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

» Please tell me this can get better
completely miserable EmptySat Jul 18, 2020 7:38 pm by sammykramer

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

» How I cured my Vulvodynia!
completely miserable EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
completely miserable EmptyWed Aug 14, 2019 2:38 am by agtoronto

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

» IMPORTANT FOR UK SUFFERERS
completely miserable EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
completely miserable 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!
completely miserable 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


completely miserable

3 posters

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completely miserable Empty completely miserable

Post  yellowbird Fri Jun 22, 2012 9:02 am

I'm happy I found this forum, I am just completely fed up and sick of my vulvodynia. I'm in the US by the way. I'm really relieved to see other people have this. I've been suffering all alone for years now and I can't take it anymore.

I used to have a really great sex life, I'd have sex all the time. There were a bunch of events that happened in my life at the same time and sex suddenly became extremely painful for me.

1. I was raped
2. the stock market crashed (lots of stress)
3. I was getting laser hair removal of my pubic hair
4. I had recently stopped taking all these medications (which included neurontin) as my parents had been medicated me for something I did not have for 11 years prior)

suddenly I couldn't have sex with my fiancee anymore. It was awful. He was 100% not understanding of my problem.
I talked to my therapist about it and she thought the pain must be psychological. I go the stupid recommendation by some doctor somewhere to have MORE sex, to schedule sex, make a point of it.
that I think did the opposite of what the advice was meant to do as the pain only got worse and worse.

fist my gyno diagnosed me with vaginismus and told me it was psychological. a year later it was worse and she said I also have vulvodynia which was psychological and I got some gabapentin cream which I'm supposed to keep on my person at all times and apply to the inside of my vagina every 4 hours. it helped so little and destroyed/stained my underwear so I stopped using it.

my biggest problem is my fiancee who is sort of a sex addict but refuses to cheat on me and hates masterbating.
it's this awful cycle.

start cycle: he wants to have sex.
I say no
he argues with me
after a week of being bugged about it I decide I have to do it because I feel bad for him.
I cry during sex
then he sees me crying and feels bad and promises to never have sex with me again
a week goes by and he wants sex again
I say no
we end up having anal sex because he doesn't want to hurt my vulva - which hurts worse than regular sex and I feel awful that he seems to be suffering so much form not having sex
he sees me crying and promises to never have sex with me again
wait another week, start over.

this has been going on for YEARS. honestly, I love him and he's a fabulous guy and treats me SO well EXCEPT for the sex thing. back when I had sex all the time this wasnt a problem at all - but he cant deal with the fact that I can't keep up with him at all. this has made my vulvodynia so much worse - and sometimes I've ended up cutting myself on the arms because I can't deal with the fact theres something wrong with me. I've been able to not cut myself for a few months now, but I'm having trouble with it tonight, so instead of cutting myself I came on here.

I've tried using lube - and it doesn't seem to matter which kind I use - it BURNS. even the kind my gyno had me pick up. sex feels like searing hot sandpaper, and after sex the pain doesn't go away for days. I think there's something wrong with me that I allow him to do this to me, and I sometimes volunteer it - but I always regret it. The I hate him for days - but it's not his fault - I let him do this.

part of why I think I also let him do it is that I was in a car accident about 2 years ago (after the onset of vulvodynia) and I'm in terrible pain all the time in my shoulder, so he rubs my shoulder for me. except he CANT just rub my back, he HAS to have sex if he's going to rub my back, so I trade the pain in my back for pain in the vulva, which in turn makes my back tense up even more.

ah - there's something wrong with me! I ant stop crying tonight. I let him have sex with me earlier and cried again and I can't believe I let him do this to me, and then I'm angry with him for not seeing that this is damaging me.
does anyone else have this problem?

yellowbird

Posts : 1
Join date : 2012-06-22

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completely miserable Empty Don't lose hope!

Post  jmcmil Sat Jul 07, 2012 4:43 am

Hey, I am new on here and just read your post. I want to commend you for not cutting yourself and turning to this site for support. You are NOT alone! Your cycle of sex sounds destructive to you. I know when I force myself to do something that hurts, then it feels worse later. Communication with your fiance' is key. Have you tried other methods to please him besides sex? I know you said he does not not masturbate, however there are other forms of sexual pleasure. You are brave for putting your story out on this site. Don't give up and keep trying things. I, like you have had the creams that not only stain my underwear, they have gone through my pants b/c wearing underwear hurts me...talk about embarrassing..You might want to think about trying a medication like Neurontin, such as Amitryptaline to help with the nerve pain down there..it's just a suggestion. I take it and alot of other women on this site seem to take it and it helps. Don't give up and keep turning to this site for support! Hang in there! I hope things get better for you..

jmcmil

Posts : 10
Join date : 2012-06-27
Location : US

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completely miserable Empty Test for Ureaplasma

Post  lavrose Sun Jul 08, 2012 2:38 pm

Ok guys. I promised God that if he helped me find a cure for this horrible, life ruining, afflicting, 24/7 misunderstood condition, I would share it with everyone, as I have done TIRELESS research, read every book, scoured the net, and consulted with many doctors. Im 32 years old.
Ive always had a problem with painful sex, and a constant burning vag, but recently I was diagnosed with something far more horrible. Interstitial Cystitus.
Painful Bladder syndrome. Many women with Vulvodynia, many times have interstitial cystitus aswell, and I do frequent UTI's and I control them with a daily probiotic, but this particular bladder infection would not go away. Guys, this condition has literally ruined lives. Women hav e to go on disability for it. Imagine a voracious, raging UTI that never goes away. ever. and there is no cure. Its one thing not to be able to have sex, or sit for too long, or wear anything tight. But to be aware of constant, swollen, urethral frequency and burning, having to go to the bathroom every five minutes, cant sleep thru the night, the pain is compared to Cancer. People have to go on methadone, and antidepressants over it. Anywho, After I wept and begged on my knees for God to cure me, and help me, and even called a prayer line (LOL!!) and cried on my moms shoulder, (she prayed with me for a cure also) I made an appointment with a Urologist in Cleveland, Ohio at the Cleveland clinic. The best in the country. I got diagnosed with Ureaplasma, and Im currently on a strong 30 day course of antibiotics, (augmentin, zithromax, doxicycline) then I will be on long term antibiotics for the duration, until I test negative, which could take over a year.
Many people dont know too much about Ureaplasma, so please, please google it, and try to find a doctor that will hear you ,and test you. There are links to this with V too.
The test is expensive, and many doctors havnt even heard of it, so you have to shop around. because Ureaplasma is linked to IC, (urethritis) it is also linked to infertilty, miscarriage, and premature birth. Maybe shop around for fertility doctors, say your trying to get pregnant, and your concerned about Ureaplasma. Its worth it guys, I feel 100% better now that I am taking the proper treatment. This little bacteria is prolly the the one responsible for a lifetime of pain, and ruined relationships.
The oils. I make suppositories with coconut oil, (frozen, in sport bottle ice cube trays) with various essential oils, and Ive been able to have a sex life and sometimes, pain free sex life, since I started this. The thing is. You have to rotate the oils, I learned this. For a couple of years I was just using tea tree (and douches are horrible by the way, please dont put them in douche, been there, done that) after awhile, it didnt work and I didnt know why. The Boric acid suppositories. Worked for awhile, then didnt work at all. Then Myrrh oil. Which is great by the way. Then lavender and rosemary oils. Also awesome. Then Tyme oil, and oregano oil. Awesomness. Also, grapefruit seed extract is great too. Now Im doing Geranium oil, and its the skin of my vag is very soft and supple, non itchy and completely burn free. It feels strong, and healed...Im totally down for sex atm ), but currently single again (..but yea. Start out with a few drops, first few days, then work your way up to where you feel comfortable. I use quite a bit, especially for raging pain or infection, but everyones different.Theyve
lavrose
lavrose

Posts : 152
Join date : 2012-04-28

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