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Do you ever worry that you're making it up?

Fri May 27, 2016 6:50 am by Lucci

Hello,

I was diagnosed with Vaginismus and Vulvar Vestibulitis 10 years ago. I was 18 and scared and moving across the country for college, but luckily was able to find a doctor who specialized in 'Women's Health' who immediately put me into physical therapy. Long story short, I've been in and out of the system ever since.

A few years into treatment, I had the diagnosis of PTSD added on for …

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Clitoris Issues

Tue Apr 28, 2015 8:17 pm by January

I am going crazyyy trying to figure out what's wrong. Please does anyone else have an issue similar to mine? I'm only 22. So, basically when my clit is lightly rubbed, there is no feeling. However, when rubbed vigorously and directly, the burning and tingling sensations shoot down my legs and feet as if coming to the end of an orgasm but with no good feeling leading up. It's so strange. What …

Comments: 2

Cured of Vulvodynia

Wed Aug 17, 2016 1:39 am by angelique2016

I used to post on this forum a long time ago and told everyone of how I was cured of my vulvodynia by a (Melbourne Australia) female dermatologist, she put me on very low doses of Nortriptyline (Allergron) for pain management about 10mgs I believe it was, and she also had me use Advantan Fatty Ointment (not the cream) (although I saw the cream for sale on ebay from germany) so it might help, as …

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Vulvodynia and IVF? Anyone done this? What does it do to the vulvadynia?

Sun Jul 30, 2017 1:03 am by Carolyn4

Hi everyone,

I have had vulvodynia since age 27--I am now 43 and it has been in pretty good remission.  I control it with acupuncture and herbs, and some cranial sacral therapy.  I have a 5 year old, had a pretty uneventful pregnancy which ended in a c-section.  My VV worsened after that, and I have worked hard to get it back under control (it took over a year to get it back into pretty good …

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Partial Vestibulectomy

Mon Jul 31, 2017 6:44 pm by JGD13

Hi all i am new here.
I had a partial vestibulectomy 21/7 for my provoked vulvodynia.
After a painful few days and feeling quite uncomfortable it seemed to get better. 1 week after i noticed some white stuff and gloopy discharge, it wasnt smelly or itchy but i got a check up at the gp surgery and the doctor said the stitches looked fine and i could just have a touch of thrush. He said this is …

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Post Vestibulectomy

Thu Aug 03, 2017 6:15 pm by infinitelywondering

Heya,

I had my vestibulectomy (full) about a day and a half ago. I was very sick and poorly just after the op and experienced intense pain down there Sad

However, today I came home and have done the following things:

-washed with warm water
-applied manuka honey to the area
-ensured I wash at least 3 times a day and dab the area dry gently
-use frozen peas to stop the swelling

As of now I am …

Comments: 1

New w/ Secondary Provoked Vestibuldynia

Wed Apr 26, 2017 11:46 pm by Birdy

Hi everyone,

I'm here because I'm pretty sure I have secondary provoked vestibuldynia, even though my gyno is still "optimistic" it is not.  My problem started six months ago when I got my second UTI in as many months (after going 25 years of life without one) and then ended up with a bad yeast infection (also my first one ever) thanks to the antibiotics.  Ever since the yeast …

Comments: 3

Anyone from the PNW?

Sat Aug 05, 2017 7:54 am by jungleclover

I'm located near Portland and I would be really cool to actually meet someone with this issue. I think my roommate in college technically had this problem. She had an overgrown hymen removed and can't deal with penetration as a result. But she is gay so it seems like it hasn't been a huge problem for her (although we didn't talk about it much so there was possibly more to it than she let on). …

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Constant pain, I want to die.

Fri Jun 02, 2017 4:29 am by Meggiemay

I posted on here a few years ago but my symptoms went away with the inflammation. I didn't get so lucky this time.

For over three months, i've had terrible rawness, burning, soreness in the urethral/vestibule area and pressure/hypersensitivity in the clitoral area. I've also had some lower abdominal pressure and burning on my butt. I can barely walk! My gyno hasn't been much help. I'm on …

Comments: 22


Are there marriages that have survived this?

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Are there marriages that have survived this?

Post  Cat_in_Canada on 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

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Re: Are there marriages that have survived this?

Post  Alana3 on 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?

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Re: Are there marriages that have survived this?

Post  Sarah001 on 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.
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Re: Are there marriages that have survived this?

Post  Elc88 on 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!

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Re: Are there marriages that have survived this?

Post  BpCookie on 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.
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Re: Are there marriages that have survived this?

Post  Cat_in_Canada on 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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Re: Are there marriages that have survived this?

Post  iheartcereal on 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!

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Re: Are there marriages that have survived this?

Post  Cat_in_Canada on 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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Re: Are there marriages that have survived this?

Post  Sebby (Admin) on 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
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Re: Are there marriages that have survived this?

Post  mary jane on Sat Oct 26, 2013 5:21 pm

congratulations, sebby !
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Re: Are there marriages that have survived this?

Post  Mark on 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.

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Re: Are there marriages that have survived this?

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