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I'm new to this forum and would love some advice! :)

Tue Jun 05, 2018 4:13 am by anikita

Hi lovely gals!

I'm honestly hoping to get any bit of advice anyone might have to offer. I go from bouts of sobbing hysterically in my boyfriend's arms to feeling confident that I can beat this.

I haven't been actually diagnosed with vulvodynia but EVERYTHING under the sun has come back negative. I started having sex 4 years ago after starting Lo Loestrin, with my first and current boyfriend …

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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 …

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Gabapentin Gel. or other topical creams

Thu May 10, 2018 9:43 am by Rosie21

Hi I have been suffering for some years with this abominable pain. I have tried most of the systemic drugs , I asked specialists and Doctors if I could at least try a topical treatment but because this requires a special prescription have been refused Has anybody had a chance of trying these? Thank you I will try to put a link on to some of the research into Gabapentin Gel. Thanks.

Comments: 1

What has been helping ME (much less pain over time!!)

Wed May 16, 2018 3:43 am by leoscc

Hello everyone! I vanished for quite some time as my life became consumed by not only this but other daily responsibilities as well. Shortly after my diagnosis, my boyfriend f 3 years left me as he did not want to deal with this. It left me broken for a while but also gave me time to figure out what the heck was going on. So, I will write out a quick list of my symptoms and what helped me.

1. I …

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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: 4

Condoms Less Painful?

Mon May 07, 2018 3:35 am by stillinpain

I'm just curious, has anyone found using condoms to be less abrasive to the skin than without? I just got off birth control and haven't stretched myself out enough post surgery to try sex yet, but when I do I am wondering how trying it with condoms with affect the sensation. I feel like for me the skin to skin sensation creates pain, not just at my entrance but internally, too, since I also have …

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Will there be an end?

Fri Apr 27, 2018 12:06 am by Krista2828

I go in and out of being okay and not being okay with this condition. I question often why me? I am a problem solver by nature and I feel so defeated that after tons of research and trial and error and doctors and tears that there still is no answer.

I am in my 20's.. it shouldn't be this way.

Id love to know what all has worked! I am willing to try anything to get my life back. I am curious …

Comments: 6

you can be healed so easy and quite fast.

Thu Apr 26, 2018 11:46 pm by pussycat

Hello everyone,
i am new to this forum. I wanted to share my personal "journey" with V with you and to give you a real hope you can be totally healed/recovered from V. Many years ago i was struck with V, it was painful and got worst and worst, eventually i could not sit, could not stand, could not walk, could not swim in a swimming pool anymore. I was becoming bedridden, it frightened …

Comments: 4

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


Can't believe it!

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Can't believe it!

Post  maudie on Fri Sep 28, 2012 10:47 pm

I am 49, and recently diagnosed with vulvodynia. Due to divorce and an industrial accident, I was non-sexual for two years. When I started up again--ow! But I thought, maybe I was getting drier (peri-menopausal) and also was just not used to sex anymore, was on painkillers; it wasn't very good sex on the guy's part, but I stuck with it, and it quickly went away. Then, after a year with this man, I had another year of no sexual activity. I have to take painkillers because of the accident, so its tough to get any kind of orgasm, on my own or with someone else! Lately, I tried sex again with an understanding guy. We tried different lubes, even plain old vaseline, different positions, but it felt my insides were being pierced with thousands of tiny knives. Screaming pain! Tried several times, and the pain was worse, if possible. I became so inflamed, particularly my perineum, it hurt to sit, pee, drive--all the time. I also had knifelike pain at the very top of my vagina, above the clitoris and into the hairline. There is a goodish fat-pad there, but it felt ready to tear apart if I wasn't careful.

Coincidentally, I went to the Dr. for a routine pap (several years overdue). She could not get the speculum in me. Then, I got my diagnosis, and different gels/creams to try, including one for lichenosis. Now I can sit, and it seems my whole lower area has calmed down, and I'm using the pain gel/ointment less. But I don't dare try the whole sex thing, not yet! I'm not cured, although I feel more normal

Thanks to reading your website for many months, I've been practicing loosening my scrunched up lower muscles, back and belly and all between. I never knew I kept so much tension there! I also, with help from my Dr., got better control of my severe and constant constipation (caused by those necessary painkillers) some of which was so painful (stretched and torn perineum)(landing me in the ER just to get the poop out, brrr), that I'm sure it started this rise in my nerve responses.

But now-- I know why my husband of 20 yrs' very small penis seemed quite enough for me. Why explicit pornography made me shudder and wonder-- "how can she do 4 guys in a row, so big, she looks so dry, etc". Why I knew in my teens I could never be a prostitute simply because of the pain! Why I knew bigger could never be better!

I told my younger sister about this. And she was astounded. She is married, has a 6 year old, and has had these same problems since the birth! Her doctor, a woman, just pooh-poohed it, saying, "well, maybe we can do something with dilators" and went on to another subject. So my sister thought she was alone in her pain, and was very surprised by the info I passed on. I am appalled! In 2012! To treat a married woman with a previously lusty sex life so --recklessly. By a woman gyn!

maudie

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Need to ask!

Post  maudie on Tue Oct 02, 2012 8:23 pm

Forgot to ask-- does anybody have concurrent urological symptoms, like: sometimes feels a hesitancy to go, sometimes the urinary tract seems so inflamed! but I get tested and no infection. Urgent need to go often, but no apparent infection. What do you do for this, for comfort or cure?

I read a post here about women using their muscles wrong when peeing, pushing instead of relaxing? I remember being toilet trained to urinate, me crying on the pot, my mom screaming at me to PUSH!!!-- and being completely at a loss as to what I needed to do. It was always PUSH! Finally I pushed it (urine) out. So I've always pushed, and ,man, was I a strong, fast urinator! Also, as a little girl, my perineum ripped a tiny bit several times, for no apparent reason. I'm just all out of sorts in my whosit-whatsits and it seems so complicated. Isn't there just one answer to all this?

And do hormone suppositories help with vulvodynia and vestibulitis

maudie

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Re: Can't believe it!

Post  LillyK on Wed Oct 03, 2012 5:00 am

I have has some trouble with pushing when peeing too and my aunt has told me that my mother used to tell me to PUSH all the time when I was potty training. Apparently it was so bad that I was in tears because my mom wanted me to go at her will, not mine. My aunt even tried to talk to her about it but my mom was adamant. I actually think this may be part of a cause of my V problem! So I can truly relate. I have learned that double voiding really helps me though. And trying to relax and not push.

FWIW, acupuncture has helped me tremendously and so has eating a low acid/anti-inflammation diet. I hope you find something that works really well for you! Hang in there!

LillyK

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Re: Can't believe it!

Post  Aussie on Mon Oct 08, 2012 11:22 pm

maudie wrote:Forgot to ask-- does anybody have concurrent urological symptoms, like: sometimes feels a hesitancy to go, sometimes the urinary tract seems so inflamed! but I get tested and no infection. Urgent need to go often, but no apparent infection. What do you do for this, for comfort or cure?

I read a post here about women using their muscles wrong when peeing, pushing instead of relaxing? I remember being toilet trained to urinate, me crying on the pot, my mom screaming at me to PUSH!!!-- and being completely at a loss as to what I needed to do. It was always PUSH! Finally I pushed it (urine) out. So I've always pushed, and ,man, was I a strong, fast urinator! Also, as a little girl, my perineum ripped a tiny bit several times, for no apparent reason. I'm just all out of sorts in my whosit-whatsits and it seems so complicated. Isn't there just one answer to all this?

And do hormone suppositories help with vulvodynia and vestibulitis


Your urological symptoms could be IC - it is related to vv. Go to the IC Network forum and get on the IC diet as a precaution... It could also be overly tight pelvic floor muscles and not IC at all. Your experience of toilet training sounds awful. Go the a physical therapsit! This could all be your pelvic floor judging by the way your were told to push not relax your muscles!!!

Aussie

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Thank you!

Post  Mish on Tue Oct 09, 2012 11:14 am

I don't have any answers but thank you because I too have urinary problems! I constantly have a urinary tract infection and am just uncomfortable - feeling like I need to pee and then find it hard to pee - just always a irritated - thanks for sharing!! I don't feel so weird!

Mish

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Re: Can't believe it!

Post  Aussie on Tue Oct 09, 2012 10:30 pm

Mish don't drink cranberry juice for the "'infections'' it's highly acidic and will make symptoms worse if it is in fact IC. Stay away from coffee chocoloate and citrus. More detail can be found on the IC Network website Smile

Aussie

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Tough one

Post  Mish on Fri Oct 12, 2012 12:16 am

Thanks so much!! It's really tough because if I don't treat the UTI I end up bleeding in hospital but the preventions (cranberry, ural, apple cider vinegar etc) prevent it when it comes on... Noone seems to be able to balance this... ??

Mish

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Re: Can't believe it!

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