Vulvodynia Support
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» Hope to all my suffering ladies
21 years old, Self diagnosed, have had for 5+years EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
21 years old, Self diagnosed, have had for 5+years EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
21 years old, Self diagnosed, have had for 5+years EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
21 years old, Self diagnosed, have had for 5+years EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
21 years old, Self diagnosed, have had for 5+years EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
21 years old, Self diagnosed, have had for 5+years EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
21 years old, Self diagnosed, have had for 5+years EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
21 years old, Self diagnosed, have had for 5+years 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!
21 years old, Self diagnosed, have had for 5+years 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


21 years old, Self diagnosed, have had for 5+years

3 posters

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21 years old, Self diagnosed, have had for 5+years Empty 21 years old, Self diagnosed, have had for 5+years

Post  fleshmannequin Wed Mar 27, 2013 5:58 am

My story is sort of long, but hopefully someone will read this! I really just want to get support from others, and know that I'm not crazy and alone in this suffering!!

I'm 21 years old, and I've had what I think is vulvodynia (and possibly vaginismus) for at least almost 5 years. On some level though, I think I've had vulvodynia my whole life. When I was very small I would often complain of vulvar pain (with no physical cause) and had trouble with bubble baths and riding bikes, etc. Things got worse when I became sexually active nearly 5 years ago. Right before losing my virginity, I started to get horrible stabbing pains in my vaginal opening that would stop me dead in my tracks. I went to a gynecologist and couldn't complete the exam. She was very forceful and uncaring and it was horribly traumatic to me (I think this started my vaginismus). During the next few years, I was treated for several vaginal infections, even though later I now realize it was probably just the symptoms of vulvodynia mimicking bacterial vaginosis and yeast infections. So naturally, none of the medications worked, of course. After months of attempted to have sex, I finally was able to. It was not without pain, though. Only once in my entire sexually active life have I had pain free sex (right after I was able to have intercourse for the first time). I have had a few partners and many sexual encounters since then (due to long term monogamous relationships) and have had severe pain with each partner and each time. The pain varies with each time, sometimes I have to stop sex immediately and I literally cry in pain and have to sit on an ice pack to relieve the intense burning and stabbing pain. Other times, the pain is tolerable, but it is always there no matter what. It feels like my vagina is on fire. It is the most uncomfortable feeling. I have also developed urethral burning within the last year, that comes and goes without warning and leaves me huddled up in tears. I have found relief with a perineal wash bottle that I spray on my vulva, and it seems to help a bit but not for long. I am so depressed that I can not have intercourse, it is so emotionally and physically painful for me. None of my partners have been that caring about it, or tried to do anything about it which frustrates me. I am so hopeless at the thought that I will never be able to enjoy sex, and I will always have this fear in the back of my mind. Not to mention, I hardly have sex as it is due to the pain, and I still have sometimes debilitating pain on a near daily basis. Pants are even becoming uncomfortable, and underwear too. Everything feels scratchy and like it's rubbing me raw. My vagina always looks red and feels tender and hot. I'm at a loss of what to do, doctors can't help me at all. They keep doing cultures and saying everything is negative and they can only recommend sex counseling, which is not covered by insurance so it's out of the question for me. I believe I have vaginismus and vulvodynia together. (Perhaps the vulvodynia caused the vaginismus, due to fear of pain?) and I find myself crying so often due to the fact that I don't feel like a woman. I feel guilty as a partner that my boyfriend is now scared to have sex with me due to my constant pain. I'm so worried sex will one day be completely out of the question for me.. Can anyone give me any words of encouragement, or hope? Or has anyone found any relief, even if its just temporary? I'm at the end of my rope...
thanks guys!

fleshmannequin

Posts : 2
Join date : 2013-03-27

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Post  Alana3 Wed Mar 27, 2013 11:24 am

Where are you from? This all sounds like me except mine was provoked not unprovoked like yours sounds. Im considered cured now but I had surgery to get that way. My advice is to not go crazy and try a million "cures" at one time but try one thing and if that doesn't Work go onto something else (after several weeks). A vulvodynia specialist is probably your best bet and you can either go on the nva website OR go to google type where your from and vulvodynia specialists and see if any are available nearby. There is hope im proof of that but you won't be considered for surgery until you exhaust a lot of stuff first (a lot of people aren't considered ever) but there is a lot of stuff you can first and try and get your v to feel better or go away Smile you'll be fine it just sucks waiting to get "cured"

Alana3

Posts : 1093
Join date : 2012-09-25

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Post  Loulou Tue Apr 02, 2013 9:45 pm

Hi fleshmannequin

Its awful to hear that you are suffering. This is a horrible condition but don't let it beat you. There is hope - several people have posted in this forum about their successes and their cures have varied (e.g. physical therapy, surgery, elimination diets, antihistamines) so keep looking for your solution.

You say that you think you've had it your whole life - so have you/your docs looked at things you might have been born with like allergies or structural problems (in your vagina or pelvis - is everything where its supposed to be, the right size, with the right level of mobility etc). If you were born with extra or hyper sensitive nerves in your vulva then maybe medication (eg amtryptiline)and desensitisation through use of dilators could help? Last resort for that would be surgery. What i'm trying to say is that there are lots of potential causes, and therefore treatment options, to consider (sounds like your docs are trying to say its all in your head hence the counselling suggestion). Its NOT all in your head! I agree with Alana - find a vulvodynia specialist and don't rule anything out without exploration first.

I would guess that some of your increasing pain may be due to tight muscles thru tensing and guarding against pain (i agree with you that the vvd pain might be causing the vaginismus) so definitely get a physio to check you out for trigger points in your abdomen, bum, thighs and, if you can get to see a women's physio, pelvic floor. Releasing some of that tightness might provide some relief but you still need to get to the cause. And sounds obvious but have you tried some relaxation/meditation techniques to help you with feeling stressed/anxious? I know my pain used to feel worse when i was stressed.

For immediate pain relief you could try cold packs or lidocaine ointment. I found accupuncture helped with my pain in the early days so worth trying if you can.

You're only 21 but don't be intimidated by the docs. Do some research here and on the web, arm yourself with info and push for a vulvodynia specialist. There is definitely a treatment option out there that could help you.

Loulou

Posts : 124
Join date : 2012-01-18

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