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» MAY HAVE FOUND A CURE- PLEASE READ
Thu Feb 15, 2018 10:04 pm by infinitelywondering

» my rock bottom, psychological effects of vulvodynia, I told him he can leave me
Wed Feb 14, 2018 6:43 am by renegade_magdalena

» Some interesting information about nerve pain in general
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Wed Feb 14, 2018 3:45 am by Athena

» What helped me
Wed Feb 14, 2018 3:38 am by Athena

» NO PAIN DURING SEX
Wed Feb 14, 2018 3:33 am by Athena

MAY HAVE FOUND A CURE- PLEASE READ

Thu Feb 15, 2018 10:04 pm by infinitelywondering

Dear all,

Today has been the day I've been waiting for. The day something FINALLY makes sense.
I've been told countless times that I've got nerve damage or a muscular condition, yet none of the specific treatments have helped me. My GP suggested attacking this from a different angle so referred me to a dermatologist specialist


after having a vestibulectomy with no success, I decided to visit …

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NO PAIN DURING SEX

Sat Feb 10, 2018 12:18 am by rockylife

I HAVE NO PAIN DURING SEX, BUT I FEEL THIS BURNING SENSATION ALL DAY JUST BESIDE THE VAGINAL OPENING. DO I REALLY HAVE A VULVODYNIA? I'M CONFUSED.

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Newby not sure where to turn

Thu Feb 01, 2018 3:32 pm by Cerjo87

Hi this is all very new to me , well the talking about it bit is , the pain while having sex and also the uncomfortable feelings after and feeling like I have  sistitus most of the time I’m very used to , I’ve suffered for 7 years now I’m only 30 . Finally after all this time the doctors or should I say my gp has said I have Vulvodynia and have givin me gabapentin to try .i told her I’d …

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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



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Newbie to the site

Sun Jul 30, 2017 12:16 am by Ksa

Hello. Thank you for this wonderful site. I'm currently under the care of a dr in Phoenix that specializes in vaginal disorders. I will probably be on a suppository of estridol the rest of my life and I am currently on medications for a rare form of vaginitis that's pretty unheard of for my age. My vagina literally hates me. I've struggled with vulvadynia for 20 years, the duration of my …

Comments: 4

Vulvodynia from #metoo media coverage

Thu Jan 25, 2018 9:01 pm by dooleyhornberg

I am wondering if anyone else in this forum has experience an increase or flare up in their vulvodynia as a result of the coverage of the sexual abuse scandals in Hollywood, DC, and the recent gymnastics scandal. I have definitely had a flare up.

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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

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 …

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Birth Control?

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Birth Control?

Post  itchyandscratchy on Fri Jun 17, 2011 1:49 pm

My vulvodynia seems to follow a predictable cycle along with my hormonal cycle, so that it gets worse about the week before my period and stays pretty bad during. I know there quite a few posts on here discussing whether hormonal contraception can make vulvodynia worse or even trigger it, but what I've been wondering is if contraception which prevents periods or lightens them could actually improve things (not least because it would mean less time wearing pads, which definitely don't help). Probably a bit of a crazy idea, but I do wonder as I've never been on any kind of hormonal birth control.

Has anyone had an experience of birth control helping the condition?
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Re: Birth Control?

Post  hopeful on Fri Jun 17, 2011 2:26 pm

Hi
I am on a contraceptive that basically stops my periods. I didn't have vulvodynia before I went on the pill so can't say what my pain would be like if I wasn't on it but my pain has been really bad whilst on the pill so I would guess that it isn't doing anything to reduce it. Everyone is different so I'd say it's worth trying just in case it does help you.

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Re: Birth Control?

Post  jules on Sat Jun 18, 2011 3:02 am

Hormones definitely plays a part in the pain prior to the period. My pain always increases significantly about a week prior to my period and about two days into may period. I have never been on birth control pills or any IUD's.

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Re: Birth Control?

Post  Sarah001 on Sat Jun 18, 2011 1:08 pm

Oddly I find my pain isn't so bad just before and for the first days of my period, I think this might be because my brain is occupied with my horrendous back pain I get at that time due to increased ligament laxity though.
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Re: Birth Control?

Post  Sebby (Admin) on Mon Jun 20, 2011 6:17 pm


I do find I get much more burning and soreness before my period and in the last few days of it.

I was first put on Cerezette by the gynea (mini pill to stop periods) trouble is I bled for 3 months on and off! When my periods finally did stop I felt dry and the soreness didnt go away

I then tried normal combined pill but it didnt help my pain

I got off contraception and let my periods return to normal. I am quite nervous now about hormonal contraception :/

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Re: Birth Control?

Post  itchyandscratchy on Mon Jun 20, 2011 7:04 pm

jules wrote:Hormones definitely plays a part in the pain prior to the period. My pain always increases significantly about a week prior to my period and about two days into may period. I have never been on birth control pills or any IUD's.

Wow! You're like my vulvodynia twin! =P lol

Sebby wrote:I am quite nervous now about hormonal contraception :/

Well that's understandable, pretty much how I feel about it.
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Re: Birth Control?

Post  Aussie on Tue Jun 21, 2011 2:05 am

I have read too much about obc causing v, I am coming off it as of tomorrow. I will probs bleed for like 3 months because I have missed a pill before and bled for a month. Hopefully I will be better off for it though. Can't wait to get this crap out of my body.

drug free apart from oxytrol patch Smile - no increase in pain since coming off drugs.

Do you research before stopping your periods, they are natural. I made a huge mistake going on the pill.

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Re: Birth Control?

Post  Vulvosaurus on Mon Jun 27, 2011 11:28 am

Hi all,

I'm new here. Nice to meet you all!

I've been taking the mini pill for around twelve months and have not had a period for ... around twelve months. My Vulvodynia began about nine months ago. It took me about 4 months to get a diagnosis, which I know is pretty quick compared to some.
Maybe you guys have already seen this, but I'll link to it anyway ...

http://www.youtube.com/watch?v=ziq9Fox8IVQ

Very interesting. I have made the decision to stop taking my contraceptive pill. I googled Dr Goldstein and it appears that he is very well qualified and experienced. I for one certainly fit his description of an 'early user'. I have been on hormonal birth control pills since I was 13 years old, which is virtually ALL of my reproductive life ... I'm now 35. It's worth a try. Maybe I'll get lucky!

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Hello and welcome!

Post  Aussie on Tue Jun 28, 2011 12:46 am

Hi Vulvosaurus!

Love the name.

Firstly welcome to the forum and congratulations on coming of obc. My specialist I am seeing at the moment completely agrees with dr Goldstein about the pill theory, she was the final push to get me off it, and even if it doesn’t get rid of the pain, after reading what it actually does to your body I don't want it anyway.

I have been off for 6 days and the bleeding has stopped Smile no change in pain yet but apparently it can take up to a year. I am unsure of what Goldstein says about hormone replacement to get the levels to where they should be after coming off it. I am hoping my body will fix its hormones itself. My sex drive unfortunately has shot through the roof, it's not so fun Sad

Where did your v come from, was there a specific trigger (yeast, uti etc)?

I have recently come off all medication (lyrica, ami, pill) and there has been no increse in pain! Smile trying something hollistic for once in my life, I am no longer a zombie from the drugs.

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Re: Birth Control?

Post  Vulvosaurus on Tue Jun 28, 2011 6:14 am

Hey Aus,

I've been off the obc pills for 5 days now and so far I've had no change in pain either. Man ... I hope it doesn't take a whole year, but even if it did, I suppose it would be worth the wait. I was hoping my hormone levels would right themselves without any help too. I must say, I'm not exactly excited to see how my first period in over a year is going to go! I'm Kinda dreading it actually.

I don't really know what caused my Vulvodynia. I seem to have a number of 'risk factors'. I certainly do have a history of frequent thrush infections, but I also have a herniated disc in my lower back, which I hear can lead to these problems. I also have a history of severe Endometriosis which I had surgery for a couple of years ago ... there appears to be a link between Endo and Vulvodynia too. Some of the information I've read suggests a possible link between gynaecological surgery and Vulvodynia.
I've also (embarrassingly) had an anal fissure in the past for which I used a Nitroglycerin based vasodialator ointment that may have been responsible for sensitising the area. In the end, the anal fissure required surgery to correct, which may also have contributed to the problem. And finally I was recently trialed on a drug called Sinemet (Levo Dopa) for a neurological condition that I have had for several years. My problem was thought to be a benign condition called Essential Tremor, but when the Levo Dopa proved effective for my tremor symptoms the doctors changed their minds about my diagnosis. They now think it is either Early Onset Parkinsons Disease (I hope not!) or something called Dopa Responsive Dystonia (wouldn't be so bad). Anyway ... Dopamine levels in the brain can have an effet on sexual health but it remains to be seen if taking oral dopamine will help with the Vulvodynia ... So who knows?

It's great that you've managed to get off all the meds. Is it me, or do most people seem to find the traditionally prescribed Vulvodynia meds ineffective? It certainly seems that way from the reading I've done!

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Re: Birth Control?

Post  Sarah001 on Tue Jun 28, 2011 12:52 pm

Anal fissures are often connected to pelvic floor spasm, the spasm stops the anus from relaxing and stools can cause tears when there's no relaxation during a bowel movement. I also have tremors which initially I was told was Essential Tremors but turns out mine is related to my Hypermobility Syndrome and my muscles are already overworked spasming and trying to support my joints where my ligaments have failed so when I need them to do something normal like move my arm or leg they tremble like I've just done a huge workout because they're always too exhausted to do anything which made perfect sense once I got to a Rheumatologist and he explained it to me! I had to go through a physio thinking I had MS, another looking at Parkinsons and another looking at Brain Tumours as a possible cause before this easy explanation arrived though. Rolling Eyes
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Re: Birth Control?

Post  Aussie on Fri Jul 01, 2011 2:52 am

Hi,

Sarah is right about the anal fissure. I have had this too after vulvodynia set in and used Nitroglycerin which cleared it up. Just have to be careful, going to the toilet almost always hurts me. You are like my twin! I had thrush and utis all the time prior to this.

Sarah: I found out from Alyssa Tait I have hyper mobile joints too. Although it doesnt cause tremors. It seems to be people that get this pain have several contributing factors.

It was expected I had endo too but they just put me on the pill to sort out my painful periods. (stupid docs)

Did you have the neurological symptoms prior to v? I started getting burning hands and feet a few months in, which they suggested first was anxiety due to my condition, then screening for ms then 'neuropathy' again, stupid doctors. I was on Endep for the burning hands and feet, then lyrica and endep together, which made my IC flare like crazy. I have had way way less bladder and clitoral pain since being off lyrica.

I didn't really 'manage' to get off meds. They were not doing anything for pain other than the burning hands and feet anyway. It took a nasty drug reaction for me to realize I don't want this stuff in my body. At first my hands and feet burned like hell for the first 4 days after stopping cold turkey, now they have settled down and it is annoying but not there constantly. Thank god my vulva pain has not increased since coming off everything.

9 days off the pill, no change to pain. I tried the prescribed magnesium and spip from my naturopath (2 pills every 10 mins for 2 hours prior to sex pain in the ass!) and it worked! I mean I still had slight pain at the entrance during but NO burning afterwards (yay) will keep trying it over the next few times and report back.

"Yes" water based lube and skyn by ansell condoms worked fine. No irritation. Smile

Hope you are doing well today.

Claire xx

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Re: Birth Control?

Post  A2015 on Thu Aug 13, 2015 2:47 pm

I wanted to post about my story to reiterate that there are DEFINITELY cases where VVS is caused by hormonal contraceptives, even when not immediately obvious.
I want to desperately encourage anyone who has VVS to come off hormonal contraceptives if possible.

In 2012, I had unprotected sex and took the morning after pill. I developed vestibule redness/soreness/itchiness. The clinic confirmed a Yeast & BV infection, explaining that this was common after sex (though I had never had any vaginal problems for years before). They also put me on the Pill (Microgynon 30). The infections cleared (tested negative) but my symptoms remained constant.

My symptoms extended beyond vestibule pain. I also had itchiness, redness & subtle inflammation of the whole vestibule (localised to this area), my vestibule skin started to tear during sex, get more inflammed & very regularly develop new infections (Yeast/Bacterial). I also had a lot of discomfort/itchiness in & around my anus.

Firstly, this made me question whether I had VVS because I didn't just have pain of the vestibule, as I kept getting infections too (now I understand that women with VVS are often simply more prone to infections & discomfort of the whole area).
Secondly, I assumed my VVS must have been caused by the infections (proliferation of nerves in the vestibule after infection), because the symptoms I had felt like they were permanent, that the skin itself was not normal anymore & seemed irreparable.

I didn't come off the Pill until mid 2013, when I had read more info about a link. I felt I should just come off it in case it might have been making anything worse.

The reality was (by my complete surprise and total elation) that within a month, my vestibule returned to completely normal and ALL other related symptoms also disappeared — the anal discomfort/itchiness & bring prone to developing infections.

I hadn't thought the Pill could be causing my VVS, because I had developed the infections before I started the Pill (I didn't consider at the time that just before I got the infections, I had taken the morning after pill which is a huge dose of progesterone). I also had no understanding of hormones & no idea how they could cause pain in a specific area of the body like this! Every doctor I asked said there was no way the Pill was relevant, which made me have little hope.

I believe there are 2 main causes for VVS — hormonal or a response to an infection. But there can be an overlap, and I didn't consider the Pill could be the cause because I kept getting the infections. But I was mistaken (and so were over 10 doctors & specialists).

I really hope this can help any women suffering.

As a side point, unfortunately, after being perfectly normal for 18 months, this year I developed infections (no hormones involved) and VVS has fully returned. I feel that my body has learned how it responded to infections when I was on the Pill, and now the nerves are irritated again = VVS Sad

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Re: Birth Control?

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