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» 7 months since the diagnosis
Thu Aug 16, 2018 9:09 am by Gaby

» Did going off antidepressants cause this?
Wed Aug 15, 2018 2:08 am by ryn207

» Sex after vulvodynia (husband edition)
Mon Aug 13, 2018 12:15 pm by emalita

» burning sensation and small cut? Maybe thrush?
Sun Aug 12, 2018 8:24 pm by emalita

» can v return after vestibulectomy?
Sun Aug 12, 2018 12:01 pm by Alana3

» Cleveland Clinic - Pain Management, Weston, FL
Sat Aug 11, 2018 12:37 pm by Alana3

» Hurting, Burning, Itching, and Worn Out
Fri Aug 10, 2018 7:55 pm by fairlight10

» GREATFULL FOR THIS WEBSITE
Thu Aug 09, 2018 8:37 pm by Nicola Jost

» Can you guys tell me your experiences with diflucan/Fluconazole?
Tue Aug 07, 2018 6:01 am by Guest

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: 1

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 …

Comments: 1

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

Mon Mar 12, 2018 4:33 pm 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


How I cured my Vulvodynia!

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How I cured my Vulvodynia!

Post  Millie on Wed Sep 23, 2015 3:00 pm

Hello! Smile
it's been a while since my very first post but since then I am completely cured! I honestly didn't think I would ever see the day!
I am 25 years old and suffered from provoked Vulvodynia (Vestibulodynia) for roughly 2 years. I have been pain free for 6 months. It is such an awful condition and I'm sure I am not alone when I say it can be very lonely and confusing; I was convinced I would suffer with the condition for the rest of my life. I would like to share my story in the hope that it might possibly help someone with their Vulvodynia.

After months of research I believe my Vulvodynia was initially caused by a change in my hormones. I changed my contraceptive pill from Microgynon to Mercilon because I was experiencing side effects such as nausea and vomiting. However the side effects of Mercilon were much worse; my skin and hair became very dry and I suffered from eczema on my arms and legs and also seborrheic dermatitis on my scalp, resulting in hair loss. I was more anxious and stressed and had problems with digestion and bloating. And then came the painful sex, I tried to ignore it putting it down to vaginal dryness, the pain only got worse and worse until sex was unbearable. Believing I had thrush I used a clotrimazol pessary but this had no effect on the pain whatsoever. Weeks later I noticed a patchy, red rash on my back that was itchy and dry. A doctor explained that it was a yeast rash and prescribed me with a miconazole cream, after using this for over a week, the rash had engulfed my entire back, stomach, thighs and face. I was traumatised and had no idea what to do. I saw three nurses and three doctors and all of them were baffled, I was sent away with antihistamines and a hydrocortisone cream (something I was told would initially make the rash worse) and the rash calmed down and disappeared literally over night. On top of all of this I was getting urinary tract infections on a weekly basis.

Believing all of these issues were down to the pill I stopped taking it, and noticed an amazing difference in the quality of my hair and skin, however sex was still painful so I was referred to see a Psychosexual Therapist after being told the pain was psychological. At first I thought this was a stupid idea, I felt like nobody was listening to me, I felt absolutely fine in myself, my relationship with my boyfriend was fine and I knew the pain was 100% real and not psychological. The sound of sex therapy sounded ridiculous to me... I cant even express how amazing the therapist was and how much she helped me. I had sessions with her for about 10 months. She started by taking some swabs and diagnosed me with Bacterial Vaginosis, I was given a course of antibiotics I hoped that this was the end of the pain. Unfortunately it wasn't and after trying Trimovate cream with no success she referred me to the hospital where I was properly diagnosed with Vulvodynia. Hooray! an actual name for an actual condition. I was equally gutted but equally relieved I could now find the cure! Very naive I know! The doctor told me that it was possibly nerve related and advised me to take antihistamines and use a 5% lidocaine gel before having sex. And that was it....you have Vulvodynia, now go and deal with it! I felt so hopeless! The antistamines did not help. The lidocaine gel helped but only very slightly and ideally I was looking for something to cure my Vulvodynia completely.

My therapist and I would decide on new ideas and I would go away and try them, even if I wasn't convinced it would help I tried it anyway. I was very much against the idea of taking Amitriptyline and was prepared to avoid it at all costs. I went on to have a blood test to check for a hormone imbalance and the results came back fine. I also tried;
unfragranced soaps, moisturisers and washing detergents. (helped with skin irritation and urinary tract infections)
calcium vitamins (reduced pain when urinating)
drinking more water (reduced urinary tract infects)
different positions whilst having sex (helps slightly)
Latex free condoms (no help)
Lubricants (no help)
100% Natural tampons and sanitary towels (irritation was reduced greatly in comparison to synthetic tampons).

My therapist would constantly ask me about my boyfriend, I am quite a private person and was probably hard work to begin with. I was adamant the relationship was fine but after 10 months of monthly sessions I'd gone from singing his praises to crying my eyes out at how awful the relationship actually was. I was in-denial and she could see this and gradually made me see it for myself, and I went on to end the relationship. I felt so stupid to cry but she told me something that I think is very important... keeping all my emotions and pain inside and pretending I was ok was forcing my pain to leave my body elsewhere; in the form of Vulvodynia. Quite far fetched I know but I truly believe this. I kept everything in for so long my entire body was constantly tensed up and I didn't even realize it.

And that's when I discovered the two things that changed everything.. Yoga and a book called "Heal Pelvic Pain" By Amy Stein. (Highly recommend this book!!!!!) By doing daily exercises to relieve tension and stress in my pelvic floor I slowly but surely became pain free. Its unbelievable what a few simple stretches and poses can do. Every day I would make a conscious effort to take a huge deep breath in and then exhale and totally relax my pelvic floor muscles. Something that wasn't so easy to do for someone that had constantly tensed these muscles for so long. Remembering to relax these muscles throughout the day made me realize just how much I was tensing them.. A LOT! Everything made sense now. The rashes, hair loss and bloating were all due to stress. These symptoms created more stress. The more stressed I was the more tense I became. The tension in my pelvic floor muscles made urinating painful, this in turn made me more tense. Id like to to make it clear that I was not physically tensing my muscles during sex and this is a totally different condition. But the tension in my pelvic floor as a whole was effecting the nerve endings and therefore causing pain.

With Yoga, the stretches and exercises from the book and the use of dilators I am completely pain free. And I cant stress enough how much my therapy sessions helped!! My body was trying to tell me something wasn't right and I ignored it for so long. I ended a bad relationship that I didn't even realize was bad at the time. I ate healthier, joined a gym and starting taking care of myself. Putting myself first, making sure I was happy and not stressed. I believe all of these things together were the cure for me. I know everyone's Vulvodynia is different and this might not help anyone but it also might!  

I apologize for the size of this post!! x x x

Millie

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Re: How I cured my Vulvodynia!

Post  PainBlogger on Wed Sep 23, 2015 7:10 pm

This is very encouraging. Thanks so much for posting Very Happy

PainBlogger

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Re: How I cured my Vulvodynia!

Post  mikan92 on Thu Sep 24, 2015 12:22 am

Hi!

It's good to know stretches help with the pain xD I've read the book before and tried to do the stretches for around a month, though on most days I couldn't do 2-3 sets.

Just wondering for how long did you do the stretches? Have you seen any Physiotherapist or any specialists who have commented about your tensed muscles?

mikan92

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Re: How I cured my Vulvodynia!

Post  Millie on Sun Sep 27, 2015 4:45 pm

Hi!

I only did the stretches twice a day to begin, and then went down to once a day. Even though the book says 2-3 times! There's no way that was possible for me.. I did this for a couple of months and noticed a massive difference. I don't experience pain anymore but I still do the stretches about 3-4 times a week, usually after exercise. As well as that I did yoga once or twice a week.

I never saw a specialist, I never really noticed myself... I think I had built up a lot of tension over time and didn't realise this until doing the relaxation techniques. I did a lot of research into the pelvic floor muscles and pelvic pain and it seemed to link all of my symptoms. I had really bad posture and suffered with back ache and bloating. I also had a few bladder problems, such as infections, pain when urinating, incomplete emptying of urine. All of these problems completely went after the stretches and yoga. I wasn't physically tensing my muscles whilst having sex but I feel I may have damaged the muscles with my poor posture and straining them when urinating was painful. Because I was constantly over-tensing my nerves were aggravated and I think this was causing the pain.

I hope I answered your questions! Smile i'm not very good at trying to explain this stuff!

Millie

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Re: How I cured my Vulvodynia!

Post  Katiej on Mon Nov 20, 2017 8:24 am

Hey are u still symptom free now

Katiej

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Re: How I cured my Vulvodynia!

Post  Sandra4372 on Thu Jan 18, 2018 4:37 am

I have provoked vulvodynia. I can have painfree sex now due to magnetic dilators. I like to spread the word because they are very safe and all I needed after years of pain and pointless medications.

Sandra4372

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Re: How I cured my Vulvodynia!

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