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» It feels like I’m going to have pain forever
Mon Jul 16, 2018 12:11 pm by mhhh

» It feels like I’m going to have pain forever
Mon Jul 16, 2018 10:01 am by dunkelma

» It feels like I’m going to have pain forever
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» Gabapentin gel and pregnancy
Sat Jul 14, 2018 4:15 pm by Georgie 121212

» From a concerned husband
Fri Jul 13, 2018 6:02 pm by emalita

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: 1

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: 9

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: 1

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: 5

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 …

Comments: 0

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


Any new ideas for me?

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Any new ideas for me?

Post  leitheij on Mon Aug 25, 2014 10:30 pm

Hello..
My name is Jill. I'm 38 years old and live in Michigan and I have been suffering from vulvar burning for 1 year.. Here is my brief history..

8/2013 - Had a yeast infection that didn't clear up with diflucan. Also found out I had HPV both the low and high risk. I was also having unprotected sex with a boyfriend at the time who had genital herpes. I tested for herpes 6 weeks after last contact with him and was negative.

9/2013 - 12 hours after sex my vulva would burn like crazy for about 6 hours and then reside. I started going to GYNO for a colposcopy (for abnormal pap and finding out I had HPV). I stopped having sex and ended relationship with the guy. It started to burn a little while I peed but then would reside.

9/2013 - 12/2013 - My GYNO tried me on: Flagyll, vaginal clindamycin, Doxycyline, and Cipro. My symptoms were burning that lasted than just right after burning, lots of discharge and tons of white blood cells yet under a microscope no real bacteria was found.

Went to about 6 more GYNO's that were no help.

1/2014 - 3/2014 - Started pelvic floor therapy and had about 80% reduction in pain. I still couldn't use tampons but I could occasionally wear tight jeans for a half a day without too much burning.

5/2014 - Got into a new relationship and started having sex. After the 3rd time of sex the burning started back with a vengeance and has not gone away. I once again tried physical therapy but after 2 1/2 months I have not had much relief.

Other things I've tried:
vaginal valium
Using dilators at home
Stretches at home
going for walks even when it burns
various anti-depressants - can't tolerate cymbalta, prozac, zoloft
anti-seizure - lyrica (caused severe constipation). I'm currently on neurontin
Motrin - 800 mg
Flexeril (muscle relaxer)
Savella
Ice/heat
testosterone compounded cream on vulva

I have not had sex for 2 weeks and I'm still having terrible symptoms but now it burns all through the perineal area even after a bowel movement. It burns in the labia minora and also as I'm peeing (through the urethra). I recently just had sex (after using dilators to stretch) and that was two days ago and the burning is so horrible.

I am having a colposcopy tomorrow to check up on the HPV. I was also tested with yeast from an Infectious disease doctor who attempted to grow out a culture for a week to see if it was a resistant form of yeast which it wasn't.

I'm having trigger point injections performed by an anesthesiologist on September 30th - possibly in the prudendal nerve to see if it at least helps the burning after a bowel movement.

I find that when it is my period I have some reduction in symptoms but it could be from the massive amounts of ibuprofen I'm taking.

If anyone has any other suggestions that I can bring up to the doc?

leitheij

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Re: Any new ideas for me?

Post  sailor_moon on Sat Sep 27, 2014 2:47 am

Hi,

I so feel for you. I have been dealing with this for the past year and a half, and am only just starting to get somewhere after going through 12 doctors to finally find a decent one.

My doctor has just started doing off-the-wall hormone testing on me. I just got tested for something that most doctors do not test for. The hormone is called AMH...here in Australia it cost me $60 because it is a special test. The normal AMH hormone level is 30....mine are 129!!!!!!!!!! Apparently it can cause vulva issues.

The heightened level of AMH is EXTREMELY rare, my GP has never seen it in the whole 20 years he has been a doctor.

I am having other tests done, like a blood test every week, day 7,14,21 and 28 of my cycle to see what my hormone levels are doing from week to week [my periods are extremely irregular].

AMH levels are only really heightened when there is an overload/dominance of a particular hormone, it is usually only seen in women who are on fertility drugs or have Polycystic Ovaries. I have been off birth control for 9 months!

I am yet to get my other results back so I can't confirm what the issue is.

But I would suggest getting your AMH levels tested and getting a full hormone profile [blood test every week of the month] to see what your hormones are doing.

Do you have any other symptoms?

My symptoms get worse leading up to my period, if I dont get my period its worse. I get slight relief when they finally come.

Have you seen a vulva specialist?
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Re: Any new ideas for me?

Post  leitheij on Mon Oct 06, 2014 8:34 pm

Thanks! I thought this site would notify me of responses but I realized I have to keep checking.

That's interesting about your AMH levels. I did have bloodwork done where they tested for my hormones. My free testosterone was a little low so they prescribed me a compounded testosterone oil but it didn't help me at all.

I have seen a vulva specialist but they just offer anti-convulsants, anti-depressants or lidocaine cream. I keep trying to find answers. I had to quit one of my two part time jobs in the past week and my boyfriend and I broke up over this. I miss him terribly but I know I have to get better somehow. I just don't know what else to do.

leitheij

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Re: Any new ideas for me?

Post  sailor_moon on Mon Oct 06, 2014 8:49 pm

I know a friends mum who had low free testosterone and had a form of Vulvodynia and they had to give her testosterone injections to fix her problem. Her symptoms completely went away after a few injections. And something was wrong with her estrogen too.

Hmmm if that has shown up in your tests it may have something to do with it. Did you get a blood test every week over a cycle?

I have almost lost my job over this shit. My boss abused me (because I have been sick vomiting, nausea, fatigue, double vision ect) and said " If you are sick you shouldn't be working! I need fit healthy staff, not sick staff", and has since then tripled my work load and told me if I can't handle the pressure than I should leave. Easier said than done when I have a mortgage to pay for and my husband doesn't earn "big money". So here I am, stressed 24/7 because of my symptoms and this ridiculous workload which I get paid minimum wage for. It's doing my head in. I have terrible anxiety because of it. With work problems comes financial fears.

My husband is super supportive, he has a really bad back so he can't have sex all the time anyway coz he is in too much pain. And he has a low sex drive because of the pain so I guess I got lucky. Either way, even if he did leave me I figure if that was the case he wouldn't be worth it if he did, if his dick had a problem I wouldn't leave him! I figure either way, my health needs to be first priority. I need to be selfish. I need to focus on finding a cure for myself.

I know the emotional bullshit that goes with all this. It sucks.

I'd ask for a hormone profile, testing every week, seeing as your testosterone levels were a bit low. You may have lowered or dominant estrogen too. Are your periods regular? Are you on birth control?

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