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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 …

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 …

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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 …

Comments: 5


Acupuncture gave me my life back!

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Acupuncture gave me my life back!

Post  earthbalance on Sun Jul 21, 2013 9:25 pm

Hello everyone!

I was diagnosed with vulvodynia in January, after 5 visits to various doctors, gynos, and even a urologist. The pain set in during the second week of December, and was DEBILITATING. I was unable to do almost anything- work out, WORK, go to class, and I was entirely unable to have sex with my boyfriend. I felt like everything I loved (I was training to compete as a powerlifter so losing the gym was a devastating blow) and my basic human functions (sex with the person I love) were being taken from me and I was, of course, miserable. During my last gyno exam I asked when I would be able to have sex again and my gynecologist said, "I can't even get a finger in you, do you think you can even HAVE sex?" Of course I didn't mean as I was, I was just hoping for a sunny vaginal forecast for the future. But my future (from her perspective) was grim.

I received my diagnosis (the end of the world aka vulodvynia) and information about applying for disability (because my pain was so intense) and was told "This pain won't be the rest of your life, but it will be your life for the next little while--maybe a year or so. Your life isn't over, it will just be different. Is your partner understanding? You may not be able to have sex again soon, or maybe at all. But there are other ways to be intimate. You should get health insurance because you'll need to go frequently to a gynecologist and try different methods of pain management until you find one that works for you. Hopefully it won't be a long process."

I left feeling total helpless, my life snatched away by endless burning and pain. I'm 30 years old, fit, and prior to this vulvodynia, was healthy and happy! I was visiting my Dad when I received my diagnosis and he asked if I would be willing to try acupuncture. I told him I was willing to have my leg cut off to make the pain stop, so he made an appointment.

I will preface this by saying that my results (time-wise) are not typical, but the outcome (being pain free after acupuncture treatments) IS.

My vulvodynia has two kind of pains: an external burning that feels like acid had been thrown on me, and an internal pain that feels like open, swollen wounds--almost like the inside of my vagina was used as a scratching post for cats. Both types of pain were constant. I could barely SLEEP. Sit. Walk. Do ANYTHING.

Every day I used to rate my pain to let my boyfriend/parents (who were very worried about me) know how I felt. I went into my first acupuncture appointment at a 7. I explained this to my acupuncturist, and at some point during the treatment, she asked me to rate my external burning pain. I instantly started to say 7... but then I realized I barely felt ANY pain. I rated it at 2, and she was delighted and got to work on my internal pain.

Unfortunately, the internal pain stayed throughout my treatment, but I was SO HAPPY to be rid (even temporarily) of the burning that I considered the session a huge success.

Over the next couple of days my pain (burning AND internal!) diminished more and more, much to my disbelief and delight! 3 days later I came home. That night as my boyfriend and I laid in bed, I told him all about my treatment, how I felt my pain start to prickle and then... just evaporate off of me, and one thing lead to another and WE HAD SEX... WITHOUT PAIN! It felt great! We hadn't had sex in two months, and I was so happy and relieved and overwhelmed that I cried. I had thought that part of my life was gone forever. I felt like a human again.

A few days later, my pain came back. But long story short: I found a local community acupuncture clinic where I live. For the next 2 months I went twice a week ($35 a week), and each session would keep me pain free until the next. I was able to have sex, work out, use tampons, and be more or less normal.

Now I go only every week and a half, sometimes less. I still get pain when I'm stressed out, but it goes away within a day or two.

If you've made it through this story and relate, pleeeeease give acupuncture a try. Don't expect a miracle at the first session, but, I was told, generally within 7 sessions there should be change. Before you pump yourself full of drugs or do anything drastic, see what acupuncture can do for you! You don't have to believe in it for it work, just like anything else. (Just like you can disbelieve that 5 cups of coffee won't wake you up but if you drink them your belief won't stop you from bouncing off the walls!)

Acupuncture gave me my life back, and I hope if can give you yours! Very Happy

earthbalance

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Re: Acupuncture gave me my life back!

Post  Finch on Sun Jul 28, 2013 1:52 pm

Thanks for sharing - this is a great success story. I'm so pleased you found something that works Smile
I have often wondered about acupuncture, as many people with vulvodynia have certain trigger points that can be linked to other parts of the body.
What was it like? Did it hurt or feel odd?

Finch

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Re: Acupuncture gave me my life back!

Post  Sebby (Admin) on Sun Aug 18, 2013 10:51 am

Thank you for this, I'm definitely thinking of trying acupuncture. Is it better to try and find someone with some understanding and experience with vulva pain?
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Re: Acupuncture gave me my life back!

Post  tinkerbelle2 on Tue Nov 19, 2013 1:31 pm

Hi, earthbalance!

Acupuncture is something I've been considering. My gp has mentioned it a couple of times. Not sure if you still post on here but has the pain still stayed away? ! Glad for you.
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Re: Acupuncture gave me my life back!

Post  Alana3 on Tue Nov 19, 2013 1:55 pm

I tried it it works but the pain comes back unless you do it consistently at least for me but it relaxes you like no other give it a go cant hurt

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Re: Acupuncture gave me my life back!

Post  mary jane on Tue Nov 19, 2013 6:03 pm

interesting- I'll list it down
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Re: Acupuncture gave me my life back!

Post  young.sufferer on Thu Dec 05, 2013 1:51 am

This may we a silly question, but are you just receiving normal acupuncture or are you getting acupuncture on your actual vagina? Wondering what I should prepare myself for!

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Acupuncture help for V

Post  neesegjohnson on Thu Dec 08, 2016 3:41 pm

So, I have had 4 acupuncture treatments. Before I went I specifically told her I had vulvodynia so she would focus on the V area. After the 1st visit it felt better for a couple of days then returned. After each time, it has increasingly gotten better. I have had a one day flare up in the last 2 weeks and I believe it's a combination of things but definitely believe acupuncture helps cure vulvodynia. My girl said she has helped other women with V as well. I am now going every other week and as needed. I have had vulvodynia for 5-6 months. My plan is to gradually go down to once a month at some point. She puts only a few needles in, they do not hurt. She puts one on each side of the vagina close to that area but def. not in the vagina. Try it. I have done a lot of research on the problem and acupuncture stimulates your bodies natural healing abilities. Btw..I have pretty much tried everything!

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Re: Acupuncture gave me my life back!

Post  Bx11 on Thu Feb 22, 2018 11:25 pm

Can anyone tell me where they have the needles placed as just starting to explore this option with my Physio

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Re: Acupuncture gave me my life back!

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