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Diagnosed recently, looking for advice

Sun Sep 02, 2018 12:51 am by Cloudberry

Hi everyone,

I'm so glad I found this forum! I was diagnosed with vulvodynia/vulvar vestibulitis (still not sure about the difference between all the different terms) a couple of months ago and I could do with some advice. This is probably going to be a lot of text because I just want to get everything off my chest, so please bear with me.

I’m a woman in my late 20s. Before getting diagnosed …

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Hurting, Burning, Itching, and Worn Out

Thu Aug 09, 2018 10:55 pm by donnambr

This vulvodynia that I'm currently suffering with is so cruel. I hurt, I burn, I itch. When I first got this several years ago, before the internet, I though I was the only one with this awful disorder. Doctors couldn't figure it out. I felt so alone and devastated. Somehow it disappeared for a few years and now I'm suffering again. This dreaded V misery is back and I feel like I will be with …

Comments: 5

Hi girls! New in this forum

Fri Jul 13, 2018 2:31 pm by Gaby

Hi everyone!

Also joining the V club, Here my story:

It all started last year in september with a very bad throat infection for which i had to take antibiotics for about a month. This cause several yeast infections (candidia albicans).... one after the other!. I had them every month from october 2017 till march 2018. During this period i use an incredible amount of anti-fungal creams and …

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Newbie and feeling helpless

Wed Jul 11, 2018 1:52 pm by Taylor1

Hi, I found out a few weeks ago that I have this condition, started off at the end of April as a uti took strong antibiotics then got a thrush infection and now this.. My doctor has tried me on amitriptyline and gabipentin and both made me so poorly I couldn't take it plus I have seen what long use of these drugs has done to my mom for pain and its not good. I am using coconut oil which does …

Comments: 3

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 …

Comments: 6

From a concerned husband

Thu Jul 12, 2018 10:45 pm by ConcernedYorkieHubby

Hello everyone,

This is probably a little unconventional, but I’m a man who is here because his wife has been diagnosed with vulvodynia. The poor girl has been suffering with vulva pain for around 10 years now, and I’ve been by her side through the pain and tears and doctors misunderstandings the whole way, and we’re both exhausted and terrified by the whole experience.

I’m sure a lot …

Comments: 3

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: 10

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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menopausal, need estrogen but each time get stinging not allergy

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menopausal, need estrogen but each time get stinging not allergy

Post  drruthfree on Wed May 14, 2014 1:01 am

I have tried literally everything anyone has posted. I am in menopause and need to use vaginal estrogen or feel like my bottom is falling out from inflammation. But, each time I use estrogen creams no matter how compounded, I get stinging and redness in vestibule. Diflucan helps some, although never tested positive for yeast. Anyone experience this?

drruthfree

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Vaginal estrogen compounded in coconut oil

Post  shesingsjazz on Sat Jun 07, 2014 1:12 pm

Have you tried having your doctor prescribe your vaginal estradiol in a coconut oil base from a compounding pharmacy? There are several I have used and could recommend.

shesingsjazz

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Re: menopausal, need estrogen but each time get stinging not allergy

Post  meelie on Sat Jun 07, 2014 2:11 pm

Please do recommend. Is it something I can take to my dr. for her to Rx?

meelie

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compound cream

Post  drruthfree on Sun Jun 08, 2014 2:36 pm

Thanks so much for suggestion of coconut oil. I was actually thinking about that the other day, as I have no problems with it. However, on Friday I got Estriol (.3) compounded in Natacream and for the first time, I did not get itching and it actually helped a lot! Of course, I now need to try it again, as I only put 1/2 the recommended amount. But this cream has no preservatives and is only made from vegetable stuff. So, hopefully it will put things right for me. I have a wonderful compounding pharmacist who works with me on this, with the permission of my most understanding gynecologist. He has given me just the bases to try and if I do OK, he makes up the base with .3 Estriol. Estriol seems to work better in the vagina than Estradiol, according to his research and others I have read recently. This is link to information about various bases: http://www.sobeapothecary.com/pdfs/97305_BaseCompChart_Top.pdf
I had to figure out that what I am getting is an irritant dermatitis. This is not allergic, as it doesn't respond to antihistamines.
I hope this stuff continues to work for me! Say a prayer.
Regarding the coconut oil; please add specifics in case I need to try that and for others, too.

drruthfree

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Stinging with vaginal/vulvar Estrogen application

Post  shesingsjazz on Sun Jun 08, 2014 4:20 pm

I forgot to mention in my last post that I also have stinging in the area where I have pain when I begin vaginal application of estradiol/estrogen. I have read about it online (just a few posts here and there) as well as confirmed it both with my reproductive endocrinologist who is my gyn and the compounding pharmacist at Hobbs Pharmacy in Merritt Island, FL. Their phone is 321-452-0010 and they are the same pharmacy that my other gyn, Dr. Georgine Lamvu, sent me to initially to fill this with a coconut oil base. They use several bases depending on what works for you. Apparently the stinging comes from either estrogen receptors being bombarded in tissue that doesn't have nearly enough (hence the pain we have) or from the increase of blood flow to tissues as estrogen does increase blood flow. I was able to test this theory that it was the estrogen causing it and not the coconut oil or other base as I also used the Estring which is the vaginal estrogen ring that only supplies estrogen to the vaginal area, it's not systemic. And when I used that, I burned for several weeks as well. I too thought that somehow the estrogen was having an allergic/irritant dermatitis reaction, until I was able to talk with the reproductive endocrinologist and compounding pharmacist. This only happens with some women, not all. And unfortunately I am one of those that apparently it gets worse before it gets better. I'm sticking with it this time though, because I know that it does work as I used the estradiol for 3 weeks and then quit (due to increased burning) and slowly over another 2-3 weeks my pain was down by 95%! But because I was not continuing to use the vaginal estrogen, the pain came back. Feel free to ask me any questions about it as I've done nothing but research this for the last 10 months and have tried everything, finally to get a diagnosis of vaginal atrophy. And just fyi, I'm not in menopause and only 44. But apparently in the premenopausal years, estrogen levels start to decline and so you can start to have the atrophic symptoms. If you can bear with the increase in pain for a little while, I believe your symptoms will disappear like mine did. Crossing my fingers for both of us!

shesingsjazz

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vaginal estrogen compounded

Post  drruthfree on Sun Jun 08, 2014 9:03 pm

So interesting. I began this misery 5 years ago when Vagifem stopped working at age 60. I got the original problem at age 50 or so but then the Estrace worked. I had to go on systemic bio-identical hormones for almost two years, as with Estrace everything just swelled up. I have read this happens to some women who have extreme atrophy. I was not really happy on systemic hormones, as I felt tired all the time. I am so interested in your experience. I do think that the itching I have had is contact dermatitis, as it happened with the base alone and when I tried Replens it was unbearable explosive itching. Stinging is another story, however, but so far with the natacream and Estriol, I have not gotten eiher. So now I have found a base that doesn't cause itching or stinging for me. Hallelujah! However, I am unsure of just how often to use it till this thing gets better without causing yeast from too much estrogen. My doctor says everything looks well estrogenized in there, but nevertheless, I get uncomfortable in only a couple of days without direct application to the tissues. From your post, I am surmising that I need to use it every night for a while.
I have also read that testosterone works best in the hymenal ring area. So, specifically, have you found that you need to use estradiol every night for a certain amount of time or just all the time? I know everyone is different so what may work for one person does not necessarily apply to all. Do you have any thoughts on testosterone for the vestibule area?
I have also thought that maybe I need to keep using systemic because it seems my body doesn't produce hardly any hormones now. I am a DES daughter and our hormones are generally all screwed up. A reproductive endocrinologist sounds like a good idea, if I can find one here. I had not thought about seeing someone in that field. But will try anything at this point. Thanks for the pharmacy number. I am going to call them tomorrow for suggestions, too.
I feel for you, believe me. I, too, am obsessed with my vagina. Totally ridiculous. I see you sing jazz? My hobby is ballroom dancing.

drruthfree

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Re: menopausal, need estrogen but each time get stinging not allergy

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