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» Anyone been to see Dr.Claire Bailey in Birmingham?
Tue Aug 15, 2017 6:36 pm by Kezz

» Recently Diagnosed.... Help!
Tue Aug 15, 2017 2:57 pm by amyhp

» Vestibulectomy
Sun Aug 13, 2017 9:54 am by infinitelywondering

» Discomfort from my own liquids
Sun Aug 13, 2017 4:27 am by Hopeitworks

» Anyone else have burning on the front of thighs?
Sun Aug 13, 2017 2:20 am by Hopeitworks

» Partial Vestibulectomy
Sun Aug 13, 2017 1:38 am by infinitelywondering

» Anyone being treated by Drexel University???
Sat Aug 12, 2017 8:50 pm by Hopeitworks

» Post Vestibulectomy Pain !!!
Sat Aug 12, 2017 8:00 pm by sj17

» Pain management - what works for me
Sat Aug 12, 2017 9:58 am by sj17

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: 4

New w/ Secondary Provoked Vestibuldynia

Wed Apr 26, 2017 11:46 pm by Birdy

Hi everyone,

I'm here because I'm pretty sure I have secondary provoked vestibuldynia, even though my gyno is still "optimistic" it is not.  My problem started six months ago when I got my second UTI in as many months (after going 25 years of life without one) and then ended up with a bad yeast infection (also my first one ever) thanks to the antibiotics.  Ever since the yeast …

Comments: 3

Anyone from the PNW?

Sat Aug 05, 2017 7:54 am by jungleclover

I'm located near Portland and I would be really cool to actually meet someone with this issue. I think my roommate in college technically had this problem. She had an overgrown hymen removed and can't deal with penetration as a result. But she is gay so it seems like it hasn't been a huge problem for her (although we didn't talk about it much so there was possibly more to it than she let on). …

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Constant pain, I want to die.

Fri Jun 02, 2017 4:29 am by Meggiemay

I posted on here a few years ago but my symptoms went away with the inflammation. I didn't get so lucky this time.

For over three months, i've had terrible rawness, burning, soreness in the urethral/vestibule area and pressure/hypersensitivity in the clitoral area. I've also had some lower abdominal pressure and burning on my butt. I can barely walk! My gyno hasn't been much help. I'm on …

Comments: 22

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: 1

New to the site and just had a vestibulectomy

Fri Aug 04, 2017 12:19 am by Hopeitworks

Hello Everyone,

I have been suffering from vulvodynia for years! So I decided to go ahead and have vestibulectomy on July 28, 2017. I really wished I would of found this site before I went through with the surgery. Maybe I would have been more prepared to deal with recovering. I just need someone to talk and I dont mind hearing your story.

Comments: 2

Post Vestibulectomy

Thu Aug 03, 2017 6:15 pm by infinitelywondering

Heya,

I had my vestibulectomy (full) about a day and a half ago. I was very sick and poorly just after the op and experienced intense pain down there Sad

However, today I came home and have done the following things:

-washed with warm water
-applied manuka honey to the area
-ensured I wash at least 3 times a day and dab the area dry gently
-use frozen peas to stop the swelling

As of now I am …

Comments: 0

can anyone recommend a good dermatologist in LA?

Thu Jul 27, 2017 4:17 pm by saffron

Hi, I am wondering if anyone knows a vulvar dermatologist in Los Angeles? My problems seem to be external, but I'm having trouble finding a knowledgable doctor. My current dermatologist is pretty cosmetic based and I'm afraid all the products he prescribed actually made my situation so much worse!

I know there a few drs in Orange County/San Diego, but was hoping to stay local as even …

Comments: 3

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: 0


Those With An Autoimmune Disease

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Those With An Autoimmune Disease

Post  BpCookie on Wed May 01, 2013 4:54 pm

Hi peeps, Once again I am searching for the answer to my Lichen Simplex Chronicus. So today I was brain storming, Googling multi health issues that may be related to each other and I came up with one health issue that can cause all my misery and that is an Autoimmune disease. Ive noticed that I have have a high leukocyte count, been losing my hair by the hand fulls, bruising easily, Hypothyroid, Lichen Simplex Chronicus (related to the psoriasis family) and it all points to an Autoimmune disease. Have any of you been diagnosed with an Autoimmune disease? If I could find one answer to all my problems I would do back flips.
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Re: Those With An Autoimmune Disease

Post  Alana3 on Wed May 01, 2013 5:38 pm

Not to sound any alarms, but a lot of what we have goes hand in hand with an autoimmune disease. So you can have one thing and still have the other. I know that IC is considered an autoimmune disease, and lots of people who have IC also have vulvodynia. It also goes hand in hand with IBS (fun shit literally lol), lupus, migraines and TMJ. So you can "cure" or treat one thing and still have the other. I doubt that just one thing is causing your problem, but I guess you never know. I've had hypothyrodism diagnosed (I refused to take any drugs tho, those are crazy potent!), TMJ, migraines, had IC thrown at me (no proof there...yet ugh). My advice is to STOP googling, I know we are all guilty of it. I was convinced I had AIDS because I had frequent yeast infections, was tired all the time, blah blah blah. Truth be told, you're going to give yourself an ulcer thinking you have all these things, when in fact, you probably just have LSC (not just but you get what I mean). Unless you have actually been diagnosed with an autoimmune disease, I would say concentrate on getting the hooha better. And then if something else pops up, then worry about it. But don't borrow trouble! Smile

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Re: Those With An Autoimmune Disease

Post  Sarah001 on Wed May 01, 2013 8:13 pm

They can do blood tests to see if you have autoimmune markers, I'd say to put your mind at rest ask your doctor to perform those along with testing your thyroid etc too then you'll know either way. I've had them done because of my joint problem and it really is one blood test to say yes or no. I'm with Alana on this one and think it's likely you have a few things going on instead of just one that covers all your symptoms, but still it won't hurt to have a simple blood test done to say either way.
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Re: Those With An Autoimmune Disease

Post  BpCookie on Thu May 02, 2013 3:27 pm

Alana and Sarah huns, I guess its just wishful thinking. Im always hoping to find one thing that is causing my multi health issues. My gyno had said something about an autoimmune disease because none of the treaments she tried worked.

Although Google can be a complete nightmare, I have found that it has also helped me on ocassions. The worst thing I ever did was look up VLSC photos. OMG, I freaked out. On a good note, I was having some health problems and the Dr. s couldnt find an answer, so I googled my symptoms, Hashimoto Disease. Which is what I ended up having and looking into that they also found the thyroid issue. I was put on meds and I now feel so much better.

Alana, I found a vlsc specialist but he wants to try his miracle treatments on me. LMAO. uuuggghhh another specialist. I also have an apt with another Dr. to talk about surgery options. Hubby doesnt want me to have any surgeries done until Ive exhausted all treatments. Oh goody, that will be another year of my life wasted.

hugs to both of you

Cookie aka The Burning Bush
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Re: Those With An Autoimmune Disease

Post  Alana3 on Thu May 02, 2013 3:32 pm

At the end of the day its YOUR vagina, not your husbands. Do what you think is good for your body, not what he thinks. If that's the option you're at now- go ahead and do it. But don't say anther year wasted. Usually they won't continue a treatment if you haven't got relief within 6 months anyway. But nothing you try is a waste. But if YOU want surgery do it. Did you call my doctor?

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Re: Those With An Autoimmune Disease

Post  BpCookie on Thu May 02, 2013 8:43 pm

Alana Sweet heart, Haven't gotten around to it.....yet. Ive been having some other pain issues and have been resting in bed, using my Ipad to reply to this board. This morning I got a call from my step mother, she was diagnosed with cancer about 18 months ago and things have gotten worse. So now I am a nervous wreck, crying all the time, having anxiety attacks, I can't sleep and all of this is just making my pain issues worse.

Hopefully when all this mess passes over, I can get back to being myself and will be able to make some phone calls. hugs hun
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Re: Those With An Autoimmune Disease

Post  Alana3 on Thu May 02, 2013 9:16 pm

Be we'll!! I just hate men lol sorry

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Re: Those With An Autoimmune Disease

Post  cupcake25 on Sun Jul 14, 2013 1:53 am

I have celiac disease, which is a digestive autoimmune disease (gluten free diet is the only way to manage it). I often wonder if my body's inability to fight whatever is causing the vulvodynia is related to my celiac. Celiac makes it very difficult to absorb vitamins and nutrients from food, and I still struggle with stomach issues. Perhaps there's another underlying food issue that Ive missed. The only other particularly strange thing that's come up repeatedly in my blood work (which is otherwise spotless) is a lower than normal white blood cell count. Who knows! It's such a tangled mess, so many possibilities.
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Re: Those With An Autoimmune Disease

Post  BpCookie on Sun Jul 14, 2013 6:34 pm

Cup cake hun, Thats very interesting, I have a low white blood cell count as well. Also prescribes a vitamin d boost for my cause mine is always low. I always thought that my vulvadynia was caused by some under lying health issue that the Dr.s havent found yet.

hugs to you
Cookie
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Re: Those With An Autoimmune Disease

Post  cupcake25 on Tue Jul 16, 2013 8:29 pm

Cookie,
I find it very interesting that you have low vitamin d as well! My blood work showed my vitamins were all normal except d, which was on the low side. I haven't started a vitamin d supplement but I've heard it helps.

I'm not as educated on white blood cell count as I'd like to be. I really have no idea what it could mean. My primary doctor doesn't have any answers and referred me to a specialist but I never went. I always assumed it was because of the Depo provera shot, which I believe was the trigger for all of my issues (it does lower the immune system).
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Re: Those With An Autoimmune Disease

Post  cupcake25 on Tue Jul 16, 2013 8:37 pm

Also... like Alana3 said, google can be a baaaad idea lol. I was too convinced I had HIV for a whole miserable month (even though deep down I knew that wasn't possible) because of the muscle pain, weight loss, yeast, fatigue. It's just so frustrating to feel like you're an inch away from discovering the true underlying issue. I've been trying to research with a grain of salt. Easier said than done though.


<3 cupcake
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Re: Those With An Autoimmune Disease

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