Vulvodynia Support
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» Hope to all my suffering ladies
New here/Advice about life with vulvodynia EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
New here/Advice about life with vulvodynia EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
New here/Advice about life with vulvodynia EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
New here/Advice about life with vulvodynia EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
New here/Advice about life with vulvodynia EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
New here/Advice about life with vulvodynia EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
New here/Advice about life with vulvodynia EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
New here/Advice about life with 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!
New here/Advice about life with vulvodynia EmptyTue Jun 11, 2019 12:56 am by VVSSufferer

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


New here/Advice about life with vulvodynia

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Post  blueberryrabbit Mon Sep 08, 2014 3:06 pm

I haven't been on a website forum in years, but this is probably the only way I can really talk about this.

I'm 23, and I've had vulvodynia/vestibular pain/pelvic floor dysfunction since I was 15 (I've probably had it for much longer than that and don't really remember). I also have PTSD from being in a sexually and emotionally violent relationship for 5 years. I can have sex, but not without pain, and having flashbacks/panic attacks after awhile. I have moments where I can't walk, or really think about anything other than my pain. Bike riding, sitting in really uncomfortable chairs, or anything that requires a lot of pressure on my pelvic muscles is impossible.

I can't afford to go to a physical therapist (who can only be seen once every 6 months anyways- my insurance is funny like that), and medications such as Gabapentin make me sick. So all I can really do is find strategies to deal with my pain. I squat when I pee to prevent anything touching down there, and I try not to wear pants/underwear that prevents me from "breathing down there", haha. Ice directly on my vestibule helps when I'm in pain, but I feel embarrassed bringing ice with me to the bathroom when I'm not home.

I'm frustrated that I have to live with a pain condition, but the most I can do is try to accept it. I'm extremely worried that I'll never be in a relationship with someone who understands the physical and emotional intensity that I deal with. I've tried to explain my condition to other women, especially those of my friends who are "sex advocates", but they don't really understand that it exists anyways. I feel completely alone, and I don't want to acknowledge my sexuality, because I've given up ever really having one without excruciating in mental and physical pain.

Smile I appreciate you reading this and I'm hoping you all find peace and healing.

blueberryrabbit

Posts : 1
Join date : 2014-09-08

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Post  RoseKa Mon Sep 08, 2014 6:57 pm

Hi blueberryrabbit

Im sorry to hear what you are going through and while so young sweety! I hope you will get a lot of support and understanding from the members here. I know that this condition is a living hell at its worst, ive been there for a long time... im now on a journey to heal it one day at a time without medications then i found the other thread on here called "Pain Free With Dr Robert Morse" and have since been helped a lot for free on that thread by a generous and wise young man who has answered all my questions so far and steered me in the right direction. Im now in much less pain, i can put warm water on the vulvar without the pain increasing (it used to make it burn and sting so badly i would go into a fetal position and cry). Other benefits are that i sleep better at night and my high blood pressure is almost within a healthy range.... Me and my hubby think that if it continues to get better at this rate we might be able to have sex again soon, after a long time without it because i eventually couldnt stand the pain it caused

It is so sad to me that someone so young has to deal with this. I hope you can maybe read that whole thread. Maybe it will help. I dont think we have to live with this if we dont want to and choose to really do something about it... So far my experience is that we just have to do what it takes to help the body heal it and have patience while it takes care of the rest https://vulvodyniasupport.forumotion.net/t622-pain-free-with-dr-robert-morse

RoseKa

Posts : 33
Join date : 2014-08-15
Age : 44

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Post  sailor_moon Mon Sep 15, 2014 11:41 am

Oh you poor poor thing. I so feel for you.

I am only a couple of years older than you. I know how hard it is being a young person with this nightmare of a condition.

Can I ask what type of symptoms you experience? And do you have any other symptoms besides vulvodynia and your mental state?

I have only just gotten onto a great doctor after a year and a half...and after 12 other doctors telling me it was all in my head and needed antidepressants. It turns out I have an EXTREMELY rare hormone imbalance, one that goes undetected unless you pay to get a special blood test done. I am in the midst of other tests to put the pieces of the puzzle together so I can't say I'm cured yet, but its a great start after a year and a half, and $8000 down the drain on treatment that hasn't worked.

Have you seen a Gynecologist that specialises in vulva disorders?


Don't give up. Sad no one should have to live with this.

sailor_moon
sailor_moon

Posts : 222
Join date : 2014-07-06
Location : Australia

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