Vulvodynia Support
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» Hope to all my suffering ladies
Stop taking your birth control!  EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
Stop taking your birth control!  EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
Stop taking your birth control!  EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
Stop taking your birth control!  EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
Stop taking your birth control!  EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
Stop taking your birth control!  EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
Stop taking your birth control!  EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
Stop taking your birth control!  EmptySat Jun 15, 2019 5:07 pm by mary jane

» 6 days post Vestibulectomy - Is this normal?? please tell me about your postop healing process!
Stop taking your birth control!  EmptyTue Jun 11, 2019 12:56 am by VVSSufferer

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: 2

Putnams 'bony parts' cushion or Putnams 'Dr Huff' cushion - which is best?

Sat Aug 01, 2015 4:17 pm by Fielder

Hi everyone,

I'm a newbie.  I live in the UK.  

I'm trying to work out the best cushion to get for my vulvodynia.  I suspect that I could have pudendal nerve involvement (the aching and burning pain is from vagina to clitoris) and I have rectocele and some tailbone pain too.

I have seen some good reports on older threads regarding the Putnams pressure relief cushions....with some ladies …

Comments: 11

An absolute success story- please read!

Fri Mar 08, 2019 10:57 pm by Persevere1990

Dear All,

I posted on here back in March 2017 having just got a diagnosis of vulvodynia after a few months of relentless and acute pain. I was desperate, I was hurting, I was scared I would never know life without pain there again.

I tried creams, acupuncture, numbing gels, frozen pads, baths with various internet recommended concoctions- convinced myself I had lichen sclerosus, herpes, thrush- …

Comments: 0

I'm sorry im rambling

Thu Feb 21, 2019 5:49 am by Jet227

hey, im 19, ive been struggling with this almost a year. The first week I became itchy I went in to check about a yeast infection another week later. I have been to 10 different doctors a total of about 15 appointments for this problem for the past 11 months. I have been tested for everything including having a biopsy. I was first told basically to just go home and use hydrocortazone, then I went …

Comments: 1

New member need advice please

Thu Feb 28, 2019 11:33 pm by PANDORA123

Hello, I have just been diagnosed with unprovoked vulvodynia. Im really scared and worried. It burns a lot and it hurts to sit down. I have been prescribed amitriptyle 10mg. Can anyone give me some hope that I can get better from this condition. Feeling low and depressed.

Thanks

Comments: 5

MonaLisa Touch

Fri Feb 08, 2019 7:35 pm by rl2091

Hi All,

I'm wondering if anyone has any experience with the MonaLisa Touch treatment for Vulvodynia? My pain started when I went on HRT(pill) for anxiety mainly and my pain abruntly stopped when I stopped HRT. However, when I started on the HRT patch (at my dr's suggestion), the pain returned and has never left. That was 7 years ago. I found MonaLisa Touch on the internet purely by accident …

Comments: 3

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: 4

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: 6

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: 3


Stop taking your birth control!

+3
Alana3
Neevi
anon99
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Post  anon99 Mon Nov 11, 2013 3:21 am

I am 22 years old and had been suffering with vulvodynia for over a year. I had been on birth control since 16 years old and had no issues with it...or so I thought. After a year of pain and discomfort (constant burning, stinging, fissures) and after countless trips to 7+ doctors and specialists, I myself found the cure to my own vulvodynia. I decided I was going to go as "natural" as positive in hopes to making myself more healthy. Therefore, I stopped taking all medicine, but Loestrin 24 was the only medicine I had been taking daily. In a month's time, my pain has finally gone away. I consider myself very blessed and am so thankful to have cured my vulvodynia. Doctors were telling me that it was something I was just going to have to live with but I just couldn't accept that answer so I kept searching for a cure. I think it takes a few weeks for the hormone levels to reduce and for your vaginal area to reduce in irritation and inflammation, so be patient, give it a month's time, and let your body heal. I will never go back on hormonal birth control ever again. The year with vulvodynia greatly affected the person I am, both emotionally and physically. I will pray for everyone reading this that they will find their cure.

anon99

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Post  anon99 Mon Nov 11, 2013 3:22 am

Also, I would like say I have been pain free for 4 months now

anon99

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Post  Neevi Mon Nov 11, 2013 9:31 am

I have a gynaecologist appointment for weds morning to get overall diagnoses but i have thought about coming off the pill to see if that helps at all.
Happy to hear it worked for you, helps me keep positive about curing it!
X

Neevi

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Post  Alana3 Mon Nov 11, 2013 10:54 am

Please dont tell people to stop taking meds. I absolutely have to be on bcps for endo and it didnt cause my pain. Remember everyone is different but until you go to med school you shouldn't be giving that advice. I'm glad you're pain free but that would cause a whole different level of hell for me. You're lucky that you had such an easy way of getting cured. Also remember different bcps do different things. I had one that gave me constant yeast infections so I switched. But please keep in mind you have no idea why someone might be on the pill its not always for sex. I have terrible periods and pain. If im not on the pill forget living I'll be in bed for 2 weeks of every month. Vulvodynia doesn't seems terrible then. At least for me. And there are other alternatives too I had surgery and I'm good to go. But like I said I'm happy you're cured but keep in mind sometimes you cant simply go off meds that easily.

Alana3

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Join date : 2012-09-25

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Post  anon99 Mon Nov 11, 2013 12:13 pm

Alana3-
I was on birth control for endo as well. I would rather have 3 weeks free of pain per month than pain everyday. But that's just my opinion. I think you missed the point of my post-- this forum is a place to share your story so that is what I have done. Also it wasn't an easy cure. I cried every day for 14 months because I was miserable and was having no luck with other treatments. I shared my story in hopes to possibly help another woman reading this forum; that they would talk to their doctor about the possibility of birth control being the cause and consider going off of it.

anon99

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Post  Alana3 Mon Nov 11, 2013 12:20 pm

I just dont like hearing oh hey I got off bcps and you should too was my point. Like I said glad it worked for.you. and that its way broader than no more hormones. If you have endo how do you deal now? Most girls with endo cant ditch bc and be good, but again if you can great.

Alana3

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Post  anon99 Mon Nov 11, 2013 12:34 pm

Alana3-
For me, it was as simple as the hormones I was putting in my body were hurting me. I just wanted to share my personal story, find support, and support others. Best of luck to you.

anon99

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Post  Alana3 Mon Nov 11, 2013 1:01 pm

Ok but that doesnt answer how you're managing your endo now. Did you get surgery? Im all for getting off the pill esp if theres a way to manage endo.

Alana3

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Post  mary jane Mon Nov 11, 2013 4:21 pm

it makes sense they don't work for everyone, I was on yasmin for only 3 mo. last year and one day I just woke up with sowllen vestibular glands!!!! My vulva was swollen as well, the glands l=felt like bulging veins, luckily then they dissapeared after taking naproxen !
mary jane
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Post  Alana3 Mon Nov 11, 2013 4:38 pm

And you're sure that's from bcps? Naproxen is an anti inflamatory so that makes sense it would go away. Also remember that different pills work for different people so the one that works for me may not be right for you. And vice versa. I'm just not a fan of hearing oh get off your pill and you'll feel better because it's not true for everyone. That was my point. Nothing more.

Alana3

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Post  mary jane Mon Nov 11, 2013 5:01 pm

yes, I'm sure it was from the birth control. It was my first time ever taking them and I did not do anything else to cause such bizarre symptoms.
mary jane
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Post  mary jane Mon Nov 11, 2013 5:02 pm

I was on them for 3 months only. I was fine after I stopped taking them
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Post  Alana3 Mon Nov 11, 2013 5:16 pm

Yeah any medicine can cause weird stuff thats why theres so many I'm allergic to tylenol thats why I take advil

Alana3

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Post  Fingerscrossed Tue Nov 12, 2013 10:31 pm

I've been on birth control (in various forms) since I was 18 and I'm about to turn 24. I asked my doctor, a pelvic pain specialist in Louisville, KY, about stopping birth control and he disagrees with the idea of stopping. In his mind, the pills help you to not have pain because they control your cycle. I'm actually on continuous birth control now and don't think it's made things worse. I have been scheduled for a vestibulectomy on Dec 17. If that doesn't work, I'll probably try getting off all my pills. I think my nerves are the issue, though I cannot compare sex on pills vs. off them. I've been on birth control for as long as I've been sexually active.

Fingerscrossed

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Post  Alana3 Tue Nov 12, 2013 10:56 pm

I lived in lex for four years if its nerves the vestibulectomy will help

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Post  A2015 Wed Jun 03, 2015 8:52 am

@anon99, your experience is almost identical to what I experienced in 2012.
Was on the Pill (Microgynon), suffered for over a year with Vestibulitis, countless trips to doctors none of whom suggested coming off the Pill. In desperation, I did, and within a month, all my symptoms had gone away completely.

However, in 2015 (having not been on hormonal birth control since, as I also swore I would never go on it ever again), I got a Yeast & BV infection and it has triggered Vestibulitis just as it was before.

I just wanted to comment to advise being gentle with your body, as I thought I would never have any problems again (I was so completely cured) and thought I was resilient to infections/VVS returning. I never had to question why coming off the Pill worked, as I assumed it was hormonal, but this time, it doesn't appear to be. Be well.

A2015

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Post  sailor_moon Fri Jun 05, 2015 1:15 am

All my problems started when I came OFF birth control...and when I went back on it to see if it would fix me it didn't. I think the pill has screwed up my hormones to the extreme that 2 years later I still only get a period once every 3 months.
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