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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 …

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 …

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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 …

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 …

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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!
X

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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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