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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


Just want a solution for a good quality of life

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Just want a solution for a good quality of life

Post  mariah2558 on Thu Dec 08, 2016 9:49 am

Hi all,
My name is Mariah, I am 19 years old and I was diagnosed with vulvodynia in November of last year 2015. They finally diagnosed me after I've been dealing with this condition for over 12 years. I can remember as far back to being 5 years old complaining to my parents that my pee pee hurt and it just got worse and worse as I grew older. I wasn't in nearly the pain I am now though. I can remember my later childhood years always being uncomfortable when I was wear tight clothing always getting into a warm bath and having these sharpe, burning and uncomfortable pains down in my vagina. When I would go see my doctors they almost kind of blew it off. Said it was a yeast infection and as the problem progressed as I got older they told me it was just bacterial vagininosis. Just prescribed me with Dyflucan gave me topical ointments, some antibiotics when it was "bacterial vaginiosis" told me to use Monistat creams if it came back down the road and sent me on my way. Sometimes those things worked but only for a couple hours and then I was back in pain but after a day or so it would go away and my vaginal area would just be irritated but it always was so it was nothing new for me. Now then I'm entering into my adult years, I'm in my second year of nursing school, I have 2 jobs, and I work for the hospital here in town I can't bare living like this anymore. Some days I'm okay just my normal irritation but these past 3 months have been so extremely awful for me. I've probably been to the ER 20 times because the pain is so excruciating I can't handle it anymore and need something. At some points I've been in so much pain I didn't sleep for 28 hours because I was up pacing myself back and forth, in and out of the bath tub, bawling because the pain is just so awful. The worst part about everything, even worse than the pain, no one understands what you're going through. No one understands how much pain you're in and how badly it affects you and hurts. They thing you just need to tough it out or get a higher pain tolerance. My gynecologist that diagnosed me but me on the nerve blocking medication called amitriptyline we started at 25mg just once a day until my body got used to it and then stayed on 50mg for a month with little problems then every time I got a flare up she would just up my medication i got up to 200mg of amitriptyline before she switched me over to gabapentin 300mg 3x a day. Then she explained to me how she had only seen a couple patients with this diagnosis and wanted to me to get some relief. So she sent me to see a specialist in Omaha. I feel like this doctor doesn't listen to a thing I'm saying. Everytime I call saying I'm in pain her nurse tells me oh take deep breathes it'll go away use cold compressions or get in the bath. She acts like I hadn't already done that. Like I said been dealing with this problem for 12+ years when I start to get my awful flare ups I almost immediately jump in the bath tub. After weeks of hownding them I was in pain they finally did something beside medication. They gave me lidocaine/steroid injections. That ended up making me feel even worse. I currently go to physical therapy to work on not clinching my nerves so much and loosening up my pelvic floor muscles. My specialist has me on gabapentin 300mg 6x times a day and lidocaine 5% topical ointment to put inside my vagina and on the outside of the vulva and vulvlar opening. I have an appointment to see a urogynecologist and an appointment at the Mayo Clinic in Minnesota. I just need some advice on what to do? Did anything work better for anyone? I have heard about the Botox injections and the surgery did any of those significantly help anyone? I'm desperate for advice and need some help. I can't even work or go to school without having a flare up at least twice a week? I just want to live a normal life of a young adult because right now I don't do anything for myself. I don't do anything for fun because the thought of putting anything on besides very big and baggy sweatpants makes me cringes. I'm desperate for answers. Anything helps, thank you and god bless.

mariah2558

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Re: Just want a solution for a good quality of life

Post  fairlight10 on Thu Dec 08, 2016 11:04 am

I am so sorry you have suffered with this for so long. We all know on this forum what you are going through. Start reading the posts on this forum. They are full of information that may bring you the relief you are searching for. You sound as if you have primary vulvodynia. As you had it when you were so young. Have you any female relation who have suffered similar problems? I am on nortriptyline 20 mgs now. This type of medication is known as antidepressants but in low doses and I emphasis low can give some of us on this forum relief from the symptoms you refer to. Also, you have noticed that urinating causes you problems. Look at the low oxalate diet. Also, some other medications can cause irritation in that area. Omeprazole is one of them.

fairlight10

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Re: Just want a solution for a good quality of life

Post  PainBlogger on Thu Dec 08, 2016 2:50 pm

A quick summary of what has helped me: duloxetine, acupuncture, physiotherapy/PT (including dilators at home), and mindfulness.

http://vulvodyniasupport.forumotion.net/t2291-four-months-of-significant-improvement#14400 for the fuller version with some lifestyle changes you might want to try if you haven't already. And, as fairlight says, have a good read through this forum. It may well be that a combination of different treatments/lifestyle changes will help. Finding that combination can take a while but is worth the effort of trying things.

It's a horrible condition, but people do get better. I really hope the specialists you're waiting to see can offer new insights.

PainBlogger

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Re: Just want a solution for a good quality of life

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