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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 …

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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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New member

Sat Mar 18, 2017 7:37 pm by Lisa1627

Hi ladies. I am new to the forum. I have had what I think is vulvodynia caused from hsv 2. So not only do I have the burning vag but the constant feeling of being contagious. I can honestly say that I hate my life and myself right now. There are days when I think I would rather be dead. I tried the amitryptline and it helped but if it's only making my brain think I don't have pain then it's …

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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 …

Comments: 3

Recovered from Vulvodynia

Thu May 04, 2017 9:42 pm by chancesunny

Hey everyone,

Im a new member on this forum and wanted to share my story so I can help anyone who is feeling helpless. Maybe what worked for me can work for you. I'll try to make this short so you can go get better!

I had vulvodynia for about 3-4 years. In the beginning, it started with pain that I thought was just a yeast infection and then I thought it was a urinary tract infection or …

Comments: 2

New here, my story and looking for advice

Wed Apr 26, 2017 9:02 am by rachiecakes

Hi All!

I was really hoping to get some feedback from everyone here - it's very hard dealing with an issue like this because no one really understands what I'm going through!

Im 28 years old I've had interstitial cystitis for 3 years - but never an vaginal issues. About 6 months ago I got a yeast infection following a course of antibiotics - similarly I developed IC after a bad UTI. The itching …

Comments: 4

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: 2

Male visitor

Wed Jan 18, 2017 11:19 pm by outsider

Hello!

I am a 25 year old guy who has erectile dysfunction following an injury a few years ago. I am here because I think that men and women with sexual dysfunction could benefit from dating each other. My experience has been that women have lost interest when they found out that penetrative sex was not possible with me.
So I am interested in learning more about female sexual disorders. Do young …

Comments: 3

New Here: Question/My Story

Mon Apr 03, 2017 2:00 am by overit14

Hi everyone. I came across this site by Googling "vulvar pain support". I feel like my case is different than most I read about so I was wondering if anyone else here experiences this in the way that I do.

This started in 2012 and has happened off and on since. I get really, really red and it's very painful, swollen and burns. Sometimes it may be a little itchy, but mostly it just …

Comments: 6


Stop taking your birth control!

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Stop taking your birth control!

Post  anon99 on Mon Nov 11, 2013 3:21 am

I am 22 years old and had been suffering with vulvodynia for over a year. I had been on birth control since 16 years old and had no issues with it...or so I thought. After a year of pain and discomfort (constant burning, stinging, fissures) and after countless trips to 7+ doctors and specialists, I myself found the cure to my own vulvodynia. I decided I was going to go as "natural" as positive in hopes to making myself more healthy. Therefore, I stopped taking all medicine, but Loestrin 24 was the only medicine I had been taking daily. In a month's time, my pain has finally gone away. I consider myself very blessed and am so thankful to have cured my vulvodynia. Doctors were telling me that it was something I was just going to have to live with but I just couldn't accept that answer so I kept searching for a cure. I think it takes a few weeks for the hormone levels to reduce and for your vaginal area to reduce in irritation and inflammation, so be patient, give it a month's time, and let your body heal. I will never go back on hormonal birth control ever again. The year with vulvodynia greatly affected the person I am, both emotionally and physically. I will pray for everyone reading this that they will find their cure.

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Re: Stop taking your birth control!

Post  anon99 on Mon Nov 11, 2013 3:22 am

Also, I would like say I have been pain free for 4 months now

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Re: Stop taking your birth control!

Post  Neevi on Mon Nov 11, 2013 9:31 am

I have a gynaecologist appointment for weds morning to get overall diagnoses but i have thought about coming off the pill to see if that helps at all.
Happy to hear it worked for you, helps me keep positive about curing it!
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Re: Stop taking your birth control!

Post  Alana3 on Mon Nov 11, 2013 10:54 am

Please dont tell people to stop taking meds. I absolutely have to be on bcps for endo and it didnt cause my pain. Remember everyone is different but until you go to med school you shouldn't be giving that advice. I'm glad you're pain free but that would cause a whole different level of hell for me. You're lucky that you had such an easy way of getting cured. Also remember different bcps do different things. I had one that gave me constant yeast infections so I switched. But please keep in mind you have no idea why someone might be on the pill its not always for sex. I have terrible periods and pain. If im not on the pill forget living I'll be in bed for 2 weeks of every month. Vulvodynia doesn't seems terrible then. At least for me. And there are other alternatives too I had surgery and I'm good to go. But like I said I'm happy you're cured but keep in mind sometimes you cant simply go off meds that easily.

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Re: Stop taking your birth control!

Post  anon99 on Mon Nov 11, 2013 12:13 pm

Alana3-
I was on birth control for endo as well. I would rather have 3 weeks free of pain per month than pain everyday. But that's just my opinion. I think you missed the point of my post-- this forum is a place to share your story so that is what I have done. Also it wasn't an easy cure. I cried every day for 14 months because I was miserable and was having no luck with other treatments. I shared my story in hopes to possibly help another woman reading this forum; that they would talk to their doctor about the possibility of birth control being the cause and consider going off of it.

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Re: Stop taking your birth control!

Post  Alana3 on Mon Nov 11, 2013 12:20 pm

I just dont like hearing oh hey I got off bcps and you should too was my point. Like I said glad it worked for.you. and that its way broader than no more hormones. If you have endo how do you deal now? Most girls with endo cant ditch bc and be good, but again if you can great.

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Re: Stop taking your birth control!

Post  anon99 on Mon Nov 11, 2013 12:34 pm

Alana3-
For me, it was as simple as the hormones I was putting in my body were hurting me. I just wanted to share my personal story, find support, and support others. Best of luck to you.

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Re: Stop taking your birth control!

Post  Alana3 on Mon Nov 11, 2013 1:01 pm

Ok but that doesnt answer how you're managing your endo now. Did you get surgery? Im all for getting off the pill esp if theres a way to manage endo.

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Re: Stop taking your birth control!

Post  mary jane on Mon Nov 11, 2013 4:21 pm

it makes sense they don't work for everyone, I was on yasmin for only 3 mo. last year and one day I just woke up with sowllen vestibular glands!!!! My vulva was swollen as well, the glands l=felt like bulging veins, luckily then they dissapeared after taking naproxen !
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Re: Stop taking your birth control!

Post  Alana3 on Mon Nov 11, 2013 4:38 pm

And you're sure that's from bcps? Naproxen is an anti inflamatory so that makes sense it would go away. Also remember that different pills work for different people so the one that works for me may not be right for you. And vice versa. I'm just not a fan of hearing oh get off your pill and you'll feel better because it's not true for everyone. That was my point. Nothing more.

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Re: Stop taking your birth control!

Post  mary jane on Mon Nov 11, 2013 5:01 pm

yes, I'm sure it was from the birth control. It was my first time ever taking them and I did not do anything else to cause such bizarre symptoms.
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Re: Stop taking your birth control!

Post  mary jane on Mon Nov 11, 2013 5:02 pm

I was on them for 3 months only. I was fine after I stopped taking them
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Re: Stop taking your birth control!

Post  Alana3 on Mon Nov 11, 2013 5:16 pm

Yeah any medicine can cause weird stuff thats why theres so many I'm allergic to tylenol thats why I take advil

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Re: Stop taking your birth control!

Post  Fingerscrossed on Tue Nov 12, 2013 10:31 pm

I've been on birth control (in various forms) since I was 18 and I'm about to turn 24. I asked my doctor, a pelvic pain specialist in Louisville, KY, about stopping birth control and he disagrees with the idea of stopping. In his mind, the pills help you to not have pain because they control your cycle. I'm actually on continuous birth control now and don't think it's made things worse. I have been scheduled for a vestibulectomy on Dec 17. If that doesn't work, I'll probably try getting off all my pills. I think my nerves are the issue, though I cannot compare sex on pills vs. off them. I've been on birth control for as long as I've been sexually active.

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Re: Stop taking your birth control!

Post  Alana3 on Tue Nov 12, 2013 10:56 pm

I lived in lex for four years if its nerves the vestibulectomy will help

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Re: Stop taking your birth control!

Post  A2015 on Wed Jun 03, 2015 8:52 am

@anon99, your experience is almost identical to what I experienced in 2012.
Was on the Pill (Microgynon), suffered for over a year with Vestibulitis, countless trips to doctors none of whom suggested coming off the Pill. In desperation, I did, and within a month, all my symptoms had gone away completely.

However, in 2015 (having not been on hormonal birth control since, as I also swore I would never go on it ever again), I got a Yeast & BV infection and it has triggered Vestibulitis just as it was before.

I just wanted to comment to advise being gentle with your body, as I thought I would never have any problems again (I was so completely cured) and thought I was resilient to infections/VVS returning. I never had to question why coming off the Pill worked, as I assumed it was hormonal, but this time, it doesn't appear to be. Be well.

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Re: Stop taking your birth control!

Post  sailor_moon on Fri Jun 05, 2015 1:15 am

All my problems started when I came OFF birth control...and when I went back on it to see if it would fix me it didn't. I think the pill has screwed up my hormones to the extreme that 2 years later I still only get a period once every 3 months.
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Re: Stop taking your birth control!

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