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Yesterday at 4:01 pm by jennyk2

» Pain management - what works for me
Yesterday at 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


Sex Drive?

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Sex Drive?

Post  chance13 on Tue May 06, 2014 7:35 pm

Hi, new member here. I've been suffering from vulvodynia for 2 years now. On top of the obvious reasons for not wanting to have sex as often, I have had like zero sex drive. I want to want sex! I do! And the moments that I do actually want to I can't stay wet long enough or something because when it's over I end up all swollen and sore for days Sad It's caused me to become depressed which is causing relationship problems, as you can imagine the lack of sex hasn't helped either. I don't feel sexy, and it's causing jealousy of all of the women that have awesome, non painful, perfect wet vaginas. Can anyone relate, or does anyone have any advice or has anyone tried anything that has helped them? I can use all the help I can get. #feelinghopeless No 

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Re: Sex Drive?

Post  Zbrown on Tue May 06, 2014 10:13 pm

I feel the same tbh and when I do feel in the mood I think what kills it is how swollen and raw feel afterwards :/ I find my burning is on the outside inside not too bad except for how tight it seems at the start lol but if any of use know any tips for afterwards do share Smile it lasts a couple of days afterwards. Getting a cool shower after certainly stops some irritation but tbhh I think anything that should feel normal or pleasurable to me almost just reacts almost like allergic reaction :/ is yours more generalised or one area ? Xo

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Re: Sex Drive?

Post  alessandria on Tue May 06, 2014 10:37 pm

This is still a big problem for me, even though I'm no longer in day-to-day pain. I used to have a crazy awesome libido before all of this began, and now I feel pretty much asexual. There was a really emotionally painful time for a while when I did break down crying just with things like seeing articles pop up on the news about health benefits of sex, or magazine articles about awesome new positions to try. I was extremely bitter about it all, and felt like less of a human because sex had become synonymous with the vivid memories of afterward, lying curled up in agony, feeling as if I had been gashed open with a thousand tiny razorblades. It's hard to forget, no matter how long ago it was. I'm trying to get back into the swing of it just small bits at a time, first becoming comfortable with finding people attractive again, watching movies with romance and sex scenes (these were unwatchable for me at my worst, but I'm working up to normalizing my brain to the idea of intimacy being good). My medical team is pretty sunny about this issue of when I do decide to start dating again, and had some good suggestions, mostly focusing on comfort levels. There are countless ways to be physically intimate without actually having PIV sex, and they're a good thing to focus on. Figure out what you can do that you find ENJOYABLE (not just "tolerable", sex is a two-way street and your partner most likely prefers things that mutually feel great). Some people with vulvodynia can enjoy oral sex; this was definitely not possible for me, but hopefully it is for you! Even in the absence of anything involving your vulva/vagina/clitoris, there are many intimate things you can do no matter what. Massages are a wonderful way for couples to bond, so are kissing and cuddling. Make sure to keep touching in ways that communicate love and intimacy, without making yourself feel endangered or uncomfortable. From what I understand, sex drive definitely does come back if you make sure to keep showing your subconscious mind (which is unfortunately in charge of arousal) that there is nothing to be afraid of.

Also, if you're on the pill, consider switching to a low hormone birth control method such as an IUD; the oral contraceptive pill causes loss of libido in a large subset of women! Finally, one major thing: do not rely on your own intrinsic wetness for sex. There should never, ever be shame in using lube, lots of women benefit from it -- doesn't matter how old, young, experienced, or inexperienced someone is! Slippery Stuff is one that is often recommended for our condition and doesn't tend to cause irritation.

Sending good thoughts your way!

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Re: Sex Drive?

Post  Zbrown on Tue May 06, 2014 10:45 pm

That's great advice Smile I hope to get the more or less constant burning under control as mine seems unprovoked well provoked by touch of clothing ect but more or less constant generalized some days less than others but I do understand iv only been going through this 6 months roughly but at the start I was petrafied for anything to go near there lately now the sex drive seems to be coming back but afterwards is pretty irritated, I stopped the pill cliest after being on it 3/4 years back in February with no significant change, what treatment are u taking currently xx

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Re: Sex Drive?

Post  alessandria on Wed May 07, 2014 12:22 am

I'm not on anything right now, just physical therapy exercises! Everyone is different, though, and certain meds are awesome for some types of vulvodynia. What are you on currently? Hopefully you can find a good way to get things under control soon!

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Re: Sex Drive?

Post  Zbrown on Wed May 07, 2014 7:08 am

I'm waiting on a follow up appointment so far, they told me to try acupuncture which has helped somewhat but only been 3 times and it seems to last a couple of days but the rawness from sitting around opening yeah still there. Tried no medication yet just that and all the no soaps down there or certain clothes ect, in with that I'm constantly exhausted it's so draining just awake but so tierd xx

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Re: Sex Drive?

Post  Alana3 on Wed May 07, 2014 1:07 pm

Wish I could be on a low hormone bcps even taking two a day I bleed like crazy. Watch that advice, not everyone is so lucky! I'm facing a hysterectomy since they cant get my bleeding under control.

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Re: Sex Drive?

Post  alessandria on Wed May 07, 2014 3:43 pm

Alana, I'm so sorry to hear that you're facing a hysterectomy. Sad The Mirena IUD is increasingly being used for endometriosis too and has shown some success in randomized clinical trials, but it sounds like they have tried a lot with you already and I assume it's not an option. I really hope they can figure out a way to get everything under control soon. You have a good point -- I will clarify that I meant minimal systemic dose of hormones (particularly estrogen) is probably beneficial for many people with vulvodynia, barring other medical conditions making it necessary, IF sexual function is the top concern. (If you follow Dr. Goldstein's thinking too, there's an entire subset of vestibulodynia that he hypothesizes is caused by the OCP -- it's necessary for that subset to get off of the pill in order to treat the condition). Especially if any of you have PCOS, CAH, endometriosis, or other endocrine disorder, you will need to be very careful in your choice of hormone therapy, and make sure your managing physician is aware of the conditions you are balancing.

Zbrown, I really would try to see a physio if you can, definitely press them on it at your follow-up appointment. Again, they do not help everyone because everyone is different, but there's evidence that they're most beneficial the earlier you start seeing them in vulvodynia. Hugs, it sounds like you're having a rough time Sad

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Re: Sex Drive?

Post  Alana3 on Wed May 07, 2014 4:38 pm

Mirena WAS discussed but I don't want to try it because it leads to "frequent infections" I get BV, yeast and UTI's I said hell no I don't want to try it. Plus it takes 6 months to a year to not have a period and I literally bled to the point I was almost hospitalized the other night. It was awful. Endo is wayyyy worse than vulvodynia in my opinion so I def want to get whatever taken care of ASAP. Sorry, def was NOT saying you weren't right just saying that sometimes you cant always adjust the pills and to check with doc first. I still bleed daily on 2 pills. But good lord the period I had the other day they thought I was miscarrying (although there was no baby to miscarry! haha). Yeah, Goldstine says that, but I just read the other day that there is no underlying evidence that once stopped the pill, that the pain goes away. I'll see if I can find it. I'm sure in some cases it could happen. I tried to get off and all I did was bleed and the pain never went away- granted because I was bleeding for a month after I went off the pill, I had to go back on a different one, so maybe it wasn't enough time! Everyone is different though and I hope something as easy as getting off the pill works for you!

Sexual function was a huge concern for me, but bleeding is good birth control too! haha ugh!

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Re: Sex Drive?

Post  Zbrown on Wed May 07, 2014 5:10 pm

Yeah I think tight muscles could be a factor also my acupuncture mentions a lot of my tight sacrum and tensing lol I had some trigger points in my bum cheek lol :/ so she released them now the burning isn't just as bad as started but still irritating I may ask for a referral to a womens physio I have been doing some nighty stretches for legs and sacrum so maybe that's keeping it to a minimum ATM but I do think I could do with pelvic floor being checked out xxx

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Re: Sex Drive?

Post  alessandria on Thu May 08, 2014 6:21 am

Alana3 wrote:Mirena WAS discussed but I don't want to try it because it leads to "frequent infections" I get BV, yeast and UTI's I said hell no I don't want to try it.  Plus it takes 6 months to a year to not have a period and I literally bled to the point I was almost hospitalized the other night.  It was awful.  Endo is wayyyy worse than vulvodynia in my opinion so I def want to get whatever taken care of ASAP.  Sorry, def was NOT saying you weren't right just saying that sometimes you cant always adjust the pills and to check with doc first.  I still bleed daily on 2 pills.  But good lord the period I had the other day they thought I was miscarrying (although there was no baby to miscarry! haha).  Yeah, Goldstine says that, but I just read the other day that there is no underlying evidence that once stopped the pill, that the pain goes away.  I'll see if I can find it.  I'm sure in some cases it could happen.  I tried to get off and all I did was bleed and the pain never went away- granted because I was bleeding for a month after I went off the pill, I had to go back on a different one, so maybe it wasn't enough time!  Everyone is different though and I hope something as easy as getting off the pill works for you!  

Sexual function was a huge concern for me, but bleeding is good birth control too! haha ugh!

Noooooo! That's so scary Sad I really hope they can figure out something that works for you, how long have you had to deal with endo? I can't even imagine bleeding that much, or dealing with that type of pain. Hopefully they have some option other than hysterectomy to get it all under control.

I think the good news is that the pill doesn't affect sexual function for everyone (a few people actually have improved sexual function on it, according to studies looking at this very issue!) It does cause loss of libido for a fair number of women, but still a minority, and it's a much smaller minority that actually have sexual dysfunction like anorgasmia or loss of lubrication. It's a possible factor, but I think the big thing for the majority of us is learning how to not fear sex or associate it with pain, since for women, it's really critically important to our sexual function to be able to actually relax (way more important than OCP or no OCP!) Going off the pill doesn't fix anything per se, it just stops provoking a vicious cycle of high SHBG with low free estradiol and free testosterone. It's never enough just in and of itself, but it can be helpful in combination with other therapy. And especially for cases that obviously are not caused by hormones (people who have had vulvodynia their whole lives, clear-cut vaginismus cases with hypertonic pelvic floor, etc), there's no reason to focus in on a OCP if it's working well otherwise. Smile

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Re: Sex Drive?

Post  alessandria on Thu May 08, 2014 6:23 am

Zbrown wrote:Yeah I think tight muscles could be a factor also my acupuncture mentions a lot of my tight sacrum and tensing lol I had some trigger points in my bum cheek lol :/ so she released them now the burning isn't just as bad as started but still irritating I may ask for a referral to a womens physio I have been doing some nighty stretches for legs and sacrum so maybe that's keeping it to a minimum ATM but I do think I could do with pelvic floor being checked out xxx

Definitely look into it! A good physio will point out all kinds of stuff you never would have thought of, like your core muscles and how you sit and how you breathe, and how all of these interrelate to the pelvic floor. It's pretty crazy stuff, but can be SO helpful. Worth a try! Smile

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maca powder smoothies..

Post  lavrose on Sun May 11, 2014 10:12 pm

I would suggest Maca Powder, (google it, its awesome) I started putting a tablespoon or two in my morning smoothie (frozen strawberries, bananas, and soy milk) and my sex drive went thru the roof. Its known to do this, its a fertility supplement aswell and is chock full of vitamins, minerals, amino acids and micro nutrients. Its a root from Peru, and people in Peru have been using it for years.
Before that, Ive always had problems with sex drive too.
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Re: Sex Drive?

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