Vulvodynia Support
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» Hope to all my suffering ladies
Looking for answers EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
Looking for answers EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
Looking for answers EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

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

» 7 months since the diagnosis
Looking for answers EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
Looking for answers EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
Looking for answers EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
Looking for answers 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!
Looking for answers 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


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Post  alessandria Sat Dec 07, 2013 6:09 pm

Hello all! I've been lurking on this website for a while, and was hoping to see if anyone else has a similar story to mine. I had always been a very sexually healthy person in the past, and was the type to want sex multiple times a day if I had the time for it. I never even had cramps or an unmanageable period, a UTI, a yeast infection, anything even slightly amiss until about two years ago. It was then that I got what I assumed at the time was my first yeast infection. My normally translucent discharge had become thick and white, and I was terribly swollen throughout my labia, vagina, and clitoris. I emailed my doctor, who was certain that it was yeast when presented when my list of symptoms. When the Monistat did nothing, I scheduled an appointment with her -- while she thought my discharge surely looked like yeast, the culture came out totally negative. All STD checks were clear, every single test came back negative. They recommended at that time that I switch to all-cotton underwear, loose-fitting clothes, change my laundry detergent, and a thousand other things that just didn't help. I kept trying to have sex for a while, but it was so excruciatingly painful that sometimes I even bled afterwards from how raw and irritated my skin had become. My discharge remained strangely altered, to the point that all 5 doctors were initially certain I had a yeast problem on exam, but no culture ever came up positive for yeast. When I was diagnosed with V originally, I was in denial and desperately hoped that the doctor was somehow wrong. The way she portrayed it was that I was, at 23 years old, going to have to deal with the fact that I was never going to enjoy sex again. I found it too devastating to deal with, and stopped going to the doctor for about six months' time. I did everything in my power to get healthy and somehow change my fate, from running every day to eating an immaculately healthy diet. I found that while my 24/7 V pain had disappeared, I still had stabbing pain with any insertion, and still had this strange yeast-looking discharge at all times. I grew increasingly terrified about sex, and my libido decreased from being higher than any of my friends, all the way down to zero. Because of my problems with V, my relationship of years fell apart, and I am now single. I get asked out on dates all the time, but am too scared to go out with anyone because I know sex is a normal human expectation in relationships. Thankfully, I have a very full and exciting life other than this issue, but I'm not thrilled about having my sexuality taken from me. I'm scared I'm going to live and die alone, even though I'm a perfectly good person, because of V.

Here's my problem as it stands: I no longer have generalized V, and it's primarily only provoked. I only have maybe a day or two each cycle that I feel some discomfort/irritation, but it's maybe 2/10 on pain and can be ignored. My Q tip test was actually negative in my doctor's office this last time, which meant that I don't get to be referred to the expert (who prioritizes her time for only the most severe, cannot wear jeans without 9/10 pain type cases). For now, I have been referred for physio, since the new doctor said that I have constant tension in my pelvic floor and I cannot relax my muscles properly. Has this helped anyone? I really feel like the fact I still have this yeast-like discharge signifies that I have some kind of infection or underlying physiological problem in addition to muscular problems, and I'm disheartened that I cannot go to the expert because my case "only" prevents me from having sex.

My questions for you all:
1) Did anyone else have a dramatic shift in their discharge when their V started? Does anyone know what it means?
2) The expert I'm close to uses a YAG laser for therapy, has anyone had experience with this? I know I'm less important than the expert's other patients because my days are quite pain-free as long as I don't have sex, but I still think I deserve to get my health back by whatever means possible.
3) Has anyone been able to restore sex drive and ability to be attracted to people since suffering from V?

Any help is greatly appreciated Smile

alessandria

Posts : 39
Join date : 2013-12-07

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Post  EviE°Bee Sun Dec 08, 2013 7:43 am

Wowie. I'm sorry to hear about your relationship. Crying or Very sad 

Let me begin with the pelvic floor muscles, from my own personal experience, when engaging in sex my brain is automatically programed to mess up my libido. I know penetration is gonna hurt either a little or alot and I'm gonna have consequences to deal with after (burning, irritation, etc) and I'm gonna have a laundry list of things to do to try and alleviate this pain. All the worry/frustration/confusion will cause a dry vag and stiff muscles. Some say pelvic floor therapy helps, some don't. You lost ur relationship from this which is more pressure when it comes to performance, the next beau who comes into ur life and maintaining your VV symptoms. VV treatments are different for everyone so try and stay positive and maybe look into calming excersises or go see a sex therapist while trying different V treatments. There are so many things that can be done in the bedroom, try not to let VV get the best of you. Unfortunately, this includes non-penetrating sex.

YEAST!!!! I've been having yeast problems the last 2 years. Like you, I never used to get them but I seem to get one once a month. I don't think mine ever goes away. My yeast symptoms differ then anyone elses as well; I itch like crazy, but no discharge, no foul odor. You can try Candida Diet, some people say it helps but I've yet to try it (bleh) you can see if that helps.
My thoughts on discharge is that it must be hormone related. We discharge regularly but more during ovulation. Ph balence is off for some reason.

This didn't really answer any of ur Q's lol but I guess I just wanted to let u know that ur not alone in ur struggles babe.

EvieBee

EviE°Bee

Posts : 72
Join date : 2013-09-30
Age : 40
Location : Southern Cali

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Post  The_Joker Sun Dec 08, 2013 1:27 pm

Hi Alessandria,

I was really interested to read what you had written as I too have the same change in discharge from normal and clear/translucent  to constant thick/white and opaque at all times. I wondered whether this might be hormonal but it only really started when the V symptoms appeared. I did read somewhere that if the tests come back negative for yeast, then the discharge is thick and white because it contains leucocytes (?)/skin cells ie there is some inflammation somewhere and the body is trying to clear itself by shedding more skin cells as a reaction... this made sense to me anyway!  Not sure if this helps you at all but might explain why you have the change in discharge, either that, or the doctors are not testing the discharge for all types of yeast only the most obvious ie Candida albicans.

The_Joker

Posts : 7
Join date : 2013-09-11
Age : 49
Location : South West, Uk

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Post  Leslieg Sun Dec 08, 2013 2:25 pm

I would definitely give PT a try to relates probable muscle tension. Have you tried a quality probiotic for vaginal health. (Ultimate flora or fem dophilus)?

Leslieg

Posts : 86
Join date : 2013-08-09

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Post  alessandria Sun Dec 08, 2013 6:39 pm

It was so great reading this from you all this morning, thank you!! Even though I would absolutely never wish VV on anyone, it is comforting knowing I'm not the only person going through this. EvieBee, I definitely think a lot of the problem with getting back to normal after VV is all of the programming our brains have done to suggest that sex is going to be pain -- it's like the classic negative reinforcement experiments they teach you about in psychology class! It makes me super curious though how we can reprogram ourselves back to not being afraid, and I'm sure that will just be a matter of persistence and finding someone patient enough to work through all the issues. I've been thinking of doing some reading on how former victims of sexual abuse learn how to reprogram themselves to enjoy sex again, since they have also gone through some very negative experiences associated with sex, and I am guessing the topic is a lot more researched than VV is. Maybe there are some good techniques out there for us to try! I still suspect that my problem isn't yeast, but at the same time, I'm not sure what specific cultures have been done to see what might grow (and it would be so, so cool if this was something easily treatable, like yeast!)

The_Joker, the crazy part is that they did a full analysis of a sample from me, and didn't find increased epithelial cells or leukocytes! I have no idea what exactly is making the discharge so opaque, it's like some kind of medical mystery. I have read previously that some yeasts cannot be cultured by the time they are in discharge, either due to being outside of their normal environment or being already dead by the time they are collected for analysis. I wish my physicians were a little bit more communicative to me about what they are doing and whether they are really doing everything in their diagnostic power to figure this one out.

Leslieg, I haven't actually given the probiotics much of a chance yet! I took mine for about two weeks, and then felt like I was getting a UTI or something and immediately stopped. I am considering trying again though, since I could definitely see altered vaginal flora being a cause for VV. I've also bought a ton of yogurt and should probably start actually eating it Smile Hopefully the PT helps, too!

alessandria

Posts : 39
Join date : 2013-12-07

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