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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 …

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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 …

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


Success! Estradiol/Testosterone compound cream

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Success! Estradiol/Testosterone compound cream

Post  daisiesfordays on Sat Aug 16, 2014 7:16 am

Hi all,
I developed VVS after taking low estrogen birth control. I didn't even know I had developed it (always skipped the sugar pills so I didn't get my period) until I had a yeast infection. Like many others, it took me about 5 tries to find a doctor to help me (message me if you want the details, he is on the west coast).
First, we tried estrogen cream. Estrace, to be exact. He gave me samples so I wouldn't have to purchase it. Smile That helped probably... 70%.
Then, I took spironolactone for acne. Was on it literally for a day, before my v started freaking out. Sad I was having pelvic floor spasms and it was super dry down there (when I look back, there was a decrease in my acne the following day after I took my first birth control pill. Sounds weird, but I am ODDLY sensitive to hormones.). I went and saw him, he said I am having PFD from all the pain my poor vestibule had been in. It was also a lot more red and "angry" (my word, not his) than when I had come in 3 weeks ago. I got prescribed some valium suppositories. He also mentioned that if I don't improve, we will have to consider surgery (really don't want a scalpel there). So I did a lot of research...
It just seemed weird to me that the Spironolactone had caused that, the only thing would be that I had super duper low amounts of free testosterone in my body! I managed to convince the office to write me a prescription for estradiol/ testosterone cream.  Twisted Evil It was only 42$ (last week I had spent $102 on my v, appointment + valium sups... yeah my insurance sucks and won't even cover compounds) and that is a small price to pay as compared to how much I had already spent!
It just seemed weird to me that the Spironolactone had caused that, the only thing would be that I had super duper low amounts of free testosterone in my body! So naturally, I threw that orange container of those bad boys away.
I started using the estradiol/testosterone cream. The first night, it was super red and uncomfortable, but the cream helped soothe the area.
Within 3 days, my vestibule looked completely normal! I've been poking and prodding it and there isn't even any ounce of discomfort.  Shocked 
Now, I just have to deal with my secondary vaginismus that stemmed from this whole 6 month journey. Crazy how more doctors aren't educated in it, especially when they keep telling you to put more irritating things down there! Ugh. Obviously I can't take birth control ever again, or clearly anything hormonal for my face, but I'll trade some zits and oiliness for the hell (quite literally, fiery) that I endured. Wishing luck to all you strong ladies!!! I love you 

daisiesfordays

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Testosterone receptors

Post  Sarah2993 on Tue Dec 26, 2017 11:13 pm

Hello! I'm glad the compound cream works for you - that's what has worked for me. I actually have/had 2 separate issues - vulvodynia, and chronic fissuring. I had surgery for the vulvodynia (vestibulectomy), which helped immensely. But my skin down there was/is incredibly fragile - my doctor said that when she was trying to stitch me up during the surgery, pieces of my skin would literally just tear off. So, I use a testosterone/estriadol compound cream to treat that, and I don't have those fissures anymore!

My doctor said that it's likely because my testosterone receptors in that area of the body are faulty. I wonder if this might also be the issue for you. The way I understand it, you can think of testosterone receptors as vacuum cleaners. The body has various vacuums throughout, one of which is located at/near the vagina. So even though there is plenty of testosterone (T) being produced by the body, the vacuum at the vagina isn't working properly to actually pick up enough T. Your hormone levels on a blood test would be just fine (my T is elevated by 1 point, even) because it isn't a T production issue - it's a T receptor issue.

My doctor thinks this was caused by BC pills too. Just thought I'd share because I think it's interesting!

Sarah2993

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