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» Lichen Sclerosus
Yesterday at 2:47 am by ryn207

» MAY HAVE FOUND A CURE- PLEASE READ
Thu Feb 15, 2018 10:04 pm by infinitelywondering

» my rock bottom, psychological effects of vulvodynia, I told him he can leave me
Wed Feb 14, 2018 6:43 am by renegade_magdalena

» Some interesting information about nerve pain in general
Wed Feb 14, 2018 3:58 am by Athena

» Sore after using dilator for first time in a year
Wed Feb 14, 2018 3:45 am by Athena

» What helped me
Wed Feb 14, 2018 3:38 am by Athena

» NO PAIN DURING SEX
Wed Feb 14, 2018 3:33 am by Athena

» Coping with Vulvodynia
Tue Feb 13, 2018 3:55 pm by NaughtyNanny

» Newby not sure where to turn
Tue Feb 13, 2018 2:10 pm by sarisbaris

MAY HAVE FOUND A CURE- PLEASE READ

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 …

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NO PAIN DURING SEX

Sat Feb 10, 2018 12:18 am by rockylife

I HAVE NO PAIN DURING SEX, BUT I FEEL THIS BURNING SENSATION ALL DAY JUST BESIDE THE VAGINAL OPENING. DO I REALLY HAVE A VULVODYNIA? I'M CONFUSED.

Comments: 2

Newby not sure where to turn

Thu Feb 01, 2018 3:32 pm by Cerjo87

Hi this is all very new to me , well the talking about it bit is , the pain while having sex and also the uncomfortable feelings after and feeling like I have  sistitus most of the time I’m very used to , I’ve suffered for 7 years now I’m only 30 . Finally after all this time the doctors or should I say my gp has said I have Vulvodynia and have givin me gabapentin to try .i told her I’d …

Comments: 4

Looking for a friend..... and new problems

Sat Jan 06, 2018 11:38 pm by infinitelywondering

Hi everyone,

I hope you're doing well.

I hate to say this, but I feel beaten down and terribly alone. I had a vestibulectomy surgery about 6 months ago and I was absolutely praying it would work. It didn't.

6 months later and here I am, sitting on my bedroom floor crying my eyes out because I know I'll never be able to have painfree sex. I don't know what to do and just need a friend Sad



Comments: 8

Newbie to the site

Sun Jul 30, 2017 12:16 am by Ksa

Hello. Thank you for this wonderful site. I'm currently under the care of a dr in Phoenix that specializes in vaginal disorders. I will probably be on a suppository of estridol the rest of my life and I am currently on medications for a rare form of vaginitis that's pretty unheard of for my age. My vagina literally hates me. I've struggled with vulvadynia for 20 years, the duration of my …

Comments: 4

Vulvodynia from #metoo media coverage

Thu Jan 25, 2018 9:01 pm by dooleyhornberg

I am wondering if anyone else in this forum has experience an increase or flare up in their vulvodynia as a result of the coverage of the sexual abuse scandals in Hollywood, DC, and the recent gymnastics scandal. I have definitely had a flare up.

Comments: 0

So frustrating!!

Thu Jan 04, 2018 1:15 am by Hannah77

Well I'm back in pain after 7 years of pain free days.
I was diagnosed with vulvodynia when I was 17. I suffered for three years with horrible burning all day, painful sex with my boyfriend and just pure misery Sad I went into a spontaneous remission when I was 20. I'm still not sure how the pain stopped but all the sudden I could go an entire day without thinking of my vagina, sex started to …

Comments: 3

Looking for suggestions or encouragement

Sat Jan 13, 2018 12:10 am by ryn207

Hi there. I'm 25 and have been dealing with this for over a year and a half and I'm really starting to lose hope this will ever stop.

In July of 2016 I had a yeast infection. When Monistat didn't work I went to my gynecologist who prescribed Diflucan. When the itching didn't stop she retested me and found that my yeast infection was gone, but I now had a bacterial infection. After taking the …

Comments: 4

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: 11


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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