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Looking for a friend IRL; LA/OC

Tue Jul 18, 2017 2:51 am by crypticcalico

Hello!

I am hoping to find a friend in the LA/OC area that I can meet up with in person. I live in Long Beach, California and I am willing to drive a bit to meet. The only person that I've told about this is my doctor(s) and someone who couldn't wrap their brain around it. It would be nice to be able to talk to someone else who understands.

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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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Owner of vulvodyniSuppoet.com

Wed Jul 19, 2017 10:28 pm by LaurenVV

Hi, I started vulvodyniasupport.com at the age of 28.
I was a leader when there was no help, no forums etc.

As I went on my path, I found acupuncture, herbs and time helped me recover.
Most never do.

I met a wonderful woman named Hanna. She was a patient and became a support leader. She lived in FLoroda.

I have moved on from the support world and found a career that allowed
Me to bring my …

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anyone from southern california in here?

Tue Jul 12, 2011 6:43 pm by Melissa777

Hi Im just wondering if anyone here is from so cal- USA
I am in san diego- but from LA!!!

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Anyone else try Cold Laser therapy/ Low Level Laser Therapy for their vestibulodynia?

Tue Jul 04, 2017 9:01 am by Tired89

Hello everyone. It's been quite a long time since I've posted. I've been extremely depressed and bottling it all up. I've been seeing a pelvic floor therapist (it's only been 4 visits) for my provoked vestibulodynia and the only reason she can get inside of me to do myofascial release and to use the dilators is because I use BLT (benzocaine, lidocaine, tetracaine) ointment on my vestibule prior …

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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 …

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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 …

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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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