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Newly diagnosed

Tue Oct 10, 2017 8:37 pm by Brevispink

Hello everyone. I have recently been diagnosed with unprovoked vulvodynia and would really appreciate some advice and support. I have had a chronic urine infection for 16 months and was on antibiotics for 9 of those months. I have been very uncomfortable for the entire time, but now I have absolutely unbearable stinging and burning all day with itching too. The infection has just about gone, …

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Recent "Poke" Pain - So Confused/Losing My Mind

Thu Oct 12, 2017 9:26 am by kelseybeth23

Long Story, but I am losing my mind and getting really depressed, so if I tell the full story maybe someone can help me.

Back in August I started to get an itch down there. Normally, in the past, when this would happen, I would change the way I wore my clothes, take more baths instead of showers, and use Monistat. This time, after about two weeks of no relief, I started to get concerned. I was …

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Does anyone else experience this?

Sat Oct 14, 2017 5:21 pm by Angelmegs

Hi— im new here. Im incredibly desperate so if anyone has any suggestions i would greatly appreciate it. Im a 20 year old female with vulvodynia and vaginismus. I was on the birth control pill (junel fe lo estrin) from age 13-18 because of severe menstrual pain. I used the xulane patch for a few months when i was 18 but eventually stopped BC altogether because it interferes with my med for …

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Post Full Vestibulectomy - 5 Years Later - Please Read

Tue May 02, 2017 6:18 pm by jen007

Hi All,

It's been awhile since I've written a new topic on the forum. Wondering if any of the same ladies are still here. I've come back to update you all on my post vestibulectomy results. I can't remember if I've done an update on my current state, so forgive me if this is repeated information... I can't remember how to view my old posts! Anyway, let me get on with my update.

For 4 years post …

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Do you ever worry that you're making it up?

Fri May 27, 2016 6:50 am by Lucci

Hello,

I was diagnosed with Vaginismus and Vulvar Vestibulitis 10 years ago. I was 18 and scared and moving across the country for college, but luckily was able to find a doctor who specialized in 'Women's Health' who immediately put me into physical therapy. Long story short, I've been in and out of the system ever since.

A few years into treatment, I had the diagnosis of PTSD added on for …

Comments: 7

Clitoris Issues

Tue Apr 28, 2015 8:17 pm by January

I am going crazyyy trying to figure out what's wrong. Please does anyone else have an issue similar to mine? I'm only 22. So, basically when my clit is lightly rubbed, there is no feeling. However, when rubbed vigorously and directly, the burning and tingling sensations shoot down my legs and feet as if coming to the end of an orgasm but with no good feeling leading up. It's so strange. What …

Comments: 2

Cured of Vulvodynia

Wed Aug 17, 2016 1:39 am by angelique2016

I used to post on this forum a long time ago and told everyone of how I was cured of my vulvodynia by a (Melbourne Australia) female dermatologist, she put me on very low doses of Nortriptyline (Allergron) for pain management about 10mgs I believe it was, and she also had me use Advantan Fatty Ointment (not the cream) (although I saw the cream for sale on ebay from germany) so it might help, as …

Comments: 10

Vulvodynia and IVF? Anyone done this? What does it do to the vulvadynia?

Sun Jul 30, 2017 1:03 am by Carolyn4

Hi everyone,

I have had vulvodynia since age 27--I am now 43 and it has been in pretty good remission.  I control it with acupuncture and herbs, and some cranial sacral therapy.  I have a 5 year old, had a pretty uneventful pregnancy which ended in a c-section.  My VV worsened after that, and I have worked hard to get it back under control (it took over a year to get it back into pretty good …

Comments: 1

Partial Vestibulectomy

Mon Jul 31, 2017 6:44 pm by JGD13

Hi all i am new here.
I had a partial vestibulectomy 21/7 for my provoked vulvodynia.
After a painful few days and feeling quite uncomfortable it seemed to get better. 1 week after i noticed some white stuff and gloopy discharge, it wasnt smelly or itchy but i got a check up at the gp surgery and the doctor said the stitches looked fine and i could just have a touch of thrush. He said this is …

Comments: 6


Views on Birth Control pill

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Views on Birth Control pill

Post  Jo44 on 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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Re: Views on Birth Control pill

Post  x_chelss@live.com on 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


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Birth control pills

Post  Jo44 on 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

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Re: Views on Birth Control pill

Post  x_chelss@live.com on 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

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Re: Views on Birth Control pill

Post  Redhead23 on 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.

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Re: Views on Birth Control pill

Post  x_chelss@live.com on 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!

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Re: Views on Birth Control pill

Post  A2015 on 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.

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Re: Views on Birth Control pill

Post  sailor_moon on 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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Re: Views on Birth Control pill

Post  kvelipuri on 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.

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Re: Views on Birth Control pill

Post  A2015 on 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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Re: Views on Birth Control pill

Post  zoeycaul on 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.

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Re: Views on Birth Control pill

Post  kvelipuri on 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.

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Re: Views on Birth Control pill

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