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» Anyone have pain with urination?
Yesterday at 9:55 am by Gaby

» New member - just looking for feedback
Mon Oct 15, 2018 5:40 pm by mertzwl

» Will I ever be able to wear jeans?
Sun Oct 14, 2018 4:14 pm by Npage14

» Amitriptyline Success and new-found love
Thu Oct 11, 2018 8:29 pm by megaanx

» Diagnosed recently, looking for advice
Wed Oct 10, 2018 2:30 pm by wuhujen

» Dose HAVING VULVODYNIA MEANS YOU HAVE LUPUS?? HELP IM FREAKING OUT!
Wed Oct 10, 2018 2:01 pm by pussycat

» From a concerned husband
Wed Oct 10, 2018 1:46 pm by shope610

» Had this for 5 years, looking for people who understand
Wed Oct 10, 2018 1:55 am by Npage14

» 6 year sufferer but I’ve found some hope
Wed Oct 10, 2018 1:33 am by Npage14

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

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: 2

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 …

Comments: 0

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 …

Comments: 1

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


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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