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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: 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: 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

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: 4

6 year sufferer but I’ve found some hope

Wed Oct 10, 2018 1:33 am by Npage14

Hey, ladies! I’m new to this support group, I’ve thought about doing something like this for a while so I wanted to try this out! I’ve had vulvodynia for 6 years now, I am self diagnosed. I’m 20 now and the pain started when I had my first encounter with sexual contact when I was 14(I still remained a virgin though it was fingering). For a couple years the pain was so bad I could hardly …

Comments: 0

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


Do I have vulvodynia?

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Do I have vulvodynia?

Post  Mvp1022 on Sun Apr 06, 2014 6:10 am

So, I have been to only 1 gyno (multiple times) for my symptoms, with no relief. So I took to searching on the internet. Right now I only have access to the one gyno I have been seeing. As of May I should be able to able to see other specialists. Please tell me what you guys think in the mean time.

First, i guess I'll start with the fact that i didn't get my period until freshman year of high school. And it was anything but normal i wouldn't get it for months and then I would get it for weeks at a time. I started the birth control my senior year to help regulate.
I didn't feel any symptoms. A couple months after I stopped taking them, I suppose just out of laziness and I was rarely, if ever having sex. I also don't believe ive ever had a uti or yeast infection. I don't know if this is relevant but I thought it was worth the mention.

I began seeing in my boyfriend in sept 2011. We began having sex in dec and by jan I began birth control pills again. After about 3 months of the pill I decided to try the depo shot.

February 2011 is the first "flare up" I can remember. I actually thought it was a uti (bc I never had one and just associated vaginal pain with utis. I also did have the urge to urinate frequently but nothing came out.) I took your standard uti medicine and within a couple days I felt better.

Until I felt the pain once again. The pain would be horrible and it would wake me up all through the night while I sat with a warm rag down there, crying my eyes out. It was occasionally a burning, raw feeling. Other times it felt like extreme irritation. This persisted until July which was the first time I saw my gyno about my pain. All she did was give me the standard talk no scented soaps and laundry detergents, cotton undies, etc. she also told me to try some light cream that was for irritated skin, not even specifically for your vagina, which worried me. I tried it anyway. The cream didn't help, but changing all my soaps and laundry detergent did help slightly.

I saw my gyno a couple more times, none of these visits helped at all. She would give me the yeast infection tests and all that good stuff. They all came back
Clean. She gave me a dose of yeast infection medicine "just in case." No surprise it didn't help. About a year later I got suspicious that depo shot made it worst, so
I decided to switch back to the pill. My gyno insists that if it was a reaction to my bc I would be seeing symptoms in other areas too. I think this helped a lot. My symptoms seemed to lessen from a pain scale of a constant 9
Or 10 to an occasional 7 or 8. I still feel the pain every day, but sometimes feel manageable, other days not so much

At the worst point of my pain I was irritated down there ALL THE TIME. Then at some points it would burn and feel raw down there. I've tried to look for triggers but honestly besides the depo I can't find a constant one. Also my change from thong to cotton under wear seemed to help. I always have used plain dove soap anyway. I try to use sensitive skin detergent but sometimes my laundry gets mixed in with the rest of the laundry and I notice no difference. Sex actually doesn't hurt that often. Though sometimes the day after it gets worst, but that's only sometimes. The final big thing I've noticed is it gets worst right before and in the beginning of my period. It also seems to get worse if I get very stressed and anxious. Oh and I have one last symptom that makes me question if I do have vulvodynia bc I haven't seen anyone else mention this system. Sometimes my pee smells very much like ammonia. I've been using Rephresh vaginal gel that's supposed to Help with balancing ph levels. This sometimes works.
Sometimes doesn't. This is ruining my life though. I rarely ever want sex. Work is miserable many days. I feel antisocial. I never want to go out bc that involves me wearing underwear and pants. Sometimes it
Makes me so sad that i might have to deal wth this pain forever.

I will go to a different dr when I am able until then what do
You think? I start my first full time job Monday and I'm literally terrified I'm going to be in pain all day.

Sorry this is so long and I probably seem
Illiterate. I'm tired and on my phone but I wants to get some feed back. Thanks in advanced.

Mvp1022

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Re: Do I have vulvodynia?

Post  Delilah1 on Fri Apr 11, 2014 9:26 pm

Hello and welcome to the forum. There are many wonderful ladies on here. Read through all the posts. I'm sure you will find hope and encouragement. I have been dealing with this condition for 18 months. I have been improving slowly. When this first started the pain and burning was constant at a level 9 or 10. Sex felt like being cut with razor blades. Now the rawness and irritation come and go. I have some days when I feel normal for hours. I continue to do the stretches and exercises, internal massage with dilators, Crisco for moisture, deep breathing, healthy diet. There are good books out there to read. Ending Female Pain by Isa Harera was most helpful to me. I am on no medication but continuing to get better. Don't lose hope. This is not a life sentence! Baking soda sits baths helped a lot too. Read some of my previous posts. Take care
Delilah

Delilah1

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Re: Do I have vulvodynia?

Post  Delilah1 on Fri Apr 11, 2014 9:28 pm

I forgot to add that my urine had an unusual odor too!!! No one else mentioned that. I no longer have that frequently. But once in a while it happens.

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Re: Do I have vulvodynia?

Post  LegendOfAspen on Sat Aug 15, 2015 4:29 am

I realize that this post is very old so you may not see it, and it's very possible you have vulvodynia, but given all of your UTI-like symptoms, habe you considered intersistial cystitis?? That also seems like a likely probability. Hope you're well by now!

LegendOfAspen

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Re: Do I have vulvodynia?

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