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» New here would very much appreciate advice at the end of my rope
Fri Jan 11, 2019 1:46 am by Jma990o

» Diagnosed Recently
Tue Jan 08, 2019 3:55 pm by flissyg

» Looking for suggestions or encouragement
Thu Jan 03, 2019 11:09 am by Gaby

» Clinical Trial for Vulvodynia Treatment
Wed Dec 19, 2018 7:13 pm by wramirez

» New and need advice and help
Thu Dec 13, 2018 9:48 am by Derry59

» Things that have worked for me
Tue Dec 11, 2018 11:32 am by Amethyst

» Found relief after more than 15 years of pain!
Tue Dec 11, 2018 11:17 am by Amethyst

» I'm new to this forum and would love some advice! :)
Tue Dec 11, 2018 3:06 am by Cin124

» I think I know what causes vulvodynia-it's the memory of pain
Sat Dec 08, 2018 1:24 pm by foxysugarpants

New here would very much appreciate advice at the end of my rope

Wed Jan 09, 2019 9:09 pm by Jma990o

This might be a little long but it's been such a long time I've even been able to talk about my problems openly thank you in advance for any helpful advice.
So ok I'm 24 I've been having this problem for over two years seen quite a few doctors and obgyns alike and nobody will take me seriously I have had a few utis and yeast infections and even bv once and this all started after one of the utis …

Comments: 2

Diagnosed Recently

Tue Jan 08, 2019 3:55 pm by flissyg

Hi All,

I’m so glad I’ve found a place where there are others who understand how I feel!

So this is my story:-

I’m 36,  and 4 months ago, whilst innocently sitting in bed reading I experienced a very sharp stabbing pain in my clitoris. It last only a few minutes and then subsided as quickly as it came on. It put it down to “one of those things”.  The following morning I woke up …

Comments: 0

Looking for suggestions or encouragement

Sat Jan 13, 2018 12:10 am by ryn207

Hi there. I'm 25 and have been dealing with this for over a year and a half and I'm really starting to lose hope this will ever stop.

In July of 2016 I had a yeast infection. When Monistat didn't work I went to my gynecologist who prescribed Diflucan. When the itching didn't stop she retested me and found that my yeast infection was gone, but I now had a bacterial infection. After taking the …

Comments: 6

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 …

Comments: 4

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: 13

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

Comments: 0

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 …

Comments: 3

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


Struggling

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Struggling

Post  doublej on Wed Dec 13, 2017 7:36 am

It's been getting to me a lot lately. The emotional pain of vulvodynia. It has made my sex drive plummet and that's affecting my relationship a little bit. On top of that I have a couple of friends that are trying to get pregnant and that just makes me wonder if I will ever be able to have that.

I have been struggling with this disease for about a year and a half now. I have seen four different doctors and tried too many different solutions to count. I've done different creams, pills, dilators, and even a physical therapist. The current doctor I am seeing "specializes" in this type of stuff but she still admits that it's really just trial and error with me. I am getting really worn out. I guess the hardest part about this disease is that nobody really knows why I have it or how to fix it.

I am scared that this is something I am going to have to learn to live with. That I have to accept that biological children may be out of the picture. That I may never be able to experience what sex actually feels like. I really need some encouragement or something to boost my moral.. I'm about ready to give up on trying to fix it cause it is so mentally draining...

doublej

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Re: Struggling

Post  PainBlogger on Wed Dec 13, 2017 12:26 pm

I can totally understand your frustration and fear that the pain will never go away. I felt like that for a long time. However, I am now in my last few weeks of pregnancy (achieved through natural means). So there is always hope.

Rather than me retype my history, you can read it here: http://vulvodyniasupport.forumotion.net/t2291-four-months-of-significant-improvement if you want. Ignore the "four months" in the post title - it's been a lot longer than that now.

The most important thing I can say is don't give up. Try everything. Even consider re-trying things that may not have worked earlier in your struggle. It took me a long time to see progress from physio/physical therapy, exercises and dilators but it worked in the end in combination with medication. It takes so much patience and mental resilience to fight this condition and that is so difficult to maintain. Have you considered trying some psychological therapy to help with the associated anxiety? I don't know how old you are but for myself, being in my late thirties, there was extra pressure to get better quickly so I could TTC and that extra pressure caused extra stress. Which of course didn't help.

I hope you see some progress soon.



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Re: Struggling

Post  doublej on Thu Dec 14, 2017 3:19 am

I’m only 19, so there really isn’t a lot of pressure to have kids and so forth, but it’s still just exhausting. I’ve been with my boyfriend for 2 years now and can’t even have sex with him. I go to the doctor for exams and I burst out in tears from the pain of a qtip touching me.

I guess when I’ve been struggling with this it’s most difficult because I never see any progress. Nothing has made it remotely better, in fact it’s gotten worse than it was to start.

I just would like to be able to have a normal sex life, to start a family of my own, etc.

I’m just tired.

doublej

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Re: Struggling

Post  sarisbaris on Tue Jan 02, 2018 11:13 pm

Don't lose hope! Please read my blog. I battled V for 15 years and I consider myself cured now. And my pain was just like yours. It burned to the touch and actually it burned for no effing reason at all. And no, it didn't take 15 years to cure. It didn't take long, once I found the right advice. I have a husband, a healthy sex life and happy crazy toddler. Be careful what you wish for! Haha!

My blog explains all. And yes, you are correct. The doctors do not understand what's going on and facing that is scary. But don't worry. I healed. You can heal. And I understand your exhaustion. Being in chronic pain is draining, specifically on your adrenals. So we'll need to heal those as well. You're not making up the exhaustion.

Read my blog and let me know if you have questions. I have some topicals that might help the burning that will save your sanity while you kill the virus and heal your organs.
Sarah

http://myvulvodyniacure.blogspot.com/


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Re: Struggling

Post  Mintaherb on Sun Jan 14, 2018 4:29 am

Did you start taking hormonal birth control around the time your pain started, or around 3-6 months before? If so, that could be the cause of your vulvadynia. It might be worth considering coming off it and seeing if things settle down. You can also apply a compounded estradiol/testosterone cream to the vulvar vestibule, which will help to correct the hormone imbalance caused by hormonal contraception.

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Re: Struggling

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