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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, …

Comments: 7

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 …

Comments: 4

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


Does anyone else have Endometriosis?

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Does anyone else have Endometriosis?

Post  CYF on Thu Oct 01, 2015 5:00 pm

Hi everyone,
I'm writing a new post because after 5 years of searching/struggling through my burning vaginal pain, I finally got a diagnosis. My Dr discovered that I have endometriosis and he surgically removed the misplaced tissue. But it doesn't end there. I have no idea how to proceed with treatment aka prevention of a future flare-up. My Dr. was wanting to put me on hormonal birth control (more specifically, the Depo-Provera shot) and I told him I wasn't comfortable with that. I have had horrible side effects to BC in the past.

If anyone has any advice/suggestions regarding what to try or what to avoid, I would really appreciate it. Thanks!

Also, FYI, these have been my main symptoms over the years:
-dull burning deep internal vaginal pain
-deep feeling of burning/inflammation/pain deep within my vagina during and after intercourse
-pain in vestibule during sex
-pinchy crawly contraction-type sensations in vagina
-digestive difficulties: alternating constipation and diarrhea
-for years i was having really heavy discharge but that has gotten better
****NOTE: Drs say that painful awful periods are the trademark symptom of Endometriosis, but that isn't always the case. My periods have been moderate. Years ago, I saw an Endometriosis specialist because I suspected that I had it, and he dismissed me after I told him that my periods were fine. 5 years later, and I realize I was right. Every woman is different and symptoms vary.

If you have any questions please feel free to let me know.

-C

CYF

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Re: Does anyone else have Endometriosis?

Post  sailor_moon on Fri Oct 02, 2015 8:31 pm

I had endometriosis removed 3 months ago. However it did not contribute to my vulva problem. I also have big digestive problems, I have chronic gastritis (chronic inflammation of the stomach, kinda like chrones disease but inflammation stomach instead of bowel). I suffer from severe reflux, I used to vomit every single day, nausea. Alternating constipation and diarrhea are classic endo sufferer symptoms, even after my surgery I still get this sometimes.

I recently read about digestive issues and vulvodynia and a link between the two being associated with candida overgrowth. I tested negative for candida every time until 4 weeks ago it came back positive. Problem is it seems to be resistant to fluconazole and clotrimazole.

Also has your PH been checked?

As for birth control I refuse to go back on it as I never had any problems until I came off it and all these problems showed up. If you have a hormone imbalance and want to have a blood test, birth control will hide any imbalance you may have and you will not get a true result. Have you had your hormones checked?
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Re: Does anyone else have Endometriosis?

Post  CYF on Fri Oct 02, 2015 11:24 pm

sailor_moon,

Thank you for your helpful reply. Like you, I never had any of these issues until after I went off birth control.

How did you find out that you have chronic gastritis? Does that show up on a CT scan? I had a CT scan a couple years ago and "nothing unusual" was detected - my Dr wanted to proceed with an endoscopy/colonoscopy but I didn't do so; it seemed too expensive/drastic at the time.

Do you have any issues with nutrient absorption? My Dr did a stool test and it indicated that I am not digesting/absorbing fats properly. I have no idea why this is the case. Dr thought it might be Celiac but then I tested negative.

Which type of Dr did you go to for your candida testing? In other words, was it a standard yeast test that a OB/GYN typically does, or was it a different type of candida test? I'm curious what my candida level is. It tested "normal" at the OB/GYN office but I'm wondering if there is a different/more comprehensive test.

My pH and my hormones have not been tested in years. Does a too high/too low pH contribute to these symptoms?

CYF

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Re: Does anyone else have Endometriosis?

Post  sailor_moon on Mon Dec 14, 2015 9:05 am

I literally only just saw your reply! So sorry I never got back to you! Hope things have improved, 2 months later.

Chronic gastritis showed up via endoscopy, it's the only way to diagnose it. Was meant to have colonoscopy too but it never happened due to the doctor on duty leaving and another doctor who did it didn't have authority to do the other end!

Hormones, candida and PH all tie in with one another. I've since been treated for candida and had 2 more swab tests done which have come back negative but I still have vulvodynia. I do not get extreme redness and as bad of a blistering feeling as I did previously but the itching and burning is still there
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Re: Does anyone else have Endometriosis?

Post  ringostarr26 on Wed Jan 20, 2016 6:48 pm

I also have/had endometriosis. Mine was scraped off back in 2006 when I had a dermoid cyst removed from my ovary. Honestly, I don't think my endometriosis contributed to my vulva pain but I could be wrong. Mine seems to be heavily related to Overly tight pelvic floor muscles that stemmed from a bad injury/fall to my tailbone in high school. My vulva specialist told me birth control can cause problems with vulvodynia. This probably isn't much help but I just wanted to say I'm in the same boat with endo. It definitely isn't a fun condition to have.

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Re: Does anyone else have Endometriosis?

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