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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


Did your doctor tell you that the birth control pill caused it?

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Did your doctor tell you that the birth control pill caused it?

Post  orangelight on Sat Apr 23, 2016 12:29 am

Hey Everyone,

I started having pain after taking yaz birth control pill for 5 months, that was 6 years ago. My doctor said Yaz was one of the worst offenders, and that the 'low estrogen' pills like it cause the most vestibulodynia. Apparently the estrogen in bcp is from horse urine and highly potent, and it shuts down your body's production of testosterone (by increasing sex hormone binding globulin which traps all your testosterone).

Has anyone's doctor mentioned testosterone? So far I have seen three doctors that say the burning pain on the outside of the hymen and behind the inner labia (vestibule) is caused by low testosterone. Why? Because this area is made of the same tissue in fetuses that becomes the penile urethra in men and is testosterone dependent tissue. I definitely have low testosterone when tested. Shocked

The other three doctors say that this is not the case, and that the entire vagina including the vestibule is estrogen dependent tissue, and I should use estrogen suppositories so support this. I definitely don't have low estrogen, if anything, I have too much showing up in my blood, urine, saliva. Exclamation

I am wondering if anyone else has met this contradiction before? Anyone tie your vestibulodynia or overall vulvodynia to hormones or birth control pills? Can anyone point me to resources that talk about the effect of estrogen or testosterone on the vaginal tissues? confused


orangelight

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Re: Did your doctor tell you that the birth control pill caused it?

Post  emalita on Sat Apr 23, 2016 3:11 pm

Here's a good article I had read in the past about the pill and its hormone destroying connection (don't worry, it's not written by Dr. Oz).

http://blog.doctoroz.com/oz-experts/when-taking-the-pill-takes-away-your-sex-life

Most articles say that testosterone is important for sexual desire...not much about its impact on vulvar tissue. However, the above article does reference hormonally mediated vestibulodynia due to low estrogen and testosterone. The below article states the following:

"Replacing testosterone to within the normal female levels (2.0 to 4.0 nmol/L) compared to normal male levels (10.0-50.0 nmol/L) can result in vastly improved levels of energy and sex drive. Testosterone replacement on its own does not always work if there is inadequate blood supply to the pelvic organs and this is mostly oestrogen related. Therefore, it is as important that the vulva and vagina are “well oestrogenised” before starting testosterone replacement therapy."

http://www.thesurreyparkclinic.co.uk/sexual-problems.php

So, unfortunately I guess you have to pick what you believe to be true and go with what works for you Smile However, I do agree with going with a bioidentical estrogen medication versus the horse urine ones!

Also, I wanted to mention that my current specialist who specialized in bioidentical hormone replacement therapy at the Mayo Clinic says that it doesn't matter what your estrogen levels are (mine were normal too). He said there is such a wide range of what is "normal", and women with vulvodynia have high estrogen demanding vaginas Shocked And he says that our vaginas are not properly using the nutrients (estrogen) it is getting, or it isn't getting an adequate amount.

emalita

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Re: Did your doctor tell you that the birth control pill caused it?

Post  natasha06 on Sat May 21, 2016 1:16 pm

Yes - after years of vulvar burning/pain and reoccurring yeast infections, I finally found a good gyno who believed that it was my Lo Estrin24 birth control that started this all for me. She said that the low estrogen in the brith control can cause your tissue to thin, exposing your nerves (which leads to the intense hypersensitive and pain). The reoccurring yeast infections could have been from this tissue problem as well (if the tissue isn't strong it can't support the good bacteria and right pH to avoid yeast infections) AND could have also lead to my overactive nerves because reoccurring yeast will obviously aggravate your skin. This was all really sad for me because I was super hesitant about going on the pill in the first place and wish I had known this was a potential side effect and could have stopped it early once I started having problems (was on the pill for about 6 months before this all started).

Your vaginal tissue needs estrogen to proliferate and therefore these low estrogen bc pills, while great for reducing cramps, really are dangerous!

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Re: Did your doctor tell you that the birth control pill caused it?

Post  A2015 on Mon Aug 29, 2016 6:44 pm

Hi orangelight,

Thanks for your post. It is very encouraging to read that several doctors you have seen have stated that the tissue of the vestibule is affected by hormonal birth control.

I've battled with so many specialists about the role hormonal birth control can have in causing vestibulodynia in some women. I'm now cured of my localised provoked vestibulodynia, but feel very strongly about what I went through not being heard. Have a read of my previous posts if you like, as they outline my experience with Microgynon causing Vestibulodynia for the 1.5 years I was on it. I believe this is also a relatively 'low dose' pill as you mention your doctor commented, and his view is that of some research from the US I've read up on online. Let me see if I can find some links for you, as I remember trying to understand the links between testosterone/estrogen levels and the vestibule myself!

Every specialist I saw over a period of 2-3 years denied any connection whatsoever between hormonal birth control and vulvodynia. However, several posts on his forum, as well as my own experience, suggest quite the opposite!

Only in my most recent check-up did my specialist tell me some very initial new research in the UK has confirmed there is a link. Let's hope more research is done, it is so very much needed.

For now, I would very much recommend coming off Yaz if you are still on it. I've had vestibulodynia twice now, and the first time I had it was cured by coming off the pill.

A2015

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Re: Did your doctor tell you that the birth control pill caused it?

Post  A2015 on Mon Aug 29, 2016 6:53 pm

Natasha06,

I'm so pleased that you finally found a gyno who has this knowledge.

I, too, suffered for a long time when I was on birth control with symptoms exactly as you describe, reoccuring infections too. All that your gyno says about low estrogen pills causing thinning tissues, exposing nerves, vulnerability to new infections, overactive nerves from those infections, makes complete sense to me, and is exactly as I suspected at the time (against all my doctor's opinions!). I finally took myself off the pill because I believed this was the case, and the nerves calmed completely down to normal, I couldn't believe how the tissues no longer felt so sore & fragile anymore. It is encouraging to see how the body can rebuild itself back to normal.

Like you say, I wish I had known this was a real potential side effect of the contraceptive pill. I discuss this with other women now and really feel we need to spread this to the medical profession as much as possible.

Anyone on this forum on the pill who is suffering with these symptoms, really try coming off it as your first treatment!

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Re: Did your doctor tell you that the birth control pill caused it?

Post  lindsey_taylor on Mon Aug 29, 2016 11:36 pm

I have been on birth control for years prior to developing this issue in 2014. Sad All of the doctors I have been to have been adamant that the issue isn't birth control. But these posts are making me feel otherwise. I have been taking Sprintec. Before that I was on Ortho Tri Cyclen Lo, and only switched to Sprintec because it is the cheaper Wal Mart brand. When I lived in England, I was put back on Ortho Tri Cyclen Lo because there was no Sprintec there. And then I was swapped to Microgestin FE because the doctor thought maybe my discharge and pain was caused by the triphasic birth control (Ortho Tri Cyclen Lo). Microgestin only made me irritable and break out, so once I got back here to the US (Georgia), I was placed back on Sprintec. I keep wondering if I should come off it altogether.

I will say I developed this issue at the same time I had a kidney stone and a UTI from the kidney stone, and then I got what I thought was a yeast infection, but the smear I had done that day did not show yeast at all, just white blood cells. I have been treated for infections, both bacterial and yeast, and have tried so many other things and remedies, etc., but have not come off of my birth control. I was recently diagnosed with provoked vulvodynia. I'm supposed to see a neurologist on October 6th to see if this is due to a trapped nerve.

All of this started 6 months after being placed back on Ortho Tri Cyclen Lo.

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Re: Did your doctor tell you that the birth control pill caused it?

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