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» Can you guys tell me your experiences with diflucan/Fluconazole?
Today at 1:29 am by ryn207

» So frustrating!!
Today at 1:25 am by ryn207

» Looking for suggestions or encouragement
Today at 1:19 am by ryn207

» Looking for a friend..... and new problems
Yesterday at 10:00 pm by VVSSufferer

» Vestibulectomy recovery question!
Sun Jan 14, 2018 11:37 pm by Kezz

» Prescription creams that work!
Sun Jan 14, 2018 4:46 am by Mintaherb

» Struggling
Sun Jan 14, 2018 4:29 am by Mintaherb

» Went Away and Came Back
Sat Jan 13, 2018 10:56 am by mary jane

» Amitriptyline given for vulvodyina pain
Sat Jan 13, 2018 1:39 am by ryn207

So frustrating!!

Thu Jan 04, 2018 1:15 am by Hannah77

Well I'm back in pain after 7 years of pain free days.
I was diagnosed with vulvodynia when I was 17. I suffered for three years with horrible burning all day, painful sex with my boyfriend and just pure misery Sad I went into a spontaneous remission when I was 20. I'm still not sure how the pain stopped but all the sudden I could go an entire day without thinking of my vagina, sex started to …

Comments: 3

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: 4

Looking for a friend..... and new problems

Sat Jan 06, 2018 11:38 pm by infinitelywondering

Hi everyone,

I hope you're doing well.

I hate to say this, but I feel beaten down and terribly alone. I had a vestibulectomy surgery about 6 months ago and I was absolutely praying it would work. It didn't.

6 months later and here I am, sitting on my bedroom floor crying my eyes out because I know I'll never be able to have painfree sex. I don't know what to do and just need a friend Sad



Comments: 5

Amitriptyline given for vulvodyina pain

Tue Oct 24, 2017 2:46 pm by katycrawford

Hi there,

After years of being misdiagnosed etc as most women have on this forum I have finally been diagnosed with vulvodynia (yay) and have been given the lowest dose of an antidepressant called Amitriptyline. Has anyone been on this before and has any positive (or negative) news to give me? Im feeling down already and I've only been taking it for a few days, I don't have much hope of it …

Comments: 11

7 years later and life looks bleak :(

Wed Dec 06, 2017 2:50 am by RainyShay77

So 7 years ago I had a case of BV...the antibiotic caused a horrible yeast infection which took 5 months to 'get rid of'. During this time I had allergic reactions to 2 of the yeast infection creams which magnified the pain. Over the past 7 years I've tried multiple rounds of physical therapy (they only slightly helped), chiropractic, nerve blocks, medications to target nerve pain (amitriptyline, …

Comments: 7

Newly diagnosed - and prescribed amitriptyline cream/physio/psychology

Sun Jan 07, 2018 9:38 am by sophiarp

Hi everyone,

I'm so happy to have stumbled across this forum. I have just been diagnosed and am really struggling emotionally. It's nice to find this forum and feel a little less alone.

I've been prescribed amitriptyline cream. Has anyone had success with this? I was happy to have avoided the amitriptyline tablets. I'm also participating in physio and have been told I need to see a psychologist …

Comments: 2

Somebody please help me...

Fri Nov 24, 2017 8:05 am by Andlag

Hey everyone,

since I started being sexually active i often experienced burning in my vagina which was often worse during sex /around the time of my period or when using lubricants. I was never able to use tampons because the one time i tried putting them in it felt like acid was poured on my skin. Fast forward to 2 months ago when I got a UTI and an allergic reaction in my vagina. I thought it …

Comments: 11

Amtriptyline, baclofen, gabapentin cream for provoked vestibuldynia

Mon Nov 20, 2017 8:15 pm by WVR00

Hello,
Has anyone had success with this cream in helping their vulvodynia? How long has it taken to help? I’ve had some success with it, but not completely better. I’ve been on it for a month. I️ was hoping to hear from some ladies who have had major success with this cream. I’m hoping for some encouragement here. This condition is so frustrating. I’m lucky enough to have access to two …

Comments: 1

New diagnosis, any advice whilst I wait for a specialist

Wed Oct 25, 2017 1:47 pm by Julesyjules

Hi,

I'm new here and wanted to ask for some advice whilst I wait to see a specialist nurse.

After urinary problems which lasted 7 weeks, I finally saw a urologist, who on examination discovered significant inflammation and called in a gynaecologist, who diagnosed vestibulitis. They referred me to a nurse who specialises in vulvar skin issues. That was 5 weeks ago, and I'm still waiting for the …

Comments: 1


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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