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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 …

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Can discharge cause vulvadynia

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Can discharge cause vulvadynia

Post  Casscass09 on Thu Jun 02, 2016 10:57 pm

Can vulvoadyna cause weird discharge?
I had a lot of yeast infections/ bv awhile back and after I got rid of it I still had pain with peeing and vulva pain. I've noticed for awhile I've had a lot of discharge whenever I get it looked at, they comment I do have lots of discharge but after all my tests come back negative the doctor never questions the discharge.

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Re: Can discharge cause vulvadynia

Post  emalita on Thu Jun 02, 2016 11:17 pm

I guess it all depends on what your discharge is like and what all your symptoms are. Desquamative inflammatory vaginitis and inflammatory vaginitis can cause excessive discharge but so can infections and STDs. I have IV, but excessive discharge was never a huge issue for me. The specialist I see believes that a lot of vulvovaginal pain is caused by the discharge from an unhealthy flora (e.g. high white blood cell count, low lactobacillus, etc.), and he says the discharge in a way burns the inner labia and vestibule (including the urethra).

Vulvodynia isn't a single disease/condition for everyone. The diagnosis literally means "chronic vulvar pain without an identifiable cause". So, can vulvodynia cause discharge? Well, it all depends on what the true cause of your pain is.

Sorry, that probably wasn't the response you were hoping for. Just know that it took about 11 different specialists before I got my diagnosis because not all providers are trained or have the testing to be able to diagnose DIV or IV. I'm not saying you have either condition, but don't let doctors tell you there isn't anything wrong when you clearly know there is...especially when most doctors seem to only look for yeast, BV, and STDs. Our lady bits are far more complex than that Wink

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Re: Can discharge cause vulvadynia

Post  Casscass09 on Thu Jun 02, 2016 11:37 pm

emalita wrote:I guess it all depends on what your discharge is like and what all your symptoms are. Desquamative inflammatory vaginitis and inflammatory vaginitis can cause excessive discharge but so can infections and STDs. I have IV, but excessive discharge was never a huge issue for me. The specialist I see believes that a lot of vulvovaginal pain is caused by the discharge from an unhealthy flora (e.g. high white blood cell count, low lactobacillus, etc.), and he says the discharge in a way burns the inner labia and vestibule (including the urethra).

Vulvodynia isn't a single disease/condition for everyone. The diagnosis literally means "chronic vulvar pain without an identifiable cause". So, can vulvodynia cause discharge? Well, it all depends on what the true cause of your pain is.

Sorry, that probably wasn't the response you were hoping for. Just know that it took about 11 different specialists before I got my diagnosis because not all providers are trained or have the testing to be able to diagnose DIV or IV. I'm not saying you have either condition, but don't let doctors tell you there isn't anything wrong when you clearly know there is...especially when most doctors seem to only look for yeast, BV, and STDs. Our lady bits are far more complex than that Wink

Thank you!! I'm looking into another Gyno. The one I have now never brought it up, I had to mention it. Then all she did was refer me to physical therapy. Which I'm still gonna do, but she never tried anything else. So I feel like she probably doesn't know much.

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Re: Can discharge cause vulvadynia

Post  emalita on Thu Jun 02, 2016 11:50 pm

Where do you live? If you're in the U.S., my specialist is in AZ (Fowler Gyn International). He doesn't have the greatest bedside manner, but he does have special testing available that most doctors don't have (getting a diagnosis is half the battle Smile ). Plus, he's a lot cheaper to see than a lot of doctors.

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Re: Can discharge cause vulvadynia

Post  Casscass09 on Mon Jun 06, 2016 12:58 pm

emalita wrote:Where do you live? If you're in the U.S., my specialist is in AZ (Fowler Gyn International). He doesn't have the greatest bedside manner, but he does have special testing available that most doctors don't have (getting a diagnosis is half the battle Smile ). Plus, he's a lot cheaper to see than a lot of doctors.

Sadly, I don't live near there. Hopefully I can find someone good around me. Another question, is it possible for vulvadynia to cause burning with uranation? I thought it might be IC at first but I went to the urologist And she gave me pyridum for the burning. After that it went away for some reason like for 4 months and the when I tried to have sex it came right back. Don't know if that has anything to do with vulvadynia or not?

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Re: Can discharge cause vulvadynia

Post  emalita on Mon Jun 06, 2016 1:50 pm

Well, just remember that the diagnosis of vulvodynia simply means you have unexplained vulvar pain...it is a diagnosis of a symptom, not a disease (similar to being diagnosed with a headache - a headache is a symptom, not the root cause of the pain, which may be stress, hunger, hormone fluctuations, etc.). Some women have vulvar pain that is caused by nerve issues, some have pelvic floor dysfunction, some have unidentified environmental sensitivities, etc. Below are some links that talk more about it:

http://goaskalice.columbia.edu/answered-questions/what-vulvodynia-and-vulvular-vestibulitis
http://www.ncbi.nlm.nih.gov/pubmed/14756898
http://www.nva.org/what-is-vulvodynia/what-causes-vulvodynia/

So, depending on what the cause of your pain is, you may experience burning with urination. Since this pain only returns when you try to have sex, are you making sure your partner is using only hypoallergenic products since their skin is coming into contact with you? Do you use condoms or a lubricant that you could have developed a sensitivity to? Do you make sure to urinate immediately after having sex? You may be getting frequent UTIs. Some women find they can prevent sex-related UTIs by using a supplement called D-Mannose before and/or after sex. That may be something to look into for you.

emalita

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Re: Can discharge cause vulvadynia

Post  Casscass09 on Mon Jun 06, 2016 2:14 pm

emalita wrote:Well, just remember that the diagnosis of vulvodynia simply means you have unexplained vulvar pain...it is a diagnosis of a symptom, not a disease (similar to being diagnosed with a headache - a headache is a symptom, not the root cause of the pain, which may be stress, hunger, hormone fluctuations, etc.). Some women have vulvar pain that is caused by nerve issues, some have pelvic floor dysfunction, some have unidentified environmental sensitivities, etc. Below are some links that talk more about it:

http://goaskalice.columbia.edu/answered-questions/what-vulvodynia-and-vulvular-vestibulitis
http://www.ncbi.nlm.nih.gov/pubmed/14756898
http://www.nva.org/what-is-vulvodynia/what-causes-vulvodynia/

So, depending on what the cause of your pain is, you may experience burning with urination. Since this pain only returns when you try to have sex, are you making sure your partner is using only hypoallergenic products since their skin is coming into contact with you? Do you use condoms or a lubricant that you could have developed a sensitivity to? Do you make sure to urinate immediately after having sex? You may be getting frequent UTIs. Some women find they can prevent sex-related UTIs by using a supplement called D-Mannose before and/or after sex. That may be something to look into for you.
I'm using non lube condoms with a 3 ingredient lube because I suspect that regular lube is what what causing my bv. I pee after sex and already use d-mannose before and after. It's not utis, I've gotten tested about 6 times. Nothing's come up. when I went to Gyno she told me that my muscles are very tight near the opening Could that be PFD?

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Re: Can discharge cause vulvadynia

Post  emalita on Mon Jun 06, 2016 5:16 pm

It certainly could be PFD, but it may not be either. When I'm able to maintain relief sometime in the future, my specialist said I will need to start dialator therapy since I haven't had sex in over a year, which has resulted in tightening of my vaginal opening, and it will also "reintroduce" me to penetration again prior to actually having sex. So, I guess what I'm trying to get at is not all tightness is PFD.

However, the good thing about PFD is that treatments for it are not something that would harm you if you wanted to go down that route (unlike, for example, thinking it's a chronic infection and treating it with antibiotics, which can cause harm). I believe there are some books out there that allow you to try dialator therapy at home. Hopefully one of the ladies on the forum who have used at home treatments can comment on a good book.

Otherwise, seeing a pelvic floor physical therapist would be a great place to start if you suspect PFD.

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Re: Can discharge cause vulvadynia

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