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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 …

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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 …

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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

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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 …

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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 …

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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 …

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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 …

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New and need some help

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New and need some help

Post  LindafromNJ on Wed Feb 21, 2018 4:30 pm

New to this site ad trying to figure out how it works.  I am trying to post as a new member so I am hoping this goes thru.  I am a senior adult and have just been diagnosed by the Drexil Vaginitis Center to have vulvodynia along with Vestibulitis (not sure if spelled correctly).  My symptoms are vaginal burning, itching, soreness around the vaginal opening with one spot in particular.  Some days are better than others.  I had something like this last April after a labia biopsy and also had Lavatore Ani.  I was going to physical therapy which helped the Levatore Ani.  It all went away for 6 months and now the vaginal issue has returned.  The vaginal creams all say external which is confusing if they are vaginal.  My issues are around the entrance and a little inside.  I have Aquaphor which I have not tried and the Vaginitis Center prescribed a cream that is compounded with antidepressant, nerve pain killer and something else.  Have to get from compound pharmacy.  I have concerns about the cream as I heard it burns more than the condition it is treating. I live in New Jersey where I see no support groups as far as meeting and talking in person.  Would really like to talk to someone.  What have others been using?  Oh and by the way I have been on Estrace Cream for the last 8 months for vaginal atrophy.  I am so depressed but have a wonderful husband that is supportive.  I am retired and want to enjoy my retirement but in discomfort.  Any help is appreciated.  Thanks.  ps.  I am not the most computer literate so don't know what is meant by attach files are for. Please explain.

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Hang in there!

Post  Sad on Thu Feb 22, 2018 12:49 am

I am also new to this site so I can't really offer any help but to say that you are not alone. I sometimes feel like if I were to try to explain the problem to others that people would look at me like I'm from another planet. I too am in my 60's and my husband is very supportive also. I've had this problem for 20 years and have tried so many different things but nothing really helps long term in my experience.
I guess the only thing that helps (mentally) is knowing that there are others like me and I'm not some kind of freak.
If you find something that works I'm sure we would all love to know about it. ????
In the meantime I wish you the best and hope you find something that works for you,
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What has helped you

Post  LindafromNJ on Thu Feb 22, 2018 10:37 pm

Just wondering what you have done and what has given you temporary relief. I wish more people would respond to my post.

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Re: New and need some help

Post  fairlight10 on Fri Feb 23, 2018 1:12 pm

Hi I have had vulvar vestibulitis for almost 6 years. I was given Nortriptyline 20mgs and it started to help within a few weeks so I have stuck with it, because it is not a quick fix it can take months for you to feel comfortable again. Also,acupuncture can bring relief by bringing down your stress levels and help you deal with this horrid condition. Some of you recently have made a connection with being stressed and this condition flaring up. For those ladies who are postmenopausal, there is a vaginal moisturising gel called YES.VM that I use. It is water based contains no irritants. It can be bought on line. I would not want to put lidocaine inside me but I have used YES.VM and it was ok. Hope this has helped you.

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post menopausal

Post  LindafromNJ on Sun Feb 25, 2018 6:13 pm

I m post menopausal and had vaginal atrophy so was put on Estrace Cream which helped for 5 months. Still on the Estrace but again have pain at the entrance of the vagina. This is so depressing

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Not much relief that I have found

Post  Sad on Fri Mar 02, 2018 1:52 am

Boy that's a tough one! I found that cutting out all soy products gave me some relief but not as much as I had hoped.
I was on nortriptyline for awhile but that didn't help much either.

When it is really bad, sitting in a very warm bath (as hot as you can stand) sometimes temporarily helps. I also tried some special cream (can't remember the name of it) but that didn't really work either.

I am not willing to do any kind of surgery even though some people says it helps, I've also heard other people say it was a nightmare.

I was seeing a physical therapist briefly who said that working on your pelvic floor muscles helps.

The only thing that really helped for about six months was numbing shots they inject directly into the areas that have pain, but it hurt like heck and caused a lot of bleeding. I wouldn't do that again, it was quite traumatizing.

I wish I could offer you some better options as I also wish that I could find.
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RE: New and need some help

Post  Antaea on Fri Mar 02, 2018 7:28 pm

I am 68 and got have my diagnosis since nearly 2years, after an episode of one year in 2008 due to very low estrogen levels. In my case, the V is linked mainly to hormones, but this is only one aspect. I got my diagnosis 6 weeks after onset, and have taken Gabapentin since.Together with Ovesterin cream (Estrace in your part of the world), I am pain free more or less. After major stress over a long time I normally get a flare, where I have to increase the Gabapentin and also have to take HRT for one month, half a tablet each day. (Otherwise my migraines are back...) The last flare lasted 7 weeks. Now I'm back to 400 mg Gabapentin every 12th hour and Estrace cream twice a week.
It is very important to educate oneself about the different therapies and treatments. You will find an "awsome" lot of intormation here.
I also recommend to try Gabapentin. Amitryptiline is (at least here in Scandinavia) a Second Choice, it is only prescribed after at least 6 months of Gabapentin, when this drug does not work properly. It has very severe abstinence effects when you stop the medication, and some can become irreversible. Both drugs alter the perception of pain impulses in the brain. They are not pain killers.
Gabapentin is much more gentle and you can take a fairly high amount.... (3600mg a day).
During my flares I also used Tramadol at night sometimes and Parcetamol/Codein tablets. (Don't know the brand names in English). Lidocain/Xylocain also does help, even it burn in the beginning. But that is more a feeling of local heat. Cotton underwear, rinsing with lukewarm water after every visit of the bath room, using only washing oil, maybe some food changes..... I use a lot of coconut oil several times a day. I even eat a teaspoon of it every day.
For making a long story short: Everybody has her own kind of V. For us seniors, essential V often is linked to estrogen levels. What helps me, must not help you. Information is crucial, finding out what helps, too, without trying a lot of different ointments "downstairs". An equal communication with doctors and health personal, maybe demanding a promising therapy/treatment.
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Tramadol worked for awhile

Post  Sad on Sat Mar 03, 2018 1:11 am

I did use tramadol for awhile but after using it for quite a long time it started making me extremely itchy. I would usually take it at night to help with the pain so I could sleep, but when it made me itchy thenI couldn't sleep because of that. So the short of it is I can't use it anymore.
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Re: New and need some help

Post  davesjen on Sat Mar 03, 2018 12:48 pm

Go to Target...as fast as you can get there...Vagicaine...their house brand, less than $3.00 a tube...it’s the only thing that’s kept me alive - works better than ANY prescription med - burns a little at first , but, nothing compared to the pain I’m used to everyday...and then numb...for a few blissful hours, I can feel nothing...blessings to all my sisters out there who suffer...

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vagacaine

Post  LindafromNJ on Sat Mar 03, 2018 10:54 pm

Doesn't that burn if it gets inside? My burning is at the entrance of the vagina.

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Re: New and need some help

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