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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 …

Comments: 7

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 …

Comments: 10

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 …

Comments: 1

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 …

Comments: 6

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). …

Comments: 0

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


need to know its gonna get better

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need to know its gonna get better

Post  nova_chek on Sat Sep 29, 2012 2:25 am

Hi my name is Nova and I have been suffering with vulvodynia for 2 1/2 years now, this is the third time I've dealt with this issue. Almost a year ago I was properly diagnosis and was able to find the correct treatments for this condition. Things were going well when I started going to Physical Therapy and using a dilator set, my pelvic muscles where crazy tight, so much it was curving my tailbone inward! I am also sensitive to candida, so along with changing my diet and other things everything seemed to help. Then I went back home and cheated on that diet and I really suffered for that one. That was getting better and then had some lower back muscle issue which brought up the pain a bit. Guess I had high hopes that this would go away like the other two times. I know stress is a huge factor for me. I have found doing yoga and deep breathing exercises really help with pain level. Usually I am pretty optimistic about this issue, but I'm sure everyone here knows we all have our breaking point and I'm at mine right now. It seems like every time I hit bottom, my husband and I have a huge fight. It seems like no matter how supportive he is and tries to understand the issue there is no way to take away the frustration he has.....who can blame him. So was searching online for some type of support, women I can talk to about this who know what I'm saying. I have great friends and family, but they will never understand the physical and emotional toll this chronic pain issue does to a women. I feel hopeless right now and all I want is to have a normal happy marriage and hopefully one day have kids.

nova_chek

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Re: need to know its gonna get better

Post  LillyK on Wed Oct 03, 2012 5:09 am

Don't give up Nova! You are going to get through this, and you can still have kids! I am so sorry you are having a terrible time right now. No oneshould have to go through it. I hope your husband will be more understanding soon. Stress is a huge issue for me too and I have had so much of it this year that my problem came back after 5 yrs pain free. I have to go now but if you need to talk please feel free to reply!

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Re: need to know its gonna get better

Post  Alana3 on Thu Oct 04, 2012 4:54 pm

It will get better, I went to a new doctor and am now pain free (first time in forever) but I only have localized v, so it may be different if yours is everywhere. I was given a topical and it makes everything feel so much better! Surgery is my next option, but I am trying this first. I'm not so sure about changing the diet deal. Yeah, it's a good idea but the nerves are still there, so if you don't treat the v I feel like you're just masking it. I also do Yoga and acupuncture and it seems to work really well. But this medication is amazing. He also gave me lidocaine patches that you put on the part that hurts, and the pain is gone within minutes (apparently it numbs it enough to have sex, I haven't gotten that far yet, as I don't have a boyfriend and have only been on this stuff for a few days). But a few days is all I needed to start feeling better. I don't know where you are, but my doctor in Florida is absolutely amazing. It's a lidocaine/gaba/amysomething compound that you put right on the irriation. At first, it burned, but now I don't think anything of it, and for the first time in 4 years I am unaware that I own a vagina. (Who knew?!). Maybe look around for a specalist I went to about 10 doctors before I found this one, he was able to point right to it and say here's your problem and this is what it is. He also showed me too! I thought it was all around but it's only in one spot. The point is don't give up!!! There are really good statistics for the compound I'm using and the surgery itself. I'm just worried that it will make it worse or come back. Questions I need to ask next time, but so far so good! Good luck to you and hope your pain goes away soon, this is such a pain and I feel for everyone on here, I was close to sucidial before anyone came up with an option for me Smile

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Re: need to know its gonna get better

Post  nova_chek on Fri Oct 05, 2012 2:34 pm

LillyK- thank you for your kind words and support. After my husband and I spoke I came out of my depression, he reassured me that he isn't going anywhere and he loves me. He also made the comment so we don't have sex, such a relief to me! I guess I put so much pressure on myself to get better so we can have sex and I need to let that go. He also wants to let him carry some of the burden so I don't get so down. I know if I think positive then things will get better, pain level anyways is better when I'm not upset. Next step getting pain free!!! Thank you!!!!

Alana3- my doctor told me about the lidocaine stuff, I'm hesitant to try it cause I know it won't get rid of the problem. I tried an anti-depressants for a few months, it blocked the pain, but it knocked my butt out 24/7. I never had any energy for anything. I will keep the lidocaine a possibility though. I have had luck with my physical therapist, doing yoga, seeing a neuro-muscular massage person (wonderful) and now am starting to see a chiropractor. I have realized the root of my pain is tight pelvic muscles and just learned from the chiro that my hips are not aligned. I also want to try meditation, cause I have noticed if I do some deep breathing exercises then it takes the pain away, I'm able to relax all the muscles and clear the mind. I know everyone's root of the pain my be different, but for me its crazy how simple the solution is, but yet so hard to attain. Who knew I would have to learn to relax my pelvic muscles! Oh and you talked about diet. Well after my thyroid surgery I developed allergies, never was allergic to a thing in my life until that time. One of the allergies is candida. Candida is like adding fuel to a fire and I have had to learn this. Basically I can't eat anything with a lot of sugar, so no sweets or even fruit. Also I don't eat yeast anymore, nothing with mold, nothing fermented or with buttermilk in it. I have had to cut out a lot of stuff, even healthy stuff, like no more fruit or yogurt! I take nystatin if I want to have a little bit of cheat days, but I learned this summer even taking nystatin cheating a lot irritates the skin and back to being in pain! I know some women have luck with a low oxalate diet, I tried it and it didn't affect me. Maybe this is something to try. For how bad this pain is I wish there was a clear cut answer as to why and how to treat it! Thanks for the info.

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Re: need to know its gonna get better

Post  Aussie on Mon Oct 08, 2012 11:06 pm

Alana3 wrote:It will get better, I went to a new doctor and am now pain free (first time in forever) but I only have localized v, so it may be different if yours is everywhere. I was given a topical and it makes everything feel so much better! Surgery is my next option, but I am trying this first. I'm not so sure about changing the diet deal. Yeah, it's a good idea but the nerves are still there, so if you don't treat the v I feel like you're just masking it. I also do Yoga and acupuncture and it seems to work really well. But this medication is amazing. He also gave me lidocaine patches that you put on the part that hurts, and the pain is gone within minutes (apparently it numbs it enough to have sex, I haven't gotten that far yet, as I don't have a boyfriend and have only been on this stuff for a few days). But a few days is all I needed to start feeling better. I don't know where you are, but my doctor in Florida is absolutely amazing. It's a lidocaine/gaba/amysomething compound that you put right on the irriation. At first, it burned, but now I don't think anything of it, and for the first time in 4 years I am unaware that I own a vagina. (Who knew?!). Maybe look around for a specalist I went to about 10 doctors before I found this one, he was able to point right to it and say here's your problem and this is what it is. He also showed me too! I thought it was all around but it's only in one spot. The point is don't give up!!! There are really good statistics for the compound I'm using and the surgery itself. I'm just worried that it will make it worse or come back. Questions I need to ask next time, but so far so good! Good luck to you and hope your pain goes away soon, this is such a pain and I feel for everyone on here, I was close to sucidial before anyone came up with an option for me Smile


Alana glad to hear your localised pain has improved. Do you have pain 24/7 or just when the area is touched? Would you be kind enough to post here the name of the prescription cream you use and what percentages of each medication so others can take it to their doctors to try?. Also what base the cream is, is it a versa base? It is often the bases of the creams that irritate as they are full of perservatives. Your doctor should tell you this if you don't know Very Happy

Thanks.

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Re: need to know its gonna get better

Post  bluekangeroo on Thu Oct 11, 2012 8:40 am

Hi Nova, have you read 'teach us to sit still' by Tim Parks? Or 'A Headache in the Pelvis"

I've not read the headache one, but am reading the Tim Parks book now, it's all about his search for a cure for his pelvic pain (yes men can get it too and with even worse problems added in like urinary issues) some of his symptoms like finding it unbearable to sit down are so similar to mine - I found it fascinating. Anyway the book is an autobiographical novel, even quite funny in places, he is a great writer, and its about all the doctors he saw and the hopeless time he had, until he found the book a headache in the pelvis and learned that through relaxing his muscles he could make the pain go away, himself with no drugs.

I'm not sure what happens next as I've not finished it yet, but am hoping he is going to discover meditation and that is going to fix him, nice and simple! ha!

But it struck me that your experiences have been so similar with being able to control the pain through yoga and meditation, I thought you might find it interesting and encouraging, if you have not read it already?

The first part is hard going all about the pains and the hopelessness of finding no cure, but part two is when he hits upon this book and I think it is going to get more positive and helpful!

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Re: need to know its gonna get better

Post  nova_chek on Fri Oct 12, 2012 12:31 pm

Thank you so much, I have never heard of those books. They sound like they would be encouraging, let me know how they are, not sure when I will be able to get those, but will def look into them!

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Re: need to know its gonna get better

Post  Aussie on Mon Oct 15, 2012 6:52 am

Also heal pelvic pain by amy stein is worth a read!!!

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Re: need to know its gonna get better

Post  nova_chek on Mon Oct 15, 2012 1:06 pm

Thank Aussie!

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Re: need to know its gonna get better

Post  bluekangeroo on Mon Oct 15, 2012 1:22 pm

Hi Aussie, did you find that book helpful?

I thought it made a lot of sense but after doing the stretching routine religiously for a month I had worse and more constant pain. Had to give it up.

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Re: need to know its gonna get better

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