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» New here would very much appreciate advice at the end of my rope
Fri Jan 11, 2019 1:46 am by Jma990o

» Diagnosed Recently
Tue Jan 08, 2019 3:55 pm by flissyg

» Looking for suggestions or encouragement
Thu Jan 03, 2019 11:09 am by Gaby

» Clinical Trial for Vulvodynia Treatment
Wed Dec 19, 2018 7:13 pm by wramirez

» New and need advice and help
Thu Dec 13, 2018 9:48 am by Derry59

» Things that have worked for me
Tue Dec 11, 2018 11:32 am by Amethyst

» Found relief after more than 15 years of pain!
Tue Dec 11, 2018 11:17 am by Amethyst

» I'm new to this forum and would love some advice! :)
Tue Dec 11, 2018 3:06 am by Cin124

» I think I know what causes vulvodynia-it's the memory of pain
Sat Dec 08, 2018 1:24 pm by foxysugarpants

New here would very much appreciate advice at the end of my rope

Wed Jan 09, 2019 9:09 pm by Jma990o

This might be a little long but it's been such a long time I've even been able to talk about my problems openly thank you in advance for any helpful advice.
So ok I'm 24 I've been having this problem for over two years seen quite a few doctors and obgyns alike and nobody will take me seriously I have had a few utis and yeast infections and even bv once and this all started after one of the utis …

Comments: 2

Diagnosed Recently

Tue Jan 08, 2019 3:55 pm by flissyg

Hi All,

I’m so glad I’ve found a place where there are others who understand how I feel!

So this is my story:-

I’m 36,  and 4 months ago, whilst innocently sitting in bed reading I experienced a very sharp stabbing pain in my clitoris. It last only a few minutes and then subsided as quickly as it came on. It put it down to “one of those things”.  The following morning I woke up …

Comments: 0

Looking for suggestions or encouragement

Sat Jan 13, 2018 12:10 am by ryn207

Hi there. I'm 25 and have been dealing with this for over a year and a half and I'm really starting to lose hope this will ever stop.

In July of 2016 I had a yeast infection. When Monistat didn't work I went to my gynecologist who prescribed Diflucan. When the itching didn't stop she retested me and found that my yeast infection was gone, but I now had a bacterial infection. After taking the …

Comments: 6

New and need advice and help

Wed Dec 05, 2018 3:26 pm by Cin124

Hi everyone,

About three months ago, I started having vaginal and vulval itching. Then, about two months ago, my vulva started to feel painful and look swollen, so I went to the doctor. I was tested for herpes, chlamydia, and gonorrhea which all came back negative. I also had to do a vaginal swab test and the only thing that came back positive was yeast infection. I was prescribed hydrozole …

Comments: 4

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: 13

Hello. Happy to have found this group.

Fri Dec 07, 2018 9:01 pm by foxysugarpants

I am new here and hope to gain some insight into my vulva pain. I suffered for a long time not realizing that there are ways to feel better. I saw the Dr. yesterday and I am starting P/T pelvic and valium suppositories. queen

Comments: 0

Had this for 5 years, looking for people who understand

Sat Oct 06, 2018 9:46 pm by blackberrie

Hey all. I'm really struggling to find anyone in real life who can really understand what I'm going through. I've had vestibulodynia for 5 years now and I'm single. Obviously it has completely affected how I approach dating and sex and the fact that I can't really talk to people irl about it has made me feel very lonely. I've found that a lot of the women who have this problem are married and …

Comments: 3

Anyone have pain with urination?

Tue Oct 16, 2018 2:35 pm by mertzwl

Hi everyone - I can't believe I've been dealing with this for almost 10 years and an appointment scheduler at a urogyn office is the one to suggest I look into vulvodynia. Honestly, I don't care, I just thankful I might have an answer.

I have pain in one specific spot right around the urethral opening so it always coincides with urinating (it's not a uti). Does anyone else deal with pain …

Comments: 6

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: 4


New here, my story and looking for advice

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New here, my story and looking for advice

Post  rachiecakes on Wed Apr 26, 2017 9:02 am

Hi All!

I was really hoping to get some feedback from everyone here - it's very hard dealing with an issue like this because no one really understands what I'm going through!

Im 28 years old I've had interstitial cystitis for 3 years - but never an vaginal issues. About 6 months ago I got a yeast infection following a course of antibiotics - similarly I developed IC after a bad UTI. The itching and burning never subsided and since then I've had almost...a dozen negative swabs that show no sign of infection. I don't have redness, swelling or abnormal discharge...my vagina looks...completely totally normal. Unfortunately as you can imagine - the pain, burning and sometimes itch has never subsided. I have periods of relief, periods of mild irritation and sometimes times of terrible pain that makes it hard to walk. The pain is all over - not just my vestibule. Some days my anal area is so sore, around my clitoris and labia.. even my pubic hair hurts. Other times I feel almost normal and sex is normal etc. Sometimes it feels like I have a sunburn - it feels like the skin is so dry (even though it's NOT and theres no visible issues and I'm covered in coconut oil)

Again I get swabbed when I'm feeling good - all clear. I get swabbed when I'm in terrible pain - all clear.

The gynecologist I saw said "this will go away on it's own" but sometimes the pain is terrible!

I've done tons and tons of vulvodynia research and it does seem like all signs point to vulvodynia...but a lot of research says generalized vulvodynia happens more with older women. I already have IC so is my pain less likely to go away on its own? Has anyone had a similar story - or any helpful tips? I've changed all soaps, use coconut oil, wash with emollient etc. all those first line options. I've been researching meds but sometimes it all feels very hopeless. If I go on meds do I have to stay on them forever?

Thanks Smile

rachiecakes

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Re: New here, my story and looking for advice

Post  fairlight10 on Wed Apr 26, 2017 4:19 pm

I would stop all lotions and potions in that area firstly. I have been on nortriptyline 20mgs for 5 years.I have tried to drop to 10mgs but I get irritation start up again. 20mgs keeps me comfortable and sane. If I have to take it for the rest of my life then, I will. I could not go back to that pain again. Vulvodynia can affect the urethra as well as the other areas you have experienced this condition. It can affect females of all ages. Women who suffer fibromyalgia, migraine, chronic fatigue syndrome, irritable bowel, intersistial cystitis are likely to suffer with vulvodynia. All these conditions can be helped with low dose antidepressants. I hope this has been a help.

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Re: New here, my story and looking for advice

Post  PainBlogger on Wed Apr 26, 2017 8:33 pm

If you go on meds and find they work, you can always try coming off them after a period of time. The meds may break the pain cycle so not be needed forever. I've had good results with duloxetine. You can read my pain background here http://vulvodyniasupport.forumotion.net/t2291-four-months-of-significant-improvement to save me retyping. Smile

I really understand your frustration. It really is a horrible problem to deal with. But people do get better.

PainBlogger

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Re: New here, my story and looking for advice

Post  Hatty on Fri Apr 28, 2017 2:43 pm

Has anyone tried Gabapetin for pain?

Hatty

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Re: New here, my story and looking for advice

Post  mary jane on Thu May 11, 2017 4:40 pm

sounds like the nerves are irritated. You could go on a low dose of ami or nortriptyline for a period of time and it should subside. It takes at least 4 weeks for it to work..for me it took 3 months almost but the symptoms dissapeared
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Re: New here, my story and looking for advice

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