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Diagnosed recently, looking for advice

Sun Sep 02, 2018 12:51 am by Cloudberry

Hi everyone,

I'm so glad I found this forum! I was diagnosed with vulvodynia/vulvar vestibulitis (still not sure about the difference between all the different terms) a couple of months ago and I could do with some advice. This is probably going to be a lot of text because I just want to get everything off my chest, so please bear with me.

I’m a woman in my late 20s. Before getting diagnosed …

Comments: 3

Hurting, Burning, Itching, and Worn Out

Thu Aug 09, 2018 10:55 pm by donnambr

This vulvodynia that I'm currently suffering with is so cruel. I hurt, I burn, I itch. When I first got this several years ago, before the internet, I though I was the only one with this awful disorder. Doctors couldn't figure it out. I felt so alone and devastated. Somehow it disappeared for a few years and now I'm suffering again. This dreaded V misery is back and I feel like I will be with …

Comments: 5

Hi girls! New in this forum

Fri Jul 13, 2018 2:31 pm by Gaby

Hi everyone!

Also joining the V club, Here my story:

It all started last year in september with a very bad throat infection for which i had to take antibiotics for about a month. This cause several yeast infections (candidia albicans).... one after the other!. I had them every month from october 2017 till march 2018. During this period i use an incredible amount of anti-fungal creams and …

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Newbie and feeling helpless

Wed Jul 11, 2018 1:52 pm by Taylor1

Hi, I found out a few weeks ago that I have this condition, started off at the end of April as a uti took strong antibiotics then got a thrush infection and now this.. My doctor has tried me on amitriptyline and gabipentin and both made me so poorly I couldn't take it plus I have seen what long use of these drugs has done to my mom for pain and its not good. I am using coconut oil which does …

Comments: 3

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

Tue Jun 05, 2018 4:13 am 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 …

Comments: 6

From a concerned husband

Thu Jul 12, 2018 10:45 pm by ConcernedYorkieHubby

Hello everyone,

This is probably a little unconventional, but I’m a man who is here because his wife has been diagnosed with vulvodynia. The poor girl has been suffering with vulva pain for around 10 years now, and I’ve been by her side through the pain and tears and doctors misunderstandings the whole way, and we’re both exhausted and terrified by the whole experience.

I’m sure a lot …

Comments: 3

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

Fri Mar 09, 2018 6:17 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: 10

Gabapentin Gel. or other topical creams

Thu May 10, 2018 9:43 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!!)

Wed May 16, 2018 3:43 am 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 …

Comments: 0


I AM CURED!! READ THIS!!

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I AM CURED!! READ THIS!!

Post  ivyrose on Thu May 03, 2012 11:48 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 11:12 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 9:33 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 7:30 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 Fri Sep 07, 2012 1:42 am

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 6:41 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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Re: I AM CURED!! READ THIS!!

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