Vulvodynia Support
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» Hope to all my suffering ladies
Sick of it EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
Sick of it EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
Sick of it EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

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

» 7 months since the diagnosis
Sick of it EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
Sick of it EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
Sick of it EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
Sick of it 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!
Sick of it 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


Sick of it

+4
raquelll
jen007
Alana3
ElleJay
8 posters

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Sick of it Empty Sick of it

Post  ElleJay Mon Feb 11, 2013 9:05 pm

Ok so I probably don't have Vulvodynia in its truest sense. But I share your symptoms and Doctors refuse to give me an exact name.

I am 26, sex has always been painful but got worse the older I got and the more fed up with it I got, its near agony now. To add to this I have had unusual discharge my whole life. Every now and then I would seek help from my Doctor but its taken this long to get anywhere. I was told once "if it looks like thrush its probably thrush"......... Finally I found a nice doctor who confirmed once more I don't have thrush, that theres no obvious cause for my discharge and it may or may not be related to the pain (there was talk of possible internal scarring). So far treatment has been focussed on controlling the discharge, it looks like im using a weekly lotion for the rest of my life. Having just had another relationship end, I really am sick of this. I am a sexual person and I want a fulfilling sexual relationship, I am entitled to one. Having read about all of you using numbing gels I really feel that's my best shot. The pain feels like its about an inch or less inside. Like my muscles wont stretch properly like they should. Of course they do but its like being stabbed with a burning sensation afterwards. I have an appointment in 2 weeks and I will demand a numbing gel. I know there's mental issues with this, I have had psychosexual therapy but I feel the best thing for me mentally is to achieve full intercourse and see myself doing that. I also saw a gynaecologist when I was 21 who did an ultrasound and confirmed everything was physically normal.
I have also bought an expensive vibrator to help me relax and stay relaxed during insertation.
I really wish I had the courage to seek and demand better help at an earlier age.

Im looking forward to reading through all your posts.

ElleJay

Posts : 1
Join date : 2013-02-11

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Post  Alana3 Mon Feb 11, 2013 9:08 pm

Do you maybe have vaginimus? That's muscles or does your skin actually hurt?

Alana3

Posts : 1093
Join date : 2012-09-25

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Post  jen007 Mon Feb 11, 2013 10:28 pm

To me, It sounds like you have vulvodynia. In my case there was no visible sign of it..I didn't have a rash or irritated skin. I was told I had a perfectly healthy looking vagina. After seeing a few doctors vulvodynia was brought up. I was diagnosed about 3 years ago with provoked vestibuledynia. I have pain only when I'm touched down there, and it's only internal pain. I also have muscle tightness that I work on with dilators daily.

My suggestion for you is to join the NVA (National Vulvodynia Association) and find a specialist in your area. This site is very helpful, I will link it below:

http://www.nva.org/

You can only search for specialists if you are a member... you have to pay a donation to join, but it's worth it if you really want to find some good help. Also you could check your local hospitals for gynecologists. At one point I had run out of options with my one specialist and I was suggested by a family member to call my local hospital. They had 2 specialists in the maternity/ gyno. area of the hospital. I was so lucky!

Keep your head up! And good luck!

-Jen

jen007

Posts : 152
Join date : 2012-11-05
Age : 31
Location : U.S.A

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Post  raquelll Wed Feb 20, 2013 7:57 am

Hey Elle,

It does sound like you have Vulvodynia...the same kind that I have! I also have the discharge, which based on all the reading I've done seems like it's called DIV (Desquamative Inflammatory Vaginitis). I have yet to really figure out what that means or what to do about that...

If you come across any info, let me know!

raquelll

Posts : 14
Join date : 2012-07-01
Age : 36
Location : USA

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Post  carby148 Wed Feb 20, 2013 11:59 pm

Sex has always been painful for me, and unless we really "work" at it, the times it's actually enjoyable for me are few and far between. Most of the time, it hurts when he's inserted in me, and I will suffer a burning pain when we're done. I often have to hold my vagina open to make it less painful, if that makes sense. I too do not feel like I'm able to open wide enough for him, even WITH lubrication. I always figured it was vaginismus, because even as a young girl I could not insert tampons. On the flip side, however, I'm able to insert a vibrator on my own without any pain if I'm masturbating, so I know a part of it has to be psychological (the pain).

Now that the doctor has diagnosed me with vulvodynia, I'm not so sure it was vaginismus the entire time, or maybe it was a combination of both.

I too have had unusual discharge since adolescence, never going a day without wearing a pantiliner just because I always have it. I was recently told to stop doing that, so I walk around with wet underwear daily. But I suppose the trade off is better -- I'd rather risk wet underwear than risk more yeast infections/pain.
carby148
carby148

Posts : 17
Join date : 2013-02-04
Age : 37
Location : East Bay Area

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Post  jen007 Fri Feb 22, 2013 2:23 am

carby148,

I totally understand how you feel. When my boyfriend and I used to have sex I couldn't even do it. Like I couldn't get him in. It was always so close to happening, but it was much too painful. I'd be left with a burning firey feeling and had to soak in a tub right away. It was awful. I recently had surgery so I no longer have that problem, but I know how it feels. I also had the discharge issue. I used to wear liners all the time, seriously it felt like I peed my pants or something. Somethings to try...change your underwear to 100% cotton if you haven't already. It's supposed to keep moisture away which causes yeast. Also try using an unscented soap like ivory soap. Some soaps can be irritating, but the ivory soap has been good to me since I've started using it. Even try using feminine wipes to keep the area extra clean.

Hope this helps!

-Jen

jen007

Posts : 152
Join date : 2012-11-05
Age : 31
Location : U.S.A

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Post  Sadgirl Mon Mar 18, 2013 7:49 pm

Ella,
I'm so sorry you are dealing with this horrible issue and can relate all too well. I empathize it's upsetting and angering at the sametime, I remember when I was first diagnosed I thought why does everyone else my age get to enjoy this? I want to, I have needs, cravings too, I want this, so why can't I do this without being in excruciating pain and lingering pain for days after? I haven't been diagnosed with vulvodynia, but I found this blog and the postings fit ALL of my issues to a T. I have been diagnosed with IC, intersestial cystitis and pelvic floor damage, however I'm and have been experiencing what you explained since my problem and diagnoses first stared. I went in several times thinking it was a yeast infection I seemed to get everytime I was intimate or tried to be but it never came up positive? My OBGYN also checked for STD's which where pretty unlikely I've only been with one person, although he has been with others in the past but still nothing. My Dr said it's so odd, it's almost like my body is acting like I'm having an allergic reaction to my husband, which I have heard can happen and you can actually be allergic to sperm however using birth control I've ruled thar out. I also am extremely careful about the lubricants I use, only a natural vagasil (like your own bodies natural moisture) and coconut oil, also we've switched to non latex condoms to try to help avoid any sensitivity I may have to any products we use. I don't know if any of this is helpful but although I have not been officially diagnosed with vulvodynia I just assumed these symptoms where part of IC and my pelvic floor dysfunction.

Sadgirl

Posts : 4
Join date : 2013-03-18

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Post  geog272 Fri Jul 05, 2013 3:19 pm

I have the horrible discharge and went through the constant assumptions by doctors that it's yeast. Turned out to be DIV (desquamative inflammatory vaginitis).

geog272

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Post  Princess-j13 Thu Jul 11, 2013 4:27 pm

I have the pain with all arousal too..I've done physical therapy, nerve blocks, and meds. My insurance doesn't cover Botox so idk what else to do. My pain is so bad that I can't work or go to school, last Sunday I was having spasms that were so bad it was like I was having a baby

Princess-j13

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