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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 …

Comments: 8

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 …

Comments: 0

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 …

Comments: 0

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


Looking For Answers. Comparing Notes.

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Looking For Answers. Comparing Notes.

Post  BpCookie on Wed Feb 20, 2013 10:58 pm

I have Lichen Simplex Chronicus which pretty much causes the same symptoms as Vulvodynia. My Gyno's some times calls it Vulvodynia. I wanted to ask a few questions to see if any one has any of these things in common.

1. peri menopause, menopause or hormone problems?

2. has anyone had a uterine ablation done?

3. any STD's? (I had vaginal warts and my dr. froze them off, three damn times. I still have scaring)

4. use a vibrator before all of this happened?

5. Problems with a lot of yeast infections?

6. Problems with lots of UTI's?

7. Any back pain issues before all of this started?

Take care everyone and keep sitting on those ice packs.

hugs

The burning bush
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Re: Looking For Answers. Comparing Notes.

Post  Alana3 on Thu Feb 21, 2013 11:19 am

I had yeast, uti and back pain

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Re: Looking For Answers. Comparing Notes.

Post  BpCookie on Thu Feb 21, 2013 4:01 pm

Hey Alana hun, no hormone problems? Like messed up periods, skipping periods or having them too often? Just wondering. Also, did you have back problems before all of this happened or after? Before the Vulvodynia, my upper back and neck hurt, then about one year after I got this, my lower back and tail bone started hurting. I think the lower back is due to how I sit because it hurts too much to sit the way that I normally would.
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Re: Looking For Answers. Comparing Notes.

Post  Alana3 on Thu Feb 21, 2013 4:31 pm

I mean my periods were crazy before I got on birth control, but I was 14 when I got put on it and haven't been off since and I'm 27 now. But, my periods were crazy and super heavy, but its apparently a very common problem and supposedly changes after you go thru puberty, but I like my pill too much to get off it. My periods screwed up after my vestibulectomy and I was on BC, but it was because of anaesthesia. Its back to normal now, thankfully. I have tight muscles, and my lower back and hip hurt pretty bad especially right before my period- but I have to say I am a very active person, I horseback ride, workout, yoga, zumba, etc, so I don't really know what is connected and what isn't. Have you done acupuncture? It works so well!



I seriously don't think you're going to find the why to your problem, I finally just accepted it, it would be like trying to figure out why someone got Leukemia or Lupus or something. They're both terrible, but there's probably not an answer to the problem. But more importantly, there is a fix. I would think that would drive me crazy thinking everything causes it. And honestly, there's nothing you can do about it, shoot for a cure, not the why's.

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Re: Looking For Answers. Comparing Notes.

Post  Alana3 on Thu Feb 21, 2013 4:36 pm

And that last part wasnt meant as bitchy, I'm like an hour before my periods coming and my hooha is on fire what a terrible feeling, I hate my vag!

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Re: Looking For Answers. Comparing Notes.

Post  Kathy100 on Fri Feb 22, 2013 12:47 pm

Hi,

1. Yes - have breakthrough bleeds (even thou on pill) which last about a week - moods go haywire & feel very tired. After doing ultrasound /hysterscopy / smear - gynae now thinks hormonal - possible start of menopause. I'm 47. Happy days.....

No STDS or yeast infections.

4. Yes - but not internally.

6. Problems with UTIs (but tests always clear) & pain with sex long before I was diagnosed & told all in my head.

7. Used to get pain in shoulders & neck before it started but think that was down to sitting in front of PC all day. Now get muscular pain in tailbone, across backside and down my legs...am doing stretches for this which help. Lower back is starting to hurt too... The pain is worse around the breakthrough bleed time. I was pretty active before this started zumba, gym etc. Now I don't have energy to get through Zumba class ... Got an appointment at the pain clinic today so am hoping to get some answers. The specialist I saw thinks mine all started with IBS, aggravated by the UTIs and gradually got worse so now my whole pelvis is clenched up which is causing all the pain.

Take care & good luck xx

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Re: Looking For Answers. Comparing Notes.

Post  Kathye10 on Fri Feb 22, 2013 5:22 pm

The Burning Bush....That's what I call myself at this point...haha.

1.) Not sure, haven't had my hormone levels checked yet.
2.) No
3.) No, but I've showed positive (recently) for a few different types of bacteria which were treated by numerous antibiotics, externally and oral pill form.
4.) Externally
5.) I get yeast infections once every few years, but nothing a 3 day treatment didn't cure.
6.) Never had one before (thankfully)
7.) Always had lower back problems. Core is not strengthened at ALL, which I believe is why my back is so messed up

I know V is not the a "cause", it's a symptom of something deeper. I am going to see a specialist in a few weeks to try to pin point what might be the cause. I'm going to assume it's either over medication and my nerves decided to have a party down there when no one invited them OR from all of the pain, my pelvic floor muscles have tightened so badly that this is my "cause."

It seems like the women who finally pin point the cause usually get better or make a full recovery. I'm wishing that for ALL of us! Very Happy
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Re: Looking For Answers. Comparing Notes.

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