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Newly diagnosed

Tue Oct 10, 2017 8:37 pm by Brevispink

Hello everyone. I have recently been diagnosed with unprovoked vulvodynia and would really appreciate some advice and support. I have had a chronic urine infection for 16 months and was on antibiotics for 9 of those months. I have been very uncomfortable for the entire time, but now I have absolutely unbearable stinging and burning all day with itching too. The infection has just about gone, …

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Recent "Poke" Pain - So Confused/Losing My Mind

Thu Oct 12, 2017 9:26 am by kelseybeth23

Long Story, but I am losing my mind and getting really depressed, so if I tell the full story maybe someone can help me.

Back in August I started to get an itch down there. Normally, in the past, when this would happen, I would change the way I wore my clothes, take more baths instead of showers, and use Monistat. This time, after about two weeks of no relief, I started to get concerned. I was …

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Does anyone else experience this?

Sat Oct 14, 2017 5:21 pm by Angelmegs

Hi— im new here. Im incredibly desperate so if anyone has any suggestions i would greatly appreciate it. Im a 20 year old female with vulvodynia and vaginismus. I was on the birth control pill (junel fe lo estrin) from age 13-18 because of severe menstrual pain. I used the xulane patch for a few months when i was 18 but eventually stopped BC altogether because it interferes with my med for …

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Post Full Vestibulectomy - 5 Years Later - Please Read

Tue May 02, 2017 6:18 pm by jen007

Hi All,

It's been awhile since I've written a new topic on the forum. Wondering if any of the same ladies are still here. I've come back to update you all on my post vestibulectomy results. I can't remember if I've done an update on my current state, so forgive me if this is repeated information... I can't remember how to view my old posts! Anyway, let me get on with my update.

For 4 years post …

Comments: 4

Do you ever worry that you're making it up?

Fri May 27, 2016 6:50 am by Lucci

Hello,

I was diagnosed with Vaginismus and Vulvar Vestibulitis 10 years ago. I was 18 and scared and moving across the country for college, but luckily was able to find a doctor who specialized in 'Women's Health' who immediately put me into physical therapy. Long story short, I've been in and out of the system ever since.

A few years into treatment, I had the diagnosis of PTSD added on for …

Comments: 7

Clitoris Issues

Tue Apr 28, 2015 8:17 pm by January

I am going crazyyy trying to figure out what's wrong. Please does anyone else have an issue similar to mine? I'm only 22. So, basically when my clit is lightly rubbed, there is no feeling. However, when rubbed vigorously and directly, the burning and tingling sensations shoot down my legs and feet as if coming to the end of an orgasm but with no good feeling leading up. It's so strange. What …

Comments: 2

Cured of Vulvodynia

Wed Aug 17, 2016 1:39 am by angelique2016

I used to post on this forum a long time ago and told everyone of how I was cured of my vulvodynia by a (Melbourne Australia) female dermatologist, she put me on very low doses of Nortriptyline (Allergron) for pain management about 10mgs I believe it was, and she also had me use Advantan Fatty Ointment (not the cream) (although I saw the cream for sale on ebay from germany) so it might help, as …

Comments: 10

Vulvodynia and IVF? Anyone done this? What does it do to the vulvadynia?

Sun Jul 30, 2017 1:03 am by Carolyn4

Hi everyone,

I have had vulvodynia since age 27--I am now 43 and it has been in pretty good remission.  I control it with acupuncture and herbs, and some cranial sacral therapy.  I have a 5 year old, had a pretty uneventful pregnancy which ended in a c-section.  My VV worsened after that, and I have worked hard to get it back under control (it took over a year to get it back into pretty good …

Comments: 1

Partial Vestibulectomy

Mon Jul 31, 2017 6:44 pm by JGD13

Hi all i am new here.
I had a partial vestibulectomy 21/7 for my provoked vulvodynia.
After a painful few days and feeling quite uncomfortable it seemed to get better. 1 week after i noticed some white stuff and gloopy discharge, it wasnt smelly or itchy but i got a check up at the gp surgery and the doctor said the stitches looked fine and i could just have a touch of thrush. He said this is …

Comments: 6


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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