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» What's next?
Tue Apr 24, 2018 4:01 pm by jennyk2

» Pain management - what works for me
Tue Apr 24, 2018 3:41 pm by Jo44

» Share your Vulvodynia Story and become a member of the Global Anthology!
Mon Apr 23, 2018 10:44 pm by smyerskelley

» If it helps anyone else
Mon Apr 23, 2018 6:36 pm by VH7797

» Cured, cyst in foot
Mon Apr 23, 2018 4:06 pm by Guest

» HELP!! Topical cream?
Sun Apr 22, 2018 5:44 pm by emalita

» The pain CAN get better - What's worked for me
Sun Apr 22, 2018 5:32 pm by emalita

» Custom made leggings?
Sun Apr 22, 2018 4:52 am by CatJones

» Please tell me this can get better
Sun Apr 15, 2018 11:31 am by amf329

I'M NEW - Do I listen to my gyno who I feel has it wrong?

Fri Mar 09, 2018 6:17 pm by Tunes25

Hello!

I am a 25 year old woman and wanted to share my story here as I feel frustrated by the suggestions of my gyno and am hoping for some advice.

To give the context for this: in September 2016 I moved in with my long term boyfriend after living abroad a year and (nearly) abstaining from sex. Within a few weeks I had got a yeast infection which I treated myself successfully, but then 2 weeks …

Comments: 4

I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone

Mon Mar 12, 2018 4:33 pm by totallycured

Hi,

Every so often I'm reminded of the constant, persistent, horrible pain I was in two decades ago, and I reach out to try to help others who are suffering. If someone had offered me a solution during that terrible time, I'd have jumped at it. I hope this helps someone.

Yes, I did have terrible vulvodynia. It felt like someone poured acid all over my vulva. My doctor confirmed it and was …

Comments: 3

Hi Im from Australia :)

Sat Jan 08, 2011 1:08 am by emma

Hi girls... I live in Australia.
I am currently undergoing a new treatment for vulvodynia. Just wondering if anyone else here has tried it. It's Endep in the form of cream to apply directly on the area. I dont know if anyone else has tried this but so far evidently it has had a 50% success rate.
Anyway i feel at a loss. This new treatment is exciting but at the same time i just dont feel like …

Comments: 35

Somebody please help me...

Fri Nov 24, 2017 8:05 am by Andlag

Hey everyone,

since I started being sexually active i often experienced burning in my vagina which was often worse during sex /around the time of my period or when using lubricants. I was never able to use tampons because the one time i tried putting them in it felt like acid was poured on my skin. Fast forward to 2 months ago when I got a UTI and an allergic reaction in my vagina. I thought it …

Comments: 14

Lidocaine with condoms?

Wed Mar 21, 2018 10:44 pm by AEM1

Hi everyone! My doctor just prescribed me a topical lidocaine to administer before sex, but I forgot to ask if it is okay to use with condoms. Has anyone else used this before and know it is safe to use with condoms? Thanks! Very Happy
Unrelated, but I just started Lyrica a few weeks ago...no changes yet, but I'm hopeful something will come out of it. 3 years with vulvodynia and unable to have sex …

Comments: 1

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: 23

Recently Diagnosed which has motivated my research study

Tue Mar 06, 2018 4:54 pm by ebclose2free

Hi everyone,

My name is Eliza Barach and I was diagnosed with vulvodynia in October of 2017. I'm also PhD student at the State University of New York at Albany. I work several professors at SUNY, but one in particular, Dr. Mitch Earleywine researches marijuana and its possible efficacy as an alternative treatment. Our previous examined cannabis and symptoms of PMS/PMDD and found that women …

Comments: 0

MAY HAVE FOUND A CURE- PLEASE READ

Thu Feb 15, 2018 10:04 pm by infinitelywondering

Dear all,

Today has been the day I've been waiting for. The day something FINALLY makes sense.
I've been told countless times that I've got nerve damage or a muscular condition, yet none of the specific treatments have helped me. My GP suggested attacking this from a different angle so referred me to a dermatologist specialist


after having a vestibulectomy with no success, I decided to visit …

Comments: 3

New and desperate for advice

Sat Mar 03, 2018 2:37 pm by srbry

Hi everyone,

I'm new here and was told to find a support group because this is all getting a bit much really...

I lost my virginity when I was 18 and it hurt - that was normal. Loads of women had told me that it hurt so that was fine I didn't question that. I was with the same guy for a couple of months and each time after that it was uncomfortable and not great. I didn't tell him because I …

Comments: 3


Views on Birth Control pill

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Views on Birth Control pill

Post  Jo44 on Thu Mar 19, 2015 9:17 am

Hi

I am seriously thinking about coming off my Birth Control pills and wondered if others had done this and whether they found it helpe? I'm currently on the combined pill.

Looking at my journal the previous two months, I've been better whilst on my period but the day I restart it the pain comes back.

I'd really appreciate people sharing their experiences. I am been on it for the past 16 yrs since the birth of my son. My VV was diagnosed in February and have had it since a UTI in November last year followed by a thrush episode!

Many thanks

Jo xx

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Re: Views on Birth Control pill

Post  x_chelss@live.com on Thu Mar 19, 2015 11:51 am

Hi, I've been on microgynon birth control since I was 15 and the problems started about a year after I went on the pill. I'm now 20. I am also thinking of coming off the pill because whenever I have my weeks break everything seems to settle down.

I had a parcial vestibulectomy on the 28th January 2015 and so far everything seems to have gone and the surgery has worked. The only reason I wish to come off the pill is because I think the hormones which the pill contains caused this problem in the first place and do not want it returning x


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Birth control pills

Post  Jo44 on Thu Mar 19, 2015 1:27 pm

Hi

That's the one I'm on too! I've read stories on here where women have come off the pill and it's really helped them. Like you my symptoms are better when I'm on my period, but literally for the past two months, as soon as I've started it again on the Saturday, by that evening the soreness in the vestibule area is back again!

Not sure what my Gynacologist will think, but as I don't see him again until early May, I'm going to see what happens anyway. If it doesnt help I can always restart it again.

Thanks for your reply. X

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Re: Views on Birth Control pill

Post  x_chelss@live.com on Thu Mar 19, 2015 3:21 pm

It can't do any harm to come off the birth control and just see how you go, like you said you can always start back on the pill again. They do say the pill has nothing to do with vulvodynia but vulvodynia is all based on nerve endings and hormone control and considering the pill controls your hormones I think there's something weird about that whole theory especially when the majority of women are on the pill also.

But I will be coming off the pill soon, I will probably finish my pack and then consider the coil which has no hormones

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Re: Views on Birth Control pill

Post  Redhead23 on Tue Apr 21, 2015 11:29 am

Ive been on the pills and the implant. Despite my doctor saying it wasn't connected I definitely noticed by stinging and burning pain was a loy worse on them. Even though my periods could use them because they're terrible right now, I'd rather deal than be in any more agony in that respect.

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Re: Views on Birth Control pill

Post  x_chelss@live.com on Tue Apr 21, 2015 11:39 pm

I see a vulvodynia specialist and he's told me the pill isn't related to vulvodynia, but I think that isn't true. As I've stopped taking my pill and I feel so much better already!

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Re: Views on Birth Control pill

Post  A2015 on Sat May 23, 2015 8:22 pm

Hi Jo44,

Just wanted to highly recommend coming off the Pill.

In 2012, I got a Thrush & BV infection after taking the morning after pill & was put on the Pill (Microgynon) on the same day I was treated for the infections. I suffered with VV for 1.5 years until I came off the Pill. All my VV symptoms completely disappeared within weeks, like a miracle. Unfortunately, after being perfectly normal for the last year and a half, this year I developed Thrush & BV infection again (no hormones involved) and VV has fully returned, so I have got to find a way to get rid of it again.

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Re: Views on Birth Control pill

Post  sailor_moon on Sun May 24, 2015 4:09 am

All my problems started when I came off birth control. I stopped the pill and 3-4 weeks later this shit started! I went back on the pill for a few months and it make absolutely no difference whether I was on it or off it. So I just decided to stay off it for good. I strongly believe it has caused all my problems.

It has taken almost 2 years to find out I have severe hormone problems. Low estrogen, borderlining between menstruation and menopause, very low progesterone and 2 ultrasounds and a blood test confirmed I have PCOS. When I came off the pill I got the vulvodynia first, then started vomiting every single day, it was like I had constant morning sickness. Constant fatigue (still have that, nausea, migraines ect. I got an endoscopy done that shows I have chronic gastritis....A problem you can get from low estrogen! Gastritis is chronic inflammation of the stomach. ..so I believe it is all linked considering my biopsy downstairs came back with only non specific inflammation.

I have an operation at the end of June (fingers crossed! ! They had me in theatre 2 weeks ago and had to cancel due to emergency) to see if there are any internal causes for my problems such as masses, endometriosis, blocked fallopian tubes ect. Sometimes endo or a mass can sit on nerves down there and cause vulvodynia.

I wish I never went on birth control. ..I believe it caused everything that it wrong with me.
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Re: Views on Birth Control pill

Post  kvelipuri on Thu May 28, 2015 6:50 pm

You might want to check out my other post today. Basically I saw a vestibulitis specialist who advised going off the pill and using an estrogen/testosterone compound. I was told that one will not work without the other, and it will still take 6-8 weeks to get some relief.

I think this is one of the standard treatments that Dr. Andrew Goldstein gives, based on what I've read on other forums. Sounds like he is quite expensive (>$1000), and I got the same advice after a very thorough and professional exam with a different specialist for much less - $350 for the first appointment with Lucy Treene in DC. I would highly recommend her.

Not sure if this would suit your personal circumstances, but I hope the info is helpful.

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Re: Views on Birth Control pill

Post  A2015 on Thu Jul 09, 2015 11:34 pm

Hi kvelipuri,

I'm just wondering if you've experienced relief since your last post above?

I had symptoms much like yours when I was on the Pill from 2012-13, until I came off it and had a complete recovery. I didn't have to apply an estrogen/testosterone compound but as you say, this is often the standard treatment to accompany coming off the Pill.

This year I developed VVS again without any hormones involved (just following a new episode of Thrush & bacterial infection) which is so upsetting.

I'm just wondering whether you're healing, as it would give further evidence that the Pill really can be the cause (and therefore the key to curing this) for many women.

I hope you are well,
A2015

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Re: Views on Birth Control pill

Post  zoeycaul on Sat Jul 11, 2015 2:27 am

I'm trying the ET gel soon, too. Another doc in DC prescribed it - not nearly as expensive as Goldstein and accepts insurance. I did buy his book, though. I just can't justify spending $1400+ without first trying other qualified doctors. I'm interested to see how the ET gel goes, as I have this coupled with PFD.

As for the pill, I've had a urologist, an OBGYN, and a physiotherapist all HIGHLY recommend that I go off the pill ASAP. I'll probably butcher this, but essentially, hormonal BCs can cause your body to stop making its own estrogen, and estrogen also contributes in some part to creating testosterone. Without both, you'll have a drier vagina, with whiter skin that looks more menopausal. It can shrink the labia minora and the clitoris without enough hormones. And by extension, these items make sex and the vulva in general more prone to pain.

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Re: Views on Birth Control pill

Post  kvelipuri on Thu Jul 16, 2015 4:44 am

Hi A2015,

I'm not sure if what I can report is entirely useful or not. In response to your question about whether I've been feeling any better, the answer is yes and no. I'm just not sure yet what conclusions should be drawn from my experience.

I've been using the estrogen compound daily. I haven't seen exactly linear improvement, but I'm definitely not feeling as terrible as the first outbreak, which was an all-consuming and distracting burning/sharp pain. I had a really good, 2-week long period leading up to and during my last period. Now about two weeks after my period I've been feeling a little rough; irritation and little pinpricks while walking that make it just difficult enough to spend a whole weekend day out walking the city, if that makes sense. I keep telling myself that at least it's not so bad as to distract me while I'm seated doing my work during the workweek. But I was definitely hoping for a bit more improvement by now. Then again, it has not yet been 8 weeks since I started this treatment.

I'm really sorry to hear you've had another outbreak after having gotten rid of the last one. What treatment of any are you trying now? I hope you feel better soon.

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Re: Views on Birth Control pill

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