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

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

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

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

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

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

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

» Help New Diagnosis
Looking for Someone to Listen 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 Someone to Listen 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


Looking for Someone to Listen

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Post  Trying Mon Aug 08, 2011 6:27 am

Hello everyone,

I've been searching online for some sort of vulval pain support group since I don't have any friends or family who want to talk with me about my vulvodynia, which is what the doctors have said I have. It's getting to be too much to handle on my own, and my ex-boyfriend of 3 years did not know what to do to help me either. I feel very alone and hopeless.

Since I first had my period when I was 14, I cried whenever I tried to put in a tampon. My sister/mother laughed at me, saying I must just "have the wrong hole". Ashamed and embarrased, I have avoided using tampons unless absolutely necessary, and have never once had a pain-free tampon insertion. However, I don't have any pain unless a specific area is touched, so I suppose I'm lucky compared to some women who have pain all the time. (Although "lucky" is a relative term.) Razz

10 years later, I saw numerous doctors after trying to have sex multiple times, with it ending quickly with nothing but pain and tears. A geneicologist finally told me I have vulvodynia, and for 2 years now I have tried numbing creams, antidepressants, acupuncture, and physical therapy, but to no avail. All methods seem to relieve about maybe 10-20% of the pain only, which is on a scale of about 8/10. This means I still can't have sex - all I feel is pain, no pleasure at all. My ex-boyfriend, who wanted a sexual side to our relationship, couldn't understand my problem. He tried to be very gentle and caring, but I just had no desire whatsoever, because everything ended in pain for me. We tried seeing a counsellor and trying alternative ways to be intimate, but in the end he needed my vagina to be a part of things or it just wasn't good enough. I never really had much of a sex drive before this, but now I dread the thought of anything and feel resentment and anger.

So after 3 years, I have broken up with him because I just can't take the torture anymore - trying to please him while not wanting anything and feeling constantly pressured to try again - because "this time it might be good". He's asked how he can help, and I don't know. Not having a sexual relationship doesn't seem like something any guy would agree to. All I know is that I feel extremely alone and hurt.

To add to this physical problem, it also doesn't help that at about the age of 16 I learned that my father is addicted to pornography, and my parents divorced. We had been a very loving, happy family before this - but afterwards it ended in ugly arguments and a broken home. My poor mother just couldn't take my father's lies and false promises anymore. That shattered my once-good relationship with my father, who chose pornography over his family. Since then, I have had a strong distrust of men as being controlled by their physical desires. Although this distrust started after my original discovery that I could not insert a tampon, I'm sure this mental issue doesn't help my physical one. Although it's definitely hard - sometimes I wonder if it's just all in my head, that I'm mad at men and I've done this to myself with my negative thinking. My boyfriend has told me to just relax more and maybe it'd be fine. It's heartbreaking. I hope it's not just in my head, but who knows.

So, this is where I am: feeling alone and depressed and like a complete freak. Breaking up with the man I love because I can't take the pain and guilt and anger and resentment and arguing anymore. No one seems to understand how I feel or what I'm going through.
I guess I hope by posting on this site I can finally find someone who can understand what I'm going through. Even if there's no advice, it'd be nice to know I'm not alone in my suffering.

Thanks for listening,
Trying


Trying

Posts : 3
Join date : 2011-08-08

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Post  Sarah001 Mon Aug 08, 2011 12:08 pm

Hi and welcome. I think you should read a copy of "When Sex Hurts" which lists all the reasons for vulvar pain. As yours started from first tampon use it sounds like you might have a genetic overgrowth of nerve endings in the area which I believe they would use lidocaine on plus dilator work to get used to penetration slowly and of course pelvic floor therapy if those muscles are tight. It's a very good book that removes the mystery behind the useless non-diagnosis of "vulvodynia". Have you tried lidocaine at all? Also not all physiotherapy is created equal so it may be you didn't get to do the things you needed before, it really depends what your PT involved. There could well be a psychological element not just because of your recent family issues but also because your sister and mother laughed at your inability to use tampons so there could be some tensing up involved because of how worried you were about it with no input from family. I would start with that book though and see if there are treatments listed in there you haven't tried and go from there.
Sarah001
Sarah001

Posts : 1164
Join date : 2010-06-11
Age : 50
Location : UK

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Post  Mouse Tue Aug 09, 2011 10:31 am

Hi and welcome. How very brave telling your amazing story. I'm really sorry you have had so much pain and incredibly sad that your relationship ended.

It sounds like you have been searching for answers without a lot of support. When you say you have had counselling, do you have a supportive relationship now? For a lot of us that's the one relationship that helps the most. Have you been completely honest with your Mother and sister? This is a really difficult condition to cope with alone maybe you could try to gather some support from your family. There's a lot of information on vulvodynia available now maybe you could offer them some research to read. Do any of your friends know? Could your ex become a friend or is that too hard?

Unfortunately there are a lot of women on this site around your age who they are facing the same issues. Between us we've tried most things and we've got a lot of advice. I think Sarah's suggestion is great, reading and researching is a great place to start. I'm fairly big on lifestyle changes. Taking good care of yourself, making dietary changes (yes I mean sugar), exercise (if you can), face time with favourite people, good sleep, time in the sun, meditation, a supportive relationship with a therapist - anything really that nurtures you.

Good luck Very Happy




Mouse

Posts : 303
Join date : 2010-09-09
Location : New Zealand

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Post  Trying Mon Sep 05, 2011 7:52 am

Thanks for the advice ladies.
I picked up a copy of "When Sex Hurts" and it is indeed an info-packed and very new, up-to-date book. I'm still reading through it, but it's nice to know that at least some doctors care about this issue and are working towards researching and understanding it more!

I've also made an appointment to talk with a sex therapist. There's only one licensed practicioner in my city, and it costs a whopping $170/hour! Even with my health insurance, I'll still be paying $120/hour, ouch. I'm still paying off student loans and don't have a lot of money, so it's pricey. I know it's important and health is worth the time and effort, but still.... Sad

Anyhow, hopefully the psychologist I see in a few weeks has some new input and ideas for me to try. I might also try some physiotherapy with a centre that's supposed to be familiar with vulvodynia. But again, the issue of location and cost make it difficult to squeeze into a busy/low-income schedule. I guess I just have to try and be positive and hope that there are small investments into becoming healthier.

Trying

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Join date : 2011-08-08

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