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» How I cured my Vulvodynia!
How I cured my Vulvodynia! EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
How I cured my Vulvodynia! EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
How I cured my Vulvodynia! EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
How I cured my Vulvodynia! EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
How I cured my Vulvodynia! EmptySat Jun 15, 2019 5:07 pm by mary jane

» 6 days post Vestibulectomy - Is this normal?? please tell me about your postop healing process!
How I cured my Vulvodynia! EmptyTue Jun 11, 2019 12:56 am by VVSSufferer

» Vestibulectomy next week in London!! - questions!!
How I cured my Vulvodynia! EmptyWed Apr 24, 2019 8:32 pm by HedvigB

» Dating with Vulvodynia and Vaginismus advice
How I cured my Vulvodynia! EmptyFri Apr 19, 2019 10:25 pm by Tartufo

» Research Participants Needed!
How I cured my Vulvodynia! EmptyThu Apr 11, 2019 2:09 pm by PelvicPainProject

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: 2

Putnams 'bony parts' cushion or Putnams 'Dr Huff' cushion - which is best?

Sat Aug 01, 2015 4:17 pm by Fielder

Hi everyone,

I'm a newbie.  I live in the UK.  

I'm trying to work out the best cushion to get for my vulvodynia.  I suspect that I could have pudendal nerve involvement (the aching and burning pain is from vagina to clitoris) and I have rectocele and some tailbone pain too.

I have seen some good reports on older threads regarding the Putnams pressure relief cushions....with some ladies …

Comments: 11

An absolute success story- please read!

Fri Mar 08, 2019 10:57 pm by Persevere1990

Dear All,

I posted on here back in March 2017 having just got a diagnosis of vulvodynia after a few months of relentless and acute pain. I was desperate, I was hurting, I was scared I would never know life without pain there again.

I tried creams, acupuncture, numbing gels, frozen pads, baths with various internet recommended concoctions- convinced myself I had lichen sclerosus, herpes, thrush- …

Comments: 0

I'm sorry im rambling

Thu Feb 21, 2019 5:49 am by Jet227

hey, im 19, ive been struggling with this almost a year. The first week I became itchy I went in to check about a yeast infection another week later. I have been to 10 different doctors a total of about 15 appointments for this problem for the past 11 months. I have been tested for everything including having a biopsy. I was first told basically to just go home and use hydrocortazone, then I went …

Comments: 1

New member need advice please

Thu Feb 28, 2019 11:33 pm by PANDORA123

Hello, I have just been diagnosed with unprovoked vulvodynia. Im really scared and worried. It burns a lot and it hurts to sit down. I have been prescribed amitriptyle 10mg. Can anyone give me some hope that I can get better from this condition. Feeling low and depressed.

Thanks

Comments: 5

MonaLisa Touch

Fri Feb 08, 2019 7:35 pm by rl2091

Hi All,

I'm wondering if anyone has any experience with the MonaLisa Touch treatment for Vulvodynia? My pain started when I went on HRT(pill) for anxiety mainly and my pain abruntly stopped when I stopped HRT. However, when I started on the HRT patch (at my dr's suggestion), the pain returned and has never left. That was 7 years ago. I found MonaLisa Touch on the internet purely by accident …

Comments: 3

Diagnosed Recently

Tue Jan 08, 2019 3:55 pm by flissyg

Hi All,

I’m so glad I’ve found a place where there are others who understand how I feel!

So this is my story:-

I’m 36,  and 4 months ago, whilst innocently sitting in bed reading I experienced a very sharp stabbing pain in my clitoris. It last only a few minutes and then subsided as quickly as it came on. It put it down to “one of those things”.  The following morning I woke up …

Comments: 4

New and need advice and help

Wed Dec 05, 2018 3:26 pm by Cin124

Hi everyone,

About three months ago, I started having vaginal and vulval itching. Then, about two months ago, my vulva started to feel painful and look swollen, so I went to the doctor. I was tested for herpes, chlamydia, and gonorrhea which all came back negative. I also had to do a vaginal swab test and the only thing that came back positive was yeast infection. I was prescribed hydrozole …

Comments: 6

New here would very much appreciate advice at the end of my rope

Wed Jan 09, 2019 9:09 pm by Jma990o

This might be a little long but it's been such a long time I've even been able to talk about my problems openly thank you in advance for any helpful advice.
So ok I'm 24 I've been having this problem for over two years seen quite a few doctors and obgyns alike and nobody will take me seriously I have had a few utis and yeast infections and even bv once and this all started after one of the utis …

Comments: 3


How I cured my Vulvodynia!

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How I cured my Vulvodynia! Empty 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 : 5
Join date : 2015-01-15

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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

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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

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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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Join date : 2015-01-15

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

Hey are u still symptom free now

Katiej

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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

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Post  Millie on Sat Dec 07, 2019 11:54 am

Hi Katiej,

I am very sorry for such a ridiculously late reply, I no longer use this forum and it wasn't until clearing out an old email address that I stumbled across your response.
However, I know that the symptoms of Vulvodynia can last for years and wanted to reply just in case it could help anyone. I have been completely pain free since I wrote my initial post. I still strongly believe that my body was telling me that something was wrong (mentally and physically) and that I needed to take better care of myself and put myself and my emotions first.

Again, sorry for not replying two years ago! Sad

Millie

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Join date : 2015-01-15

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