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I'm new to this forum and would love some advice! :)

Mon Jun 04, 2018 11:13 pm by anikita

Hi lovely gals!

I'm honestly hoping to get any bit of advice anyone might have to offer. I go from bouts of sobbing hysterically in my boyfriend's arms to feeling confident that I can beat this.

I haven't been actually diagnosed with vulvodynia but EVERYTHING under the sun has come back negative. I started having sex 4 years ago after starting Lo Loestrin, with my first and current boyfriend …

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

Fri Mar 09, 2018 12:17 pm by Tunes25

Hello!

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 …

Comments: 8

Gabapentin Gel. or other topical creams

Thu May 10, 2018 4:43 am by Rosie21

Hi I have been suffering for some years with this abominable pain. I have tried most of the systemic drugs , I asked specialists and Doctors if I could at least try a topical treatment but because this requires a special prescription have been refused Has anybody had a chance of trying these? Thank you I will try to put a link on to some of the research into Gabapentin Gel. Thanks.

Comments: 1

What has been helping ME (much less pain over time!!)

Tue May 15, 2018 10:43 pm by leoscc

Hello everyone! I vanished for quite some time as my life became consumed by not only this but other daily responsibilities as well. Shortly after my diagnosis, my boyfriend f 3 years left me as he did not want to deal with this. It left me broken for a while but also gave me time to figure out what the heck was going on. So, I will write out a quick list of my symptoms and what helped me.

1. I …

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

Mon Mar 12, 2018 11:33 am by totallycured

Hi,

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: 4

Condoms Less Painful?

Sun May 06, 2018 10:35 pm by stillinpain

I'm just curious, has anyone found using condoms to be less abrasive to the skin than without? I just got off birth control and haven't stretched myself out enough post surgery to try sex yet, but when I do I am wondering how trying it with condoms with affect the sensation. I feel like for me the skin to skin sensation creates pain, not just at my entrance but internally, too, since I also have …

Comments: 0

Will there be an end?

Thu Apr 26, 2018 7:06 pm by Krista2828

I go in and out of being okay and not being okay with this condition. I question often why me? I am a problem solver by nature and I feel so defeated that after tons of research and trial and error and doctors and tears that there still is no answer.

I am in my 20's.. it shouldn't be this way.

Id love to know what all has worked! I am willing to try anything to get my life back. I am curious …

Comments: 6

you can be healed so easy and quite fast.

Thu Apr 26, 2018 6:46 pm by pussycat

Hello everyone,
i am new to this forum. I wanted to share my personal "journey" with V with you and to give you a real hope you can be totally healed/recovered from V. Many years ago i was struck with V, it was painful and got worst and worst, eventually i could not sit, could not stand, could not walk, could not swim in a swimming pool anymore. I was becoming bedridden, it frightened …

Comments: 4

Hi Im from Australia :)

Fri Jan 07, 2011 7:08 pm by emma

Hi girls... I live in Australia.
I am currently undergoing a new treatment for vulvodynia. Just wondering if anyone else here has tried it. It's Endep in the form of cream to apply directly on the area. I dont know if anyone else has tried this but so far evidently it has had a 50% success rate.
Anyway i feel at a loss. This new treatment is exciting but at the same time i just dont feel like …

Comments: 35


I AM CURED!! READ THIS!!

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I AM CURED!! READ THIS!!

Post  ivyrose on Thu May 03, 2012 6:48 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: I AM CURED!! READ THIS!!

Post  ButterflyLiz on Fri May 04, 2012 6:12 am

ivyrose that's amazing. I could not be happier for you. Thank you for sharing your story! Can I ask which clinic you visited? I was looking at this at one point (also found out about it through the VPS) but the nearest one to me is miles away and I wasn't convinced it would help anyway. But I guess it may be worth a shot! Liz x
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Re: I AM CURED!! READ THIS!!

Post  ivyrose on Thu May 17, 2012 4:33 pm

Sorry I took so long replying! My chiropractor is
http://www.mctimoneychiropractic.org/index.php?option=com_comprofiler&task=userProfile&user=138
It's definitely worth a try. Best of luck!

ivyrose

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Re: I AM CURED!! READ THIS!!

Post  Chelsea1991 on Fri May 25, 2012 2:30 am

I was wondering was this done by the NHS or privately if you dont mind me asking

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Re: I AM CURED!! READ THIS!!

Post  ivyrose on Thu Sep 06, 2012 8:42 pm

unfortunately i am having to pay for the chiropractor and it isnt cheap but has helped enormously. i am however working at trying to get an appointment with one of the leading pudendal neurologists on the nhs to find out what exactly is going on with my lower back!

ivyrose

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Re: I AM CURED!! READ THIS!!

Post  Kate1981 on Fri Sep 07, 2012 1:41 pm

Hi Ivyrose

I am really interested in ypur story. I have recently been diagnosed with vulvodynia and I am willing to try anything. I often have lower back pain and suffer with restless legs I just wonder if this could be connected. I have had a look at the chirpractor website all seem far from me but im willing to go if it will help. Can I ask how much each session cost? I have private health care but I dont think they will cover the cost. How are you now? Is your pain still gone? Im hoping you've found a cure for many suffers.

Kate1981

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