Vulvodynia Support
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» Hope to all my suffering ladies
Are there marriages that have survived this? EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
Are there marriages that have survived this? EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
Are there marriages that have survived this? EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
Are there marriages that have survived this? EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
Are there marriages that have survived this? EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
Are there marriages that have survived this? EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
Are there marriages that have survived this? EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
Are there marriages that have survived this? 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!
Are there marriages that have survived this? 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


Are there marriages that have survived this?

+5
BpCookie
Elc88
Sarah001
Alana3
Cat_in_Canada
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Are there marriages that have survived this? Empty Are there marriages that have survived this?

Post  Cat_in_Canada Sat Jul 20, 2013 4:59 am

Hello,

I'm new to the site and want to share my story with people that might understand. I'm so embarrassed and ashamed. I'm almost 30 and I am still a virgin. As far as I'm aware, I've had vulvodynia and vaginismus my whole life, although I wasn't diagnosed until I was about 25. I've never been able to even wear tampons or have a pelvic exam. I was examined once, by the doctor that diagnosed me, but I had to be given a general anaesthetic.

I have the most amazing fiance (I was so shocked when he proposed, I figured it was only a matter of time before he left me), but sometimes I feel like I'm taking advantage of his good nature. We started dating before I was even diagnosed, but I knew something was wrong with me and I sometimes feel that I tricked him into falling in love with me. Is our marriage doomed? Are there marriages that have survived this? I'm still trying to get better: I'm on drugs, see a psychiatrist, a physiotherapist, and a gynecologist, I sometimes I get quite hopeless that I will ever get better.

Thank you for reading my post. I'm too afraid to tell any friends or family about my vulvodynia/vaginismus, the only people that know aside from my fiance are medical professionals. We have a lot of mutual friends, and I worry that if his family or friends found out the truth about me they would hate me and lose respect for him.

Cat

Cat_in_Canada

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Post  Alana3 Sat Jul 20, 2013 11:57 am

Uh I don't know why someone would hate you for something you can't control. It's like having cancer, being diabetic or something. Its nothing you can help. I will tell you all my friends have been very supportive and my family too- my mom went to doctor to doctor with me until I got "cured". You dont have to tell anyone but if they lose respect for you or blame you are those really the people you want in life? As frustrating as it is there are treatments that can help you- I'm perfectly fine now I had surgery back in December and can do anything I want. So finding the right doctor is very helpful. I googled vulvodynia specialists and found my doctor. Another thing to remember is relationships are not all about sex and there are other things you can try to have sex. Have you tried any treatment?

Alana3

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Post  Sarah001 Sat Jul 20, 2013 12:23 pm

To be honest I think the fact he has proposed knowing the situation as opposed to the problem starting after a "normal" sex life had already been happening gives your marriage a very good chance of surviving. If a lack of sex was bothering him he surely wouldn't propose would he? It's different when it appears after a normal sex life because it changes the dynamics but as he's fully aware of the situation and it hasn't put him off he sounds like a keeper to me! My partner left me because of all my health problems including the V because he "couldn't have a normal life" with me but we'd had 6 years of me being fine before my connective tissue disorder became symptomatic and the V arrived during the last 6 months we were together so the lack of a normal sex life was kind of the final nail in the coffin of my relationship but in your case your fiance is going into this with his eyes wide open so your marriage has as good a chance of anyones of making it. Good luck with all the things you're trying and I hope they help you.
Sarah001
Sarah001

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Post  Elc88 Sat Jul 20, 2013 1:56 pm

My boyfriend and I had been together for 6 months when my vulvodynia reared it's ugly head. We've now been together for 4.5 years, and while this vulvodynia has hindered our relationship, it's not ended it. I completely sympathise with you - my boyfriend and I have been together long enough that I feel we could take that next step and get married, and it's raising all sorts of questions like yours.

At the end of the day, your fiance proposed knowing the full situation, your relationship has survived this whole time with him knowing this from the out-set, and knowing that it's a long term affliction. I suppose you need to ask your fiance if he is prepared to accept the fact you might never get better, and that it means there is a chance you might never have kids together (although I really hope that this will never happen). If he can accept that, then he is going in with his eyes completely open, and it will take some of the pressure off of you. It also means that when you do finally get over this, it will be all the more special, and at your own pace!

Elc88

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Post  BpCookie Wed Jul 24, 2013 2:43 pm

Ive been married for almost 14 yrs, Ive had this Burning Bush thing for over 2 yrs. Our sex life has dwindle down to about once every two weeks. My hubby is understanding, supportive, loving and helps me in any way that he can. I am a very lucky person. So relationships can last a life time. Your partner needs to be willing to work with you, learn what Vuvodynia is and be supportive.
BpCookie
BpCookie

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Join date : 2012-01-25
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Post  Cat_in_Canada Sat Jul 27, 2013 4:16 am

Thank you everyone for your kind words and support! I met with a new physiotherapist last week and am now feeling cautiously optimistic. Its nice to hear that other relationships have been able to deal with vulvodynia. I'm sorry to hear about your partner leaving you, Sarah001. That must have been very difficult. I'm know I'm really lucky that my fiance seems to be relatively satisfied with our sex life, even though intercourse is off the table.

Thank you again! :-)

Cat

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Post  iheartcereal Sun Aug 04, 2013 4:26 am

cat_in_canada - As I was reading your story, I thought I was reading my own! I am 32 and believe that I have been suffering from the same things all my life, without having a clue. I was never able to wear tampons and didn't have my first pelvic exam until I was 24 or 25 and it was one of the most horrible experience of my life. Unlike you, my doctor did NOT diagnose me and I endured several more years of horrific pelvic exams. - just thinking that it was supposed to be this way because I was a virgin. It wasn't until I developed an unidentified itching almost 5 years ago that she finally suggested that I see a specialist. Since then, I have seen many doctors, therapists, psychiatrists, used dilators, taken medication, and am on my second round of PT.

I have been married for almost 6 years, and with my husband for 8. I was 26 and a virgin when we married and did not have actual sex for the first time until I was 30. Because I did not receive a correct diagnosis from the get go, I waited far too long to rectify the situation (I thought there was something mentally wrong with me and didn't realize vulvadynia even existed) and I will admit, it has been hard on our marriage. Round one of physical therapy combined with anti anxiety medication is what allowed me to have sex for the first time. However, sex was never pain-free and after I finished PT and weaned off my meds, things seemed to worsen and I can no longer stand to have penetration. Now my doctors think I have some neurological issues along with pelvic floor dysfunction, so I am back in PT and am on some new meds.

When we married, my husband didn't know exactly what he was getting into, but he has mostly been supportive throughout. After things started to decline after round one of PT, I took it very hard and lost a lot of hope of ever getting better. That has negatively affected my mood and sexual interest, which has been really hard for my husband to understand and cope with. We are currently trying to work through things, and I think we will in time. My advice would be to keep the lines of communication as open as possible and never lose hope. Like you, I feel so embarrassed and ashamed and find it difficult to talk about my condition even with my husband! I just want to be a normal wife and it's so frustrating that I don't feel that way. Only he and my health care professionals know that I have vulvadynia and I am also afraid to tell my friends. It's not that I think they would hate me, but I'm afraid they wouldn't understand and may be callous to my suffering, which would only make me feel worse. That's why I find these message boards so helpful! If your fiance proposed knowing all of this about you, then I think you've found a keeper! Also, my husband really wants kids and I thought it was impossible with my condition, but as I do more research, I am finding that it IS possible to have children and live with vulvadynia.

Sorry for my long post!

iheartcereal

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Post  Cat_in_Canada Sun Aug 25, 2013 3:04 am

Thank you for sharing your story. It is nice to know that I'm not alone :-)

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Post  Sebby (Admin) Thu Aug 29, 2013 4:16 pm

Just wanted to say that my now husband proposed knowing all about the V and we are celebrating our 1st wedding anniversary in a couple of months Smile I have also been to one wedding of a friend I met on here and have just been to a hen night of another friend I met on here! All fiances proposed knowing the full extent on their V.
I still get flare ups and struggle wiv intercourse but we are working thro it together. Keep strong and as positive as possible, I know it's hard but take one step at a time x
Sebby (Admin)
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Post  mary jane Sat Oct 26, 2013 5:21 pm

congratulations, sebby !
mary jane
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Post  Mark Fri Nov 15, 2013 11:32 pm

My wife and I married this year having lived together for more than a year. She told me about her condition the moment I asked her out, so I've always known what I was getting into. TBH we have the best sex life I've ever known because we don't have vaginal sex. This may sound like a strange thing for a man to say, but IMO it's the least satisfactory type of lovemaking from a male perspective because of the ever-present fear of climaxing too soon and ruining the fun or trying to delay things so much that I might lose my erection and seem not to be turned on. I can see that marrying a woman who later develops vulvodynia might cause a man to have to change his expectations about sex, which some might find difficult. But anyone who marries a woman knowing she has the condition surely loves her for who she is and is committed to helping her have a happy life.

Mark

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