've developed vulvodynia?? Please help!
Yesterday at 9:10 pm by Necromeowncer

» MY STORY & Vestibulectomy 2/8/17
Yesterday at 12:38 pm by Mel T

» New w/ Secondary Provoked Vestibuldynia
Sun Oct 22, 2017 3:47 am by Birdy

» Newly diagnosed
Sat Oct 21, 2017 9:50 pm by sarisbaris

» Prednisone Injections?
Wed Oct 18, 2017 5:07 am by sarisbaris

» Has anyone had continued success with gabapentin or Botox injections?
Wed Oct 18, 2017 4:47 am by sarisbaris

» Recent "Poke" Pain - So Confused/Losing My Mind
Wed Oct 18, 2017 2:37 am by sarisbaris

» What is Vulvodynia?
Tue Oct 17, 2017 11:57 pm by Jenjen

» CURED FROM VULVODYNIA - PAIN FREE FOR 2 YEARS
Mon Oct 16, 2017 2:22 am by Sagewoman

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: 4

Newly diagnosed

Tue Oct 10, 2017 8:37 pm by Brevispink

Hello everyone. I have recently been diagnosed with unprovoked vulvodynia and would really appreciate some advice and support. I have had a chronic urine infection for 16 months and was on antibiotics for 9 of those months. I have been very uncomfortable for the entire time, but now I have absolutely unbearable stinging and burning all day with itching too. The infection has just about gone, …

Comments: 9

Recent "Poke" Pain - So Confused/Losing My Mind

Thu Oct 12, 2017 9:26 am by kelseybeth23

Long Story, but I am losing my mind and getting really depressed, so if I tell the full story maybe someone can help me.

Back in August I started to get an itch down there. Normally, in the past, when this would happen, I would change the way I wore my clothes, take more baths instead of showers, and use Monistat. This time, after about two weeks of no relief, I started to get concerned. I was …

Comments: 5

Does anyone else experience this?

Sat Oct 14, 2017 5:21 pm by Angelmegs

Hi— im new here. Im incredibly desperate so if anyone has any suggestions i would greatly appreciate it. Im a 20 year old female with vulvodynia and vaginismus. I was on the birth control pill (junel fe lo estrin) from age 13-18 because of severe menstrual pain. I used the xulane patch for a few months when i was 18 but eventually stopped BC altogether because it interferes with my med for …

Comments: 0

Post Full Vestibulectomy - 5 Years Later - Please Read

Tue May 02, 2017 6:18 pm by jen007

Hi All,

It's been awhile since I've written a new topic on the forum. Wondering if any of the same ladies are still here. I've come back to update you all on my post vestibulectomy results. I can't remember if I've done an update on my current state, so forgive me if this is repeated information... I can't remember how to view my old posts! Anyway, let me get on with my update.

For 4 years post …

Comments: 4

Do you ever worry that you're making it up?

Fri May 27, 2016 6:50 am by Lucci

Hello,

I was diagnosed with Vaginismus and Vulvar Vestibulitis 10 years ago. I was 18 and scared and moving across the country for college, but luckily was able to find a doctor who specialized in 'Women's Health' who immediately put me into physical therapy. Long story short, I've been in and out of the system ever since.

A few years into treatment, I had the diagnosis of PTSD added on for …

Comments: 7

Clitoris Issues

Tue Apr 28, 2015 8:17 pm by January

I am going crazyyy trying to figure out what's wrong. Please does anyone else have an issue similar to mine? I'm only 22. So, basically when my clit is lightly rubbed, there is no feeling. However, when rubbed vigorously and directly, the burning and tingling sensations shoot down my legs and feet as if coming to the end of an orgasm but with no good feeling leading up. It's so strange. What …

Comments: 2

Cured of Vulvodynia

Wed Aug 17, 2016 1:39 am by angelique2016

I used to post on this forum a long time ago and told everyone of how I was cured of my vulvodynia by a (Melbourne Australia) female dermatologist, she put me on very low doses of Nortriptyline (Allergron) for pain management about 10mgs I believe it was, and she also had me use Advantan Fatty Ointment (not the cream) (although I saw the cream for sale on ebay from germany) so it might help, as …

Comments: 10

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: 1


HOW I CURED MY VULVODYNIA

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HOW I CURED MY VULVODYNIA

Post  ivyrose on Thu May 03, 2012 11:45 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.

ivyrose

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Re: HOW I CURED MY VULVODYNIA

Post  londonlady on Fri May 04, 2012 9:21 pm

Hi Ivy Rose,

Thanks a lot for sharing your story. it sounds hopeful!

I have also been thinking about chiropractic treatment. I was thinking about going for my lower back, because I get back ache from the way that I sit and the chair which I use at work, using a flat wooden one means I can actually sit and focus on work without too much pelvic pain, but it leaves me an achy back.

Which of the mctimmoney people did you go to see? I live in London so they are little bit far away but possibly worth a try Smile

Did your practioner tell you anything else about the kind of problems which other ladies coming to see her have had i.e. have they all had pain like yours in other places than their pelvis (which is different to mine, which is more localised)?

thanks
xxx

londonlady

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Re: HOW I CURED MY VULVODYNIA

Post  ivyrose on Thu May 17, 2012 9:38 pm

Hello, sorry I'm only just replying...
This is my chiropractor: http://www.mctimoneychiropractic.org/index.php?option=com_comprofiler&task=userProfile&user=138

As far as pain goes, I never experienced pain anywhere else but the vulval area (apart from when I had the foot spasms which disappeared when the vulvodynia started). My pain was very localised. My chiropractor has mainly cured women with unprovoked pain but she says that often these women have provoked pain as well.... the first thing to go is the unprovoked pain and then it takes a few more sessions to get rid of the provoked. With me, I never had any unprovoked pain at all. I guess every case is different. But she is a very good chiropractor and chiropractic treatment is definitely worth looking into!
Good luck!

ivyrose

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Re: HOW I CURED MY VULVODYNIA

Post  Kate1981 on Tue Sep 18, 2012 10:22 am

Hi Ivy Rose

Your story is very interesting and its amazing you have found a cure. I have took your advice and also started seeing a chiro who follows the McTimoney approach. I saw her yesterday for the first time and after analying me she said my pelvis was also massively misaligned the right side being much lower than the left. After the procedure I noticed the burning back in my vulva and shooting pains in my vagina. However today I do feel much better and the burning has gone. Fingers crossed I hope my v has been caused from this and hopefully with continued treatment will disappear like your v. How are you doing now? Are you still pain free? I really hope you doing well x

Kate1981

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I've been suffering with Vulvodynia for five years now!

Post  Gizzy on Mon Oct 01, 2012 3:07 pm

Hello,
I'm new to this website,i've been in pain for fives years and every day gets even harder it's affected my sex life and has nearly destroyed my relationship.I've finally decided that the doctors cannot help me with there drugs because they don't work and i still feel pain when taking them and they only make me feel worse.So i've decided to go drug free and i'm starting to help myself.I saw your blog and i thought wow this can actually be cured so i've made a doctors appointment and i'm going to suggest the chiropractor route and if i can't get it free on the NHS then i''l save up and pay myself!My life is more than pain so i'm taken action and hopefully this will cure me too!Is there anything you have taken naturally which will help the pain?
Thanks
Very Happy xx
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Gizzy

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Re: HOW I CURED MY VULVODYNIA

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