Vulvodynia Support
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» Hope to all my suffering ladies
6 years of "it's in your head" EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
6 years of "it's in your head" EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
6 years of "it's in your head" EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
6 years of "it's in your head" EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
6 years of "it's in your head" EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
6 years of "it's in your head" EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
6 years of "it's in your head" EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
6 years of "it's in your head" 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!
6 years of "it's in your head" 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


6 years of "it's in your head"

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Post  thanatologist Thu Jan 09, 2014 5:03 pm

Hi all!

I have been dealing with this issue for 6 years. I would go to planned parenthood and I would tell them sex was basically impossible, and they told me it was a lube problem. It was not a lube problem and I told them for 6 freaking years that was not the case.
I recently moved out of town and into a small college town where I am an undergraduate. I made an appointment with the school nurse and FINALLY on Monday, she confirmed I have vulvodynia and I was so relieved. (well, to know it wasn't just in my head!)
I have felt so alone and so crappy. I have a fiancee and we have been engaged for 2 years and together for 4. I have sex maybe once every few months with him. He is patient, loving, and caring, but I feel like an absolute failure and often wonder why he even stays with me because I am defective.
I started a regime of 2% lidocaine jelly and 10 mg of Nortriptyline. Has anyone else tried this combination? So far, that pill just knocks me out about 5 minutes after I take it.
Thank you for the support. This being such an unknown area in the medical world definitely sucks.


thanatologist

Posts : 1
Join date : 2014-01-09

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Post  mary jane Fri Jan 10, 2014 6:39 pm

hello.
it's rather infuriating to have doctors NOT listen to you and label you as "psychosomatic" (right, because chronic pain is impossible)
the amitriptyline/nortiptyline and lidocaine combo is standard therapy for vulvodynia....
I know what you mean by painful intercourse, but there is no reason to feel there is something wrong with you sexually... you have a medical condition, that is something different. If he does not understand, his problem... similarly you could have underwent surgery to leave you unable to have intercourse from the pain! these things happen unfortunately....

amitriptyline helps me, but I have pure nerve pain.... if you find the nortiptyline does not help you (you have to WAIT for it to build up in your system, it took me 2 months to get pain relief), then switch to something else....

if you are in the US, dr Fred Howard in Rochester is VERY good: https://www.urmc.rochester.edu/people/21596933-fred-m-howard
mary jane
mary jane

Posts : 345
Join date : 2013-10-05
Location : UK

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6 years of "it's in your head" Empty Vulvodynia sucks, doesn't it?

Post  Fingerscrossed Fri Jan 10, 2014 10:02 pm

I had very similar situation to you, which is a bit eerie. I went to Planned Parenthood from the time I was 18-23 (moving to Kentucky for graduate school when none were available), and could not understand why getting a pelvic exam hurt so badly. They suggested that I was unable to relax, had me do STD tests (came back negative), and had me switch pills. I went to my undergrad health center where they suggested it might be vulvodynia, but really couldn't do anything about it. They suggested I dilate and use lidocaine, but it didn't help and only made me more upset.

I finally sought help last March after dealing with this issue for six years and was officially diagnosed with provoked vulvodynia and pelvic floor dysfunction by Dr. Robert McQuady at the Pelvic Pain Regional Specialty Center in Louisville, KY. I've been on amitriptline since that time, lidocaine as needed, and also baclofen, which is a muscle relaxer. I don't know if they've actually been working or not. I tried using Lyrica, but couldn't stand the symptoms. It made me so drowsy that I nearly fell asleep driving to my appointments and in classes. My doctor is two hours away (three with a time change), so I could not do weekly physical therapy sessions until I finished my semester classes in May. I did therapy on a weekly basis from May-August and had some improvement with the pelvic floor dysfunction, but nothing with the vulvodynia. So, I underwent a vestibulectomy on December 17, 2013 and am currently still going through recovery. I just had a checkup yesterday and he said everything looks good, but I haven't been able to test out my new parts since it's only been three weeks.

Throughout this time, I have been with a wonderful man. We've been together for six years now--1 1/2 years dating, 3 1/2 years engaged, and one year married. He and I lost our virginity to one another and for a time, I was able to have pain free sex, though it took many attempts over different dates for him to be able to actually penetrate me in the first place. I've never been able to use tampons or have pain free pelvic exams. My husband does get frustrated sometimes and we essentially are in a sexless marriage because it is painful for me, but he understands and wants what is best for me. However, I hope that the vestibulectomy will work as it is supposed to it and one of my barriers to a pain free sex life will be gone. Once I get the okay, I will be continuing physical therapy and maybe the pelvic floor dysfunction will go away.


Fingerscrossed

Posts : 25
Join date : 2013-09-17
Age : 34
Location : Kentucky

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