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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 …

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Newly diagnosed

Tue Oct 10, 2017 8:37 pm by Brevispink

Hello everyone. I have recently been diagnosed with unprovoked vulvodynia and would really appreciate some advice and support. I have had a chronic urine infection for 16 months and was on antibiotics for 9 of those months. I have been very uncomfortable for the entire time, but now I have absolutely unbearable stinging and burning all day with itching too. The infection has just about gone, …

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Recent "Poke" Pain - So Confused/Losing My Mind

Thu Oct 12, 2017 9:26 am by kelseybeth23

Long Story, but I am losing my mind and getting really depressed, so if I tell the full story maybe someone can help me.

Back in August I started to get an itch down there. Normally, in the past, when this would happen, I would change the way I wore my clothes, take more baths instead of showers, and use Monistat. This time, after about two weeks of no relief, I started to get concerned. I was …

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Does anyone else experience this?

Sat Oct 14, 2017 5:21 pm by Angelmegs

Hi— im new here. Im incredibly desperate so if anyone has any suggestions i would greatly appreciate it. Im a 20 year old female with vulvodynia and vaginismus. I was on the birth control pill (junel fe lo estrin) from age 13-18 because of severe menstrual pain. I used the xulane patch for a few months when i was 18 but eventually stopped BC altogether because it interferes with my med for …

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Post Full Vestibulectomy - 5 Years Later - Please Read

Tue May 02, 2017 6:18 pm by jen007

Hi All,

It's been awhile since I've written a new topic on the forum. Wondering if any of the same ladies are still here. I've come back to update you all on my post vestibulectomy results. I can't remember if I've done an update on my current state, so forgive me if this is repeated information... I can't remember how to view my old posts! Anyway, let me get on with my update.

For 4 years post …

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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 …

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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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Birth control pills can cause vestibulitis

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Birth control pills can cause vestibulitis

Post  Boulderfemme on Sat Jun 09, 2012 6:07 am

I went on Yasmin to mitigate symptoms of perimenopause. I'm 49. I was sexually inactive so didn't discover I had developed vulvar vestibulitis until about 8 months later, the next time I had sex. Researched it online, read the forums, panicked... went back to my gyno, who ran the usual drill: 1) stop using irritating products. 2) run lab culture (showed nothing). 3) try steroid cream (made irritation worse). 4) estrogen cream (did nothing.) Never did 2 different docs suggest that the Pill could be the cause. So, in an effort to rule it out, I went off the Yasmin. The vestibulitis was gone within a month, along with my other symptoms of vaginal irritation (a persistent, vague itch). If you're on any birth control pill, and you haven't tried going off it to see if your symptoms improve, GO OFF THE PILL. It was so simple I was kicking myself. Other good news was, my perimenopausal problems didn't return (the time spent on the Pill did act as a "re-set" to get mood issues and periods back to normal), and I didn't realize that the Pill also was causing crushing depression-- and that lifted, too. Please spread the word! I'm amazed at the posters who talk about being on the pill who haven't tried going off of it.

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Re: Birth control pills can cause vestibulitis

Post  SisterAwake on Tue Aug 21, 2012 8:47 pm

It's so simple to say "go off the pill" but what about for those of us who can't? I had to go on the pill because I have fibromyalgia and the ONLY thing that stopped the excruciating pain affraid I had during my period was to go on the pill. If I go off, I will be bedridden for days again during my period.
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Re: Birth control pills can cause vestibulitis

Post  JemimaSurrender on Wed Aug 22, 2012 11:14 am

This is pretty much exactly what happened to me.

I had these symptoms for around 8 months when one gyno suggested I stopped the pill. My symptoms vaninshed within a couple of weeks and I was perfectly normal for a good 5 months. Sadly they returned with a vengeance and I went another 18 months before having 3 months off.

The pill definitely plays a massive role in this for some people I'm sure, but I've been off all birth control for about 13 months now and am still in pain.


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Re: Birth control pills can cause vestibulitis

Post  mars215 on Fri Aug 24, 2012 12:48 am

Hi there...

What birth control were you on? I'm curious... because I know that in the US, Yaz has gotten into a lot trouble for making women sick...

Mars

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Re: Birth control pills can cause vestibulitis

Post  JemimaSurrender on Fri Aug 24, 2012 12:40 pm

Is that for meee? If so, I was on Microgynon. I tried different strengths of it that had different levels of estrogen which made no difference. I've also tried Cerazette and another one beginning with L that I can't remember!

Has anyone found a good one they can use that doesn't make their symptoms worse, or can even make them better?

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Re: Birth control pills can cause vestibulitis

Post  SisterAwake on Mon Aug 27, 2012 8:09 pm

I take Tri Cyclen and it works very well.
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Re: Birth control pills can cause vestibulitis

Post  Aussie on Mon Aug 27, 2012 11:29 pm

I am way better off the pill. I was on it due to painful irregular periods (now diagnosed as pcos) I went off the pill to get pregnant and found that sex became way, way less painful (daily pain did not change).

I will never go on the pill again, it does not fix problems just masks them!!!! Why would anyone want to suppress a bodys natural function, your shutting down your overies for gods sake, it's beyond me why so many people are on this stuff without knowing the function behind it or without trying other methods.. I used acupuncture to help with the painful periods - sisterawake - give it ago. I found it helped a lot, I have a few friends over on the ICNetwork forum with fibriomyalgia so I am sorry to hear you suffer with that. .

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To sister awake about bad periods

Post  Rainy Day on Mon Aug 27, 2012 11:40 pm

I also had periods so bad that I would puke every time I got it. Not sure if you had a child yet, but that gets way better after having a child. I used to take about 15 ibuprofen a day just to function during my period...and now I take maybe 2 pills during the 1st day of my period. And, my little boy is 2 1/2...and it still isn't bad.

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Re: Birth control pills can cause vestibulitis

Post  kalinikta77 on Mon Nov 05, 2012 2:58 am

I'm a 21-year-old with provoked localized vestobulodynia, a form of vulvodynia. I was on beyaz, which is associated with my condition, so she took me off of it. I have only has sex once since I stopped using it-about a week after I stopped taking the pill. The problem was still there. I haven't given up hope that it will help-after all, a week isn't a very long time; however, my birth control is only one of several possible causes. So while quitting the pill may help, don't freak out and doom yourself if it doesn't. There's more possibilities and treatment available.

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Re: Birth control pills can cause vestibulitis

Post  cba321 on Mon Nov 05, 2012 10:47 am

I have provoked vestibuldynia or vulva vestibulitis and I had it before ever taking the pill, so in my case it wasn't the cause, and going on it and now off it made little to no difference. The pill can irritated the skin of the vulva and that being gone since stopping the pill has helped me to a limited extent. In saying that other things have helped! Everyone is so different yet with similar symptoms...

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Re: Birth control pills can cause vestibulitis

Post  Alana3 on Mon Nov 05, 2012 6:32 pm

Yeah, mine started about the time I started Yaz. Unfortunately, I can't prove it started. But I can't get off birth control. I have since changed to Mircette, and still have problems, but my periods are way too bad to get off. Were talking bleeding for 2 weeks every 2 weeks, I was having 24 periods in a year off the pill. It was terrible. I really wish they would just give me a hysterectomy and be done with it (I don't want kids after what I have been thru I do NOT want my body changing again too much of a risk). ugh.

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Microgynon 30mg for 7 years have vulvodynia

Post  Amylouise on Mon Nov 26, 2012 1:20 am

When I was 16years old I was diagnosed with polysystic ovaries which are cysts in my ovaries rather than eggs due to them being larger than eggs it was agony, i also got diagnosed with haemophilia which is a bleeding disorder where my blood does not clot this combination made periods impossible.

Therefore I was referred to a specialist family clinic where a lady who specialised in the pill put me on the microgynon permanently I am still currently using it and was told at the time I would not require a break at all throughout this time. I had rare break through bleeding and my periods eventually stopped.

I then got into a long term relationship in which I discovered I couldn't cope with the agony of sex I went to a gynaecologist in Cambridge uk who diagnosed me of vulvodynia they said mine was quite bad as it affecting all around the opening and inside.

I only recently made the connection on here of the long term use of my pill being possible for the pain I experience inside.

I have no idea what to do I am 23 and have been in a 5year relationship in which we haven't had sex for 3.5 years. I can't come off the pill but I fear it will worsen if I don't.

Many thanks for reading.

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Isn't listed in the side effects

Post  painfulvag on Thu Nov 29, 2012 6:40 pm

When I first started birth control, I was taking tri-cyclen or the generic. No problem. I switched to Loestrin a few years ago, and if I remember correctly it was around the time the pain during sex started (that's the only time I am in severe pain). However, I was off the Loestrin for about a month or two for unrelated reasons about a year or so ago, with no relief. Do you think the Loestrin could still be the culprit and I just didn't give it enough time? I wish I could remember more accurately when I switched... Argh

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Re: Birth control pills can cause vestibulitis

Post  A2015 on Thu Aug 13, 2015 2:45 pm

I wanted to post about my story to reiterate that there are DEFINITELY cases where VVS is caused by hormonal contraceptives, even when not immediately obvious.
I want to desperately encourage anyone who has VVS to come off hormonal contraceptives if possible.

In 2012, I had unprotected sex and took the morning after pill. I developed vestibule redness/soreness/itchiness. The clinic confirmed a Yeast & BV infection, explaining that this was common after sex (though I had never had any vaginal problems for years before). They also put me on the Pill (Microgynon 30). The infections cleared (tested negative) but my symptoms remained constant.

My symptoms extended beyond vestibule pain. I also had itchiness, redness & subtle inflammation of the whole vestibule (localised to this area), my vestibule skin started to tear during sex, get more inflammed & very regularly develop new infections (Yeast/Bacterial). I also had a lot of discomfort/itchiness in & around my anus.

Firstly, this made me question whether I had VVS because I didn't just have pain of the vestibule, as I kept getting infections too (now I understand that women with VVS are often simply more prone to infections & discomfort of the whole area).
Secondly, I assumed my VVS must have been caused by the infections (proliferation of nerves in the vestibule after infection), because the symptoms I had felt like they were permanent, that the skin itself was not normal anymore & seemed irreparable.

I didn't come off the Pill until mid 2013, when I had read more info about a link. I felt I should just come off it in case it might have been making anything worse.

The reality was (by my complete surprise and total elation) that within a month, my vestibule returned to completely normal and ALL other related symptoms also disappeared — the anal discomfort/itchiness & bring prone to developing infections.

I hadn't thought the Pill could be causing my VVS, because I had developed the infections before I started the Pill (I didn't consider at the time that just before I got the infections, I had taken the morning after pill which is a huge dose of progesterone). I also had no understanding of hormones & no idea how they could cause pain in a specific area of the body like this! Every doctor I asked said there was no way the Pill was relevant, which made me have little hope.

I believe there are 2 main causes for VVS — hormonal or a response to an infection. But there can be an overlap, and I didn't consider the Pill could be the cause because I kept getting the infections. But I was mistaken (and so were over 10 doctors & specialists).

I really hope this can help any women suffering.

As a side point, unfortunately, after being perfectly normal for 18 months, this year I developed infections (no hormones involved) and VVS has fully returned. I feel that my body has learned how it responded to infections when I was on the Pill, and now the nerves are irritated again = VVS Sad

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Re: Birth control pills can cause vestibulitis

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