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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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Hello. Happy to have found this group.

Fri Dec 07, 2018 9:01 pm by foxysugarpants

I am new here and hope to gain some insight into my vulva pain. I suffered for a long time not realizing that there are ways to feel better. I saw the Dr. yesterday and I am starting P/T pelvic and valium suppositories. queen

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New and need advice and help

Wed Dec 05, 2018 3:26 pm by Cin124

Hi everyone,

About three months ago, I started having vaginal and vulval itching. Then, about two months ago, my vulva started to feel painful and look swollen, so I went to the doctor. I was tested for herpes, chlamydia, and gonorrhea which all came back negative. I also had to do a vaginal swab test and the only thing that came back positive was yeast infection. I was prescribed hydrozole …

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Had this for 5 years, looking for people who understand

Sat Oct 06, 2018 9:46 pm by blackberrie

Hey all. I'm really struggling to find anyone in real life who can really understand what I'm going through. I've had vestibulodynia for 5 years now and I'm single. Obviously it has completely affected how I approach dating and sex and the fact that I can't really talk to people irl about it has made me feel very lonely. I've found that a lot of the women who have this problem are married and …

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Anyone have pain with urination?

Tue Oct 16, 2018 2:35 pm by mertzwl

Hi everyone - I can't believe I've been dealing with this for almost 10 years and an appointment scheduler at a urogyn office is the one to suggest I look into vulvodynia. Honestly, I don't care, I just thankful I might have an answer.

I have pain in one specific spot right around the urethral opening so it always coincides with urinating (it's not a uti). Does anyone else deal with pain …

Comments: 6

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 …

Comments: 4

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: 4

6 year sufferer but I’ve found some hope

Wed Oct 10, 2018 1:33 am by Npage14

Hey, ladies! I’m new to this support group, I’ve thought about doing something like this for a while so I wanted to try this out! I’ve had vulvodynia for 6 years now, I am self diagnosed. I’m 20 now and the pain started when I had my first encounter with sexual contact when I was 14(I still remained a virgin though it was fingering). For a couple years the pain was so bad I could hardly …

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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 …

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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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