Vulvodynia Support
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» Hope to all my suffering ladies
How do you deal?  EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
How do you deal?  EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
How do you deal?  EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

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

» 7 months since the diagnosis
How do you deal?  EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
How do you deal?  EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
How do you deal?  EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
How do you deal?  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 do you deal?  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


How do you deal?

2 posters

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How do you deal?  Empty How do you deal?

Post  Micrm Sun Apr 20, 2014 8:17 am

I am in my 20s, a virgin and am completely overwhelmed with the thought that I may never have sex and therefore never have a functional relationship with a guy. How do you deal with this? I am rollercoastering between blocking out the thoughts and pretending everything is fine and completely breaking down and honestly not seeing a point to living.
Any help?

Micrm

Posts : 4
Join date : 2014-04-16

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Post  alessandria Mon Apr 21, 2014 2:31 am

We all deal in our own ways, I think. Many people on this forum do have great relationships with their significant others, and find ways to be sexual and intimate despite vulvodynia. I'm also in my twenties, and actually was fortunate to have lived for a while without vulvodynia. When it started and it became clear it wasn't going away, I originally was devastated about the idea of not being in a normal relationship ever again. I am in no pain anymore, but vulvodynia caused me to really redefine my life and my goals in a way that was ultimately positive. I have discovered that by following my passions in my career and by making better friends than I ever have before, I became happier than I ever had been before any of this even started. Even though my pain is in remission, I still have little to no interest in dating, and it's because I've realized how wonderfully fulfilling life can be without a boyfriend and without sex, even though those had been so central to my life before.

Think about it this way: there are countless paths to happiness and fulfillment, and ANY of those are valid. Relationships are an easy one for people to get. But how about a deeply fulfilling career doing what you love? Or learning everything there is to know about the things you're passionate about? Having friends to explore the city and world with, and sculpting memories of new adventures? Being in your twenties is actually an awesome time to be single, try not to let the societal notions that you need to have a boyfriend and you need to have sex get you down. It's just an easy way to be happy, but honestly, it's far from the only one. Do some soul searching as to what you love, and chase after your dreams -- it feels a thousand times better than a relationship ever has, trust me. Smile You will be okay, do not despair. I'm always here by PM, if you want to talk.

alessandria

Posts : 39
Join date : 2013-12-07

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Post  Micrm Mon Apr 21, 2014 3:05 am

Thank you so much for the reply. It gives me hope and I'm sure I will be contacting you. If I may ask, what did you do to get rid of your pain?

Micrm

Posts : 4
Join date : 2014-04-16

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Post  alessandria Mon Apr 21, 2014 4:05 am

I think much like everyone else with vulvodynia, I tried a million different things. In brief, what I really thought the biggest things were:

1) Changing my diet and lifestyle: I became much more physically active, and just went to eating healthier foods (lots of vegetables, lean meat, less processed and refined stuff).

2) Changing clothing and cleaning: I honestly wore a lot of ultra tight jeans and lacy/synthetic panties before this all started, and continued to do so for a while. I only wear 100% cotton panties now, and don't wear anything that has any potential to chafe or compress the area. It's more important to be comfortable than to squeeze into the size 2 jeans that don't really fit. Smile I also stopped having sex, and did my best to stop irritating the area. Water is all you need to clean your genital region, soaps can and will irritate you if chemical sensitivity contributes to your pain. (Also, hypoallergenic laundry detergent is a good idea!)

3) This is by far the biggest one: I started doing physical therapy with a pelvic floor specialist. She was able to figure out weak muscle groups and postural issues throughout my body that were all contributing to increased pressure and dysfunction of my pelvic floor. The exercises we did together included a combination of core strengthening and determining how to walk/sit/move, and reacclimatizing my brain to equating a touch in my vestibule as simply being touch, rather than scary and painful. We also worked with dilators, and have gone from barely being able to tolerate the smallest one, to the largest one no longer causing pain. I cannot begin to tell you how wonderful a well-trained physical therapist can be in helping with vulvodynia, and especially in younger women, it seems to have pretty good success rates.

(This is very abridged, but I'm happy to give more specifics!)

alessandria

Posts : 39
Join date : 2013-12-07

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