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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


New Here -- this is my story

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New Here -- this is my story

Post  calidreaming999 on Mon Apr 04, 2016 10:45 pm

Hi everyone,

I am 28 years old and have been suffering from what I think is vulvodynia for 7 years now. It's been a very challenging 7 years Sad Especially listening to all my friends have normal, fun and adventurous sex lives whereas I am too afraid to even have sex for the pain it will cause and all the emotional blocks I have up now. But let me start from the beginning.

When I was 21 years old, my second sexual partner took off his condom during intercourse. A few days later, I had horrible stinging and burning and an incredibly red vulva. I was convinced I had herpes and I was terrified. I went to a clinic where I was diagnosed with a yeast infection. I took the medication prescribed, and all seemed ok.

Except, this yeast infection seemed to set off a chain reaction and my vagina has literally never been the same since. I feel frequent burning and nerve pain throughout the pelvic region -- vagina and buttocks. Through all my research online I was CONVINCED I must have herpes, though I never actually had any sores or outbreaks. In Canada, I couldn't get a blood test but I begged and begged at one clinic where they finally allowed gave me paperwork for a blood test which I took. I had been SO convinced I had herpes and would have to live with it for the rest of my life, but to my surprise the test came back negative for both strains. I don't want herpes, but at least I would have had a diagnosis.

Over the last seven years I have been tested for STis NUMEROUS times. Everything comes back negative, including yeast (although I did just get a positive yeast swab in February which I treated with diflucan). I get very itchy around the pubic/mons pubis area and often break out in what looks like a rash there. Every GP has told me that my vagina looks completely normal and sends me out the door with steroid cream. But none of that helps and none of that addresses the daily burning sensation I feel. For a long time, I stopped going to the doctor and stopped trying to get answers. I was convinced that I was never going to get relief, and that I was never going to find an answer for what I had. I gave up and I was closed off.

Just this year, I ended up meeting a really great guy who was different than any other I had met before. He valued me for who I was as a person, and didn't pressure me for sex immediately the way men in the past have. So of course, I really wanted to have sex with him. But I still had this lingering fear in the back of my mind that I had herpes -- what else could it be, right? So I went back to a new, young female GP. I got another herpes blood test - negative. And another swab. All negative.

Now I am really trying to figure this out and understand what is happening to my body so I can have some type of normal dating or relationship in my life. I forgot how nice it is to have someone in your life romantically, as I just shut down from the idea before. I am currently seeing a naturopath and I'm on a candida diet which has helped to a degree but I'm not sure if it's correlated to the symptoms or if I'm just having less of a flare up at the moment. I've switched to all sensitive skin detergents, only cotton underwear, looser pants, etc. I am taking daily probiotics and using a vaginal probiotic cream that I put on 2x a day topically. I do feel some relief of symptoms, but nothing is completely gone. I'm also trying to get allergy and food sensitivity tested -- the only time I remember having relief of these symptoms was about two years ago when I was on a really big fitness kick. I had cut a lot of things out of my diet and was exercising all the time and lost quite a bit of weight. I lost my period as a result, but I also remember not having any of these symptoms and pains and feeling like I may finally be free. Leads me to wonder if there may be a hormonal tie-in or dietary tie-in, although I have yet to see complete relief from my current diet which is much more restricted than I ever was before.

I am also demanding my GP refer me to a specialist, a gynaecologist, and a dermatologist. She prescribed me antidepressants to help with the nerve pain but I'm too afraid to try them. I have an active social life and like to go out and enjoy drinks with friends (not presently as part of the diet) and I am scared as to how they make impact my moods or personality. I also don't want to gain weight or become drowsy and tired -- I've already given up caffeine to help and I am missing my coffees so desperately.

I just cannot accept that there is no way to get relief and to heal from this dreadful affliction. I also cannot believe a yeast infection could have triggered something like this for so many years now. I try to be a very grateful person but I cannot help but think why me? How did this happen to me? I am very lucky in many ways but this has robbed me of so many years that should have been carefree and enjoyable and I have felt like a broken, damaged woman who cannot offer herself to a partner fully. I know part of the problem is in the way I'm thinking about it, but I can't help but feel that way. It's completely debilitating. I'm also afraid to get too hopeful or excited that something will help because I don't know how I would deal with the disappointment when symptoms came back. It seems like it's too good to be true, to hope that I could one day feel normal again. I feel no pain during sex either -- only nerve pain, burning and itching that is unpredictable as far as I can tell, so for a long time I didn't even know if I truly did have vulvodynia.

Anyway, I had to rant and get that all out. I am really glad to have found an active forum, and I look forward to learning more about everyone's successes and individual situations. If anyone is from Canada, specifically the GTA and has any doctor recommendations or success stories, it would be greatly appreciated.

Thank you.

calidreaming999

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Re: New Here -- this is my story

Post  PainBlogger on Tue Apr 05, 2016 8:08 am

Thanks for sharing your story. Vulvodynia has so many different presentations that I think it's really useful that sufferers can read as many different case histories as possible.

My symptoms have not gone on as long as yours but started with a UTI and thrush at the same time. Nearly two years later and I am a lot better. I saw a gynaecologist (who was not very helpful), a women's health/specialist pelvic pain physiotherapist, and a pain management consultant (anaesthetist who specialises in chronic pain and the one I saw has an interest in pelvic pain). The physio and pain management doc were very helpful. I used lidocaine gel at night for eight weeks and that did help somewhat but I was still getting a lot pain both provoked and unprovoked. After trying pregabalin and amitriptyline with little success, I've been on duloxetine for the last six months or so and my pain flares have reduced significantly.

I've also cut out all fragranced products that have any contact with my skin down there. So no perfumed bath products, sanitary products or toilet paper. No fragranced detergent on any clothes or towels that I use for the lower half of my body. I've changed my diet to cut out tea, coffee, carbonated drinks, artificial sweeteners (as much as possible), and citrus fruits/juice. I was getting a lot of bladder/urethral pain as well as vulval pain.

I know the prospect of trying antidepressant drugs can be scary, but you can always discontinue taking them if the side effects are too much to tolerate.

The other things that have helped me are acupuncture (expensive but worth trying as the only side effects are the occasional small bruise) and dilator exercises as instructed by the physiotherapist to reduce pelvic floor muscle tension.

Even six months ago I felt very hopeless and that I'd be stuck forever not able to enjoy life and have a full relationship again with my husband. But I truly believe now that I can get at least 90% better, so well enough to do everything I want even if I have some low level pain from time to time. People do get better from this, it just can be a long road to find the combination of treatment that works. But don't give up looking for that combination.

PainBlogger

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Re: New Here -- this is my story

Post  emalita on Tue Apr 05, 2016 1:21 pm

I'm so sorry to hear that you have been in pain for 7 years. I've only had my pain for about 2 years now, even though looking back my lady bits were never 100% pain free. I can absolutely relate to the despair that comes with not being able to be intimate with a partner. I have been with my fiance for almost 12 years now, but I haven't been able to be truly intimate in about a year. Makes me feel like less of a woman Sad I've read articles about having to find new ways to be intimate when there is vulvar pain, but honestly just the thought of a sexual act causes discomfort because it only reminds me that I'm broken.

One of my OBGYNs prescribed me gabapentin in a compounded cream because she assumed the pain was nerve damage since nothing was ever showing up on a wet mount. I purchased the Rx but chose to never use it. I just know in my gut that this isn't a nerve issue for me. I won't write out my whole story here since I have it posted already, but I finally found a doctor who used a more advanced testing method to determine the health of my vaginal flora (he believes that vaginal secretions cause a great deal of vulvar pain). I am only on week three of my 4+ month treatment plan with him, but I'm trying to be hopeful.

If your pain is caused by damaged or overactive nerves, antidepressants and anticonvulsants seem to be the treatment of choice for most people. I had taken antidepressants as a kid for many years and hated that they made me feel numb emotionally. So I was extremely hesitant to use it, but if you decide to give it a try, see if you can get them compounded in a cream. That way it shouldn't have such a negative systemic impact.

emalita

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Re: New Here -- this is my story

Post  calidreaming999 on Wed Apr 06, 2016 1:35 am

Thank you guys for the support! I didn't realize that you could get the gabapentin as a compounded cream. I will ask about that when I go back to the Doctor on Thursday. I have struggled with some depression and anxiety issues in my life and have always managed without any anti depressants and I am just too afraid for how it would impact my moods. Not to mention from reading other experiences, it just seems like it has so many negative possible side effects. I appreciate both of you sharing your experiences with me. Looking back, I realize that I also had an undiagnosed UTI that traveled up to my kidneys because it was undiagnosed. I've also suffered from irregular periods for a very long time, though they've since regulated. I had another UTI this January. I wonder if my pelvic region is just extremely sensitive and all of these issues are working together to make things tougher for me.

I hope that we all stop suffering soon Sad

calidreaming999

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Re: New Here -- this is my story

Post  emalita on Wed Apr 06, 2016 2:53 am

UTIs are so horrible. Do some research on a supplement called D-Mannose. The pure form comes in a powder that you mix with water (tastes slightly sweet and bitter - super easy to take). I had found out about it when looking for natural UTI cures, and both the Functional Medicine Practitioner and Naturopath I met with recommended it. It only works on UTIs caused by E. coli bacteria, but that is the most common cause. There are actual studies done about its effectiveness on PubMed; so it's not just something only natural doctors use. I've read about people using it to cure UTIs as well as prevent them. Hopefully that can help keep you UTI free if that is still a concern of yours, and it would hopefully avoid the need for antibiotics, which I know got me into the situation I'm in now.

My Naturopath had recommended seed cycling to me to regulate my periods/hormones, which I've read some great success stories on. However, my cycles are super regular; so I didn't want to mess with the one normal thing I had in my life Smile

emalita

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Re: New Here -- this is my story

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