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Diagnosed recently, looking for advice

Sun Sep 02, 2018 12:51 am by Cloudberry

Hi everyone,

I'm so glad I found this forum! I was diagnosed with vulvodynia/vulvar vestibulitis (still not sure about the difference between all the different terms) a couple of months ago and I could do with some advice. This is probably going to be a lot of text because I just want to get everything off my chest, so please bear with me.

I’m a woman in my late 20s. Before getting diagnosed …

Comments: 3

Hurting, Burning, Itching, and Worn Out

Thu Aug 09, 2018 10:55 pm by donnambr

This vulvodynia that I'm currently suffering with is so cruel. I hurt, I burn, I itch. When I first got this several years ago, before the internet, I though I was the only one with this awful disorder. Doctors couldn't figure it out. I felt so alone and devastated. Somehow it disappeared for a few years and now I'm suffering again. This dreaded V misery is back and I feel like I will be with …

Comments: 5

Hi girls! New in this forum

Fri Jul 13, 2018 2:31 pm by Gaby

Hi everyone!

Also joining the V club, Here my story:

It all started last year in september with a very bad throat infection for which i had to take antibiotics for about a month. This cause several yeast infections (candidia albicans).... one after the other!. I had them every month from october 2017 till march 2018. During this period i use an incredible amount of anti-fungal creams and …

Comments: 1

Newbie and feeling helpless

Wed Jul 11, 2018 1:52 pm by Taylor1

Hi, I found out a few weeks ago that I have this condition, started off at the end of April as a uti took strong antibiotics then got a thrush infection and now this.. My doctor has tried me on amitriptyline and gabipentin and both made me so poorly I couldn't take it plus I have seen what long use of these drugs has done to my mom for pain and its not good. I am using coconut oil which does …

Comments: 3

I'm new to this forum and would love some advice! :)

Tue Jun 05, 2018 4:13 am by anikita

Hi lovely gals!

I'm honestly hoping to get any bit of advice anyone might have to offer. I go from bouts of sobbing hysterically in my boyfriend's arms to feeling confident that I can beat this.

I haven't been actually diagnosed with vulvodynia but EVERYTHING under the sun has come back negative. I started having sex 4 years ago after starting Lo Loestrin, with my first and current boyfriend …

Comments: 6

From a concerned husband

Thu Jul 12, 2018 10:45 pm by ConcernedYorkieHubby

Hello everyone,

This is probably a little unconventional, but I’m a man who is here because his wife has been diagnosed with vulvodynia. The poor girl has been suffering with vulva pain for around 10 years now, and I’ve been by her side through the pain and tears and doctors misunderstandings the whole way, and we’re both exhausted and terrified by the whole experience.

I’m sure a lot …

Comments: 3

I'M NEW - Do I listen to my gyno who I feel has it wrong?

Fri Mar 09, 2018 6:17 pm by Tunes25

Hello!

I am a 25 year old woman and wanted to share my story here as I feel frustrated by the suggestions of my gyno and am hoping for some advice.

To give the context for this: in September 2016 I moved in with my long term boyfriend after living abroad a year and (nearly) abstaining from sex. Within a few weeks I had got a yeast infection which I treated myself successfully, but then 2 weeks …

Comments: 10

Gabapentin Gel. or other topical creams

Thu May 10, 2018 9:43 am by Rosie21

Hi I have been suffering for some years with this abominable pain. I have tried most of the systemic drugs , I asked specialists and Doctors if I could at least try a topical treatment but because this requires a special prescription have been refused Has anybody had a chance of trying these? Thank you I will try to put a link on to some of the research into Gabapentin Gel. Thanks.

Comments: 1

What has been helping ME (much less pain over time!!)

Wed May 16, 2018 3:43 am by leoscc

Hello everyone! I vanished for quite some time as my life became consumed by not only this but other daily responsibilities as well. Shortly after my diagnosis, my boyfriend f 3 years left me as he did not want to deal with this. It left me broken for a while but also gave me time to figure out what the heck was going on. So, I will write out a quick list of my symptoms and what helped me.

1. I …

Comments: 0


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.

Casscass09

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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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