Vulvodynia Support
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» Hope to all my suffering ladies
Views on Birth Control pill EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
Views on Birth Control pill EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
Views on Birth Control pill EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
Views on Birth Control pill EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
Views on Birth Control pill EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
Views on Birth Control pill EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
Views on Birth Control pill EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
Views on Birth Control pill 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!
Views on Birth Control pill 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- …

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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


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Redhead23
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Jo44
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Post  Jo44 Thu Mar 19, 2015 9:17 am

Hi

I am seriously thinking about coming off my Birth Control pills and wondered if others had done this and whether they found it helpe? I'm currently on the combined pill.

Looking at my journal the previous two months, I've been better whilst on my period but the day I restart it the pain comes back.

I'd really appreciate people sharing their experiences. I am been on it for the past 16 yrs since the birth of my son. My VV was diagnosed in February and have had it since a UTI in November last year followed by a thrush episode!

Many thanks

Jo xx

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Post  x_chelss@live.com Thu Mar 19, 2015 11:51 am

Hi, I've been on microgynon birth control since I was 15 and the problems started about a year after I went on the pill. I'm now 20. I am also thinking of coming off the pill because whenever I have my weeks break everything seems to settle down.

I had a parcial vestibulectomy on the 28th January 2015 and so far everything seems to have gone and the surgery has worked. The only reason I wish to come off the pill is because I think the hormones which the pill contains caused this problem in the first place and do not want it returning x


x_chelss@live.com

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Post  Jo44 Thu Mar 19, 2015 1:27 pm

Hi

That's the one I'm on too! I've read stories on here where women have come off the pill and it's really helped them. Like you my symptoms are better when I'm on my period, but literally for the past two months, as soon as I've started it again on the Saturday, by that evening the soreness in the vestibule area is back again!

Not sure what my Gynacologist will think, but as I don't see him again until early May, I'm going to see what happens anyway. If it doesnt help I can always restart it again.

Thanks for your reply. X

Jo44

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Post  x_chelss@live.com Thu Mar 19, 2015 3:21 pm

It can't do any harm to come off the birth control and just see how you go, like you said you can always start back on the pill again. They do say the pill has nothing to do with vulvodynia but vulvodynia is all based on nerve endings and hormone control and considering the pill controls your hormones I think there's something weird about that whole theory especially when the majority of women are on the pill also.

But I will be coming off the pill soon, I will probably finish my pack and then consider the coil which has no hormones

x_chelss@live.com

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Post  Redhead23 Tue Apr 21, 2015 11:29 am

Ive been on the pills and the implant. Despite my doctor saying it wasn't connected I definitely noticed by stinging and burning pain was a loy worse on them. Even though my periods could use them because they're terrible right now, I'd rather deal than be in any more agony in that respect.

Redhead23

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Post  x_chelss@live.com Tue Apr 21, 2015 11:39 pm

I see a vulvodynia specialist and he's told me the pill isn't related to vulvodynia, but I think that isn't true. As I've stopped taking my pill and I feel so much better already!

x_chelss@live.com

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Post  A2015 Sat May 23, 2015 8:22 pm

Hi Jo44,

Just wanted to highly recommend coming off the Pill.

In 2012, I got a Thrush & BV infection after taking the morning after pill & was put on the Pill (Microgynon) on the same day I was treated for the infections. I suffered with VV for 1.5 years until I came off the Pill. All my VV symptoms completely disappeared within weeks, like a miracle. Unfortunately, after being perfectly normal for the last year and a half, this year I developed Thrush & BV infection again (no hormones involved) and VV has fully returned, so I have got to find a way to get rid of it again.

A2015

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Post  sailor_moon Sun May 24, 2015 4:09 am

All my problems started when I came off birth control. I stopped the pill and 3-4 weeks later this shit started! I went back on the pill for a few months and it make absolutely no difference whether I was on it or off it. So I just decided to stay off it for good. I strongly believe it has caused all my problems.

It has taken almost 2 years to find out I have severe hormone problems. Low estrogen, borderlining between menstruation and menopause, very low progesterone and 2 ultrasounds and a blood test confirmed I have PCOS. When I came off the pill I got the vulvodynia first, then started vomiting every single day, it was like I had constant morning sickness. Constant fatigue (still have that, nausea, migraines ect. I got an endoscopy done that shows I have chronic gastritis....A problem you can get from low estrogen! Gastritis is chronic inflammation of the stomach. ..so I believe it is all linked considering my biopsy downstairs came back with only non specific inflammation.

I have an operation at the end of June (fingers crossed! ! They had me in theatre 2 weeks ago and had to cancel due to emergency) to see if there are any internal causes for my problems such as masses, endometriosis, blocked fallopian tubes ect. Sometimes endo or a mass can sit on nerves down there and cause vulvodynia.

I wish I never went on birth control. ..I believe it caused everything that it wrong with me.
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Post  kvelipuri Thu May 28, 2015 6:50 pm

You might want to check out my other post today. Basically I saw a vestibulitis specialist who advised going off the pill and using an estrogen/testosterone compound. I was told that one will not work without the other, and it will still take 6-8 weeks to get some relief.

I think this is one of the standard treatments that Dr. Andrew Goldstein gives, based on what I've read on other forums. Sounds like he is quite expensive (>$1000), and I got the same advice after a very thorough and professional exam with a different specialist for much less - $350 for the first appointment with Lucy Treene in DC. I would highly recommend her.

Not sure if this would suit your personal circumstances, but I hope the info is helpful.

kvelipuri

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Post  A2015 Thu Jul 09, 2015 11:34 pm

Hi kvelipuri,

I'm just wondering if you've experienced relief since your last post above?

I had symptoms much like yours when I was on the Pill from 2012-13, until I came off it and had a complete recovery. I didn't have to apply an estrogen/testosterone compound but as you say, this is often the standard treatment to accompany coming off the Pill.

This year I developed VVS again without any hormones involved (just following a new episode of Thrush & bacterial infection) which is so upsetting.

I'm just wondering whether you're healing, as it would give further evidence that the Pill really can be the cause (and therefore the key to curing this) for many women.

I hope you are well,
A2015

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Post  zoeycaul Sat Jul 11, 2015 2:27 am

I'm trying the ET gel soon, too. Another doc in DC prescribed it - not nearly as expensive as Goldstein and accepts insurance. I did buy his book, though. I just can't justify spending $1400+ without first trying other qualified doctors. I'm interested to see how the ET gel goes, as I have this coupled with PFD.

As for the pill, I've had a urologist, an OBGYN, and a physiotherapist all HIGHLY recommend that I go off the pill ASAP. I'll probably butcher this, but essentially, hormonal BCs can cause your body to stop making its own estrogen, and estrogen also contributes in some part to creating testosterone. Without both, you'll have a drier vagina, with whiter skin that looks more menopausal. It can shrink the labia minora and the clitoris without enough hormones. And by extension, these items make sex and the vulva in general more prone to pain.

zoeycaul

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Post  kvelipuri Thu Jul 16, 2015 4:44 am

Hi A2015,

I'm not sure if what I can report is entirely useful or not. In response to your question about whether I've been feeling any better, the answer is yes and no. I'm just not sure yet what conclusions should be drawn from my experience.

I've been using the estrogen compound daily. I haven't seen exactly linear improvement, but I'm definitely not feeling as terrible as the first outbreak, which was an all-consuming and distracting burning/sharp pain. I had a really good, 2-week long period leading up to and during my last period. Now about two weeks after my period I've been feeling a little rough; irritation and little pinpricks while walking that make it just difficult enough to spend a whole weekend day out walking the city, if that makes sense. I keep telling myself that at least it's not so bad as to distract me while I'm seated doing my work during the workweek. But I was definitely hoping for a bit more improvement by now. Then again, it has not yet been 8 weeks since I started this treatment.

I'm really sorry to hear you've had another outbreak after having gotten rid of the last one. What treatment of any are you trying now? I hope you feel better soon.

kvelipuri

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