Log in

I forgot my password

Latest topics
» I don't know what to do anymore
Yesterday at 5:05 am by SinclairSassy

» Social Security Disability Benefits
Tue May 22, 2018 7:22 pm by SinclairSassy

» Cleveland Clinic - Pain Management, Weston, FL
Tue May 22, 2018 7:13 pm by SinclairSassy

» Finally found a place for me...
Mon May 21, 2018 4:08 am by mtsp

» UK Vulvodynia Clinics
Sun May 20, 2018 9:58 am by katycrawford

» 8 years and struggling
Thu May 17, 2018 11:22 pm by Kezz

» Vestibulectomy recovery question!
Thu May 17, 2018 11:11 pm by Kezz

» Gabapentin Gel. or other topical creams
Thu May 17, 2018 11:55 am by Rosie21

» What has been helping ME (much less pain over time!!)
Wed May 16, 2018 3:43 am by leoscc

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

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: 5

Condoms Less Painful?

Mon May 07, 2018 3:35 am 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?

Fri Apr 27, 2018 12:06 am 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 11:46 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 :)

Sat Jan 08, 2011 1:08 am 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

Somebody please help me...

Fri Nov 24, 2017 8:05 am by Andlag

Hey everyone,

since I started being sexually active i often experienced burning in my vagina which was often worse during sex /around the time of my period or when using lubricants. I was never able to use tampons because the one time i tried putting them in it felt like acid was poured on my skin. Fast forward to 2 months ago when I got a UTI and an allergic reaction in my vagina. I thought it …

Comments: 14


How I cured my Vulvodynia!

Go down

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

Posts : 4
Join date : 2015-01-15

View user profile

Back to top Go down

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

Posts : 219
Join date : 2015-07-27

View user profile

Back to top Go down

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

Posts : 36
Join date : 2015-04-22

View user profile

Back to top Go down

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

Posts : 4
Join date : 2015-01-15

View user profile

Back to top Go down

Re: How I cured my Vulvodynia!

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

Hey are u still symptom free now

Katiej

Posts : 19
Join date : 2017-11-14

View user profile

Back to top Go down

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

Posts : 9
Join date : 2016-09-14

View user profile

Back to top Go down

Re: How I cured my Vulvodynia!

Post  Sponsored content


Sponsored content


Back to top Go down

Back to top


 
Permissions in this forum:
You cannot reply to topics in this forum