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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 …

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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 …

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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


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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