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Newly diagnosed

Tue Oct 10, 2017 8:37 pm by Brevispink

Hello everyone. I have recently been diagnosed with unprovoked vulvodynia and would really appreciate some advice and support. I have had a chronic urine infection for 16 months and was on antibiotics for 9 of those months. I have been very uncomfortable for the entire time, but now I have absolutely unbearable stinging and burning all day with itching too. The infection has just about gone, …

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Recent "Poke" Pain - So Confused/Losing My Mind

Thu Oct 12, 2017 9:26 am by kelseybeth23

Long Story, but I am losing my mind and getting really depressed, so if I tell the full story maybe someone can help me.

Back in August I started to get an itch down there. Normally, in the past, when this would happen, I would change the way I wore my clothes, take more baths instead of showers, and use Monistat. This time, after about two weeks of no relief, I started to get concerned. I was …

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Does anyone else experience this?

Sat Oct 14, 2017 5:21 pm by Angelmegs

Hi— im new here. Im incredibly desperate so if anyone has any suggestions i would greatly appreciate it. Im a 20 year old female with vulvodynia and vaginismus. I was on the birth control pill (junel fe lo estrin) from age 13-18 because of severe menstrual pain. I used the xulane patch for a few months when i was 18 but eventually stopped BC altogether because it interferes with my med for …

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Post Full Vestibulectomy - 5 Years Later - Please Read

Tue May 02, 2017 6:18 pm by jen007

Hi All,

It's been awhile since I've written a new topic on the forum. Wondering if any of the same ladies are still here. I've come back to update you all on my post vestibulectomy results. I can't remember if I've done an update on my current state, so forgive me if this is repeated information... I can't remember how to view my old posts! Anyway, let me get on with my update.

For 4 years post …

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Do you ever worry that you're making it up?

Fri May 27, 2016 6:50 am by Lucci

Hello,

I was diagnosed with Vaginismus and Vulvar Vestibulitis 10 years ago. I was 18 and scared and moving across the country for college, but luckily was able to find a doctor who specialized in 'Women's Health' who immediately put me into physical therapy. Long story short, I've been in and out of the system ever since.

A few years into treatment, I had the diagnosis of PTSD added on for …

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Clitoris Issues

Tue Apr 28, 2015 8:17 pm by January

I am going crazyyy trying to figure out what's wrong. Please does anyone else have an issue similar to mine? I'm only 22. So, basically when my clit is lightly rubbed, there is no feeling. However, when rubbed vigorously and directly, the burning and tingling sensations shoot down my legs and feet as if coming to the end of an orgasm but with no good feeling leading up. It's so strange. What …

Comments: 2

Cured of Vulvodynia

Wed Aug 17, 2016 1:39 am by angelique2016

I used to post on this forum a long time ago and told everyone of how I was cured of my vulvodynia by a (Melbourne Australia) female dermatologist, she put me on very low doses of Nortriptyline (Allergron) for pain management about 10mgs I believe it was, and she also had me use Advantan Fatty Ointment (not the cream) (although I saw the cream for sale on ebay from germany) so it might help, as …

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Vulvodynia and IVF? Anyone done this? What does it do to the vulvadynia?

Sun Jul 30, 2017 1:03 am by Carolyn4

Hi everyone,

I have had vulvodynia since age 27--I am now 43 and it has been in pretty good remission.  I control it with acupuncture and herbs, and some cranial sacral therapy.  I have a 5 year old, had a pretty uneventful pregnancy which ended in a c-section.  My VV worsened after that, and I have worked hard to get it back under control (it took over a year to get it back into pretty good …

Comments: 1

Partial Vestibulectomy

Mon Jul 31, 2017 6:44 pm by JGD13

Hi all i am new here.
I had a partial vestibulectomy 21/7 for my provoked vulvodynia.
After a painful few days and feeling quite uncomfortable it seemed to get better. 1 week after i noticed some white stuff and gloopy discharge, it wasnt smelly or itchy but i got a check up at the gp surgery and the doctor said the stitches looked fine and i could just have a touch of thrush. He said this is …

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New to sudden yelps and hops in public...

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New to sudden yelps and hops in public...

Post  Tinabeauxbina on Thu Jan 26, 2012 10:10 am

Pain started in Dec 2011 and I've had it off and on since. Amazing. Who knew what surprizes were in store for so many unsuspecting women. It's my left labia that's affected. The painful area is about the size of a quarter, and there are two things that I do for it when the pain (cigarette burn/razor cut) hits; I am VERY careful with my personal hygiene (wiping/washing) and I use good ol' vaseline to cut down on any friction. I was horrified to read that the painful area can actually increase in size for some sufferers. Besides the pain I find it annoying to be so aware of my vulva all day and into the night for weeks at a time. It's like having a monkey on my head, constantly pulling my hair! Don't get me wrong, I like my vulva, I just don't want to have it on my mind like a bad dye job. Anyone wonder if vulvodynia might be somehow connected to sexual abuse or incest? Just wondering...Tinabeauxbina

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Re: New to sudden yelps and hops in public...

Post  mmorgan on Thu Jan 26, 2012 4:45 pm

There are some "theory's" as to a link with sexual abuse, that the pelvic floor tightens. Have you got your pelvic floor checked?
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Re: Pelvic floor...

Post  Tinabeauxbina on Fri Jan 27, 2012 2:41 am

Pelvic floor...loose or tight...my Doc says mine is loose. And thanks for answering! Smile

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Re: New to sudden yelps and hops in public...

Post  lolainslacks on Fri Jan 27, 2012 11:22 am

There is a theory that sexual abuse can rewire the brain, so that the nerve centre (the part that deals with pain) no longer works correctly. You associate the general vaginal area with pain and trauma, so the brain tells the nerves they are in pain when they shouldn't be. I personally believe this to be true. Obviously not for all women, because there are a million different causes, but for some I think this is accurate.

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Topic review

Post  Tinabeauxbina on Fri Jan 27, 2012 8:02 pm

Well, this theory certainly explains why merely wiping myself with toilet paper feels identical to the sensation of my father grinding his whiskery saturday chin into my three year old vulva. It also explains why I can tolerate such extremely painful sensations with a kind of grin and bear it attitude, since I learned how to do so at a very early age. Incest is the gift that keeps on giving. Yes, there are a million different causes for vulvodynia, but for me the links to sexual abuse speak the loudest. Some of the women on this forum have written about having painful vulvas since childhood and that their daughters are experiencing vulva pain at a very young age; I hope for the best, but have to wonder about sexual abuses ugly head rising in their lives. I thank you very much for sharing this with me, Lolainslacks. I consider you to be a friend. sincerely, Tinabeauxbina

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Re: New to sudden yelps and hops in public...

Post  lolainslacks on Fri Jan 27, 2012 9:50 pm

Aw, you're so welcome! I think it's the cause of mine, which sucks, because it's like, when you've suffered abuse you already have a ton to deal with emotionally, but on top of that sex continues to be traumatic because of the pain. I've read dozens of theories but none of the suggestions that work for others (such as cutting out certain foods, stopping use of chemicals, or going to physiotherapy, etc) have helped me at all. And my pain is only on contact, mostly internally. Like you said, this theory is the one that jumps out at me. I've read quite a lot about it and it seems really applicable.

I'm sorry to hear that you also had to endure something so awful.

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Re: New to sudden yelps and hops in public...

Post  Tinabeauxbina on Fri Jan 27, 2012 11:03 pm

I'm sorry you experienced sexual abuse, too. I read about the different treatments and surgeries for vulvodynia, and the thought of surgery makes my hair stand straight up. It's beyond my strength to allow anyone near my vulva with their hands and knives and eyes...I'm a total control freak about my body; even taking care of it with a normal pelvic and pap is a mental and emotional wrestling match. My Doc is a female and understands how I feel, but she doesn't cut me any slack and insists that I can and will have yearly exams, and so I do. But, man, it's tough! It's like I have to put medical care into a compartment all on its own to be able to handle it at all. That's why vaseline and toughing out the pain are my treatments of choice since I can do it on my own and feel some control. Pain is an old familiar friend, after all. You have opened my eyes to the fact that internal vaginal pain is not a normal experience. I have always had painful sex; it's the vulva pain that's new.

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Re: New to sudden yelps and hops in public...

Post  lolainslacks on Sat Jan 28, 2012 12:14 am

I totally understand that, medical examinations are a nightmare for me too. I am not sexually active, and have never been because the pain has always been so bad that sex has never been possible, so I have never had a pap smear, but any other check-up is horrible. Physio was so hard for me because I too am terrible at letting anyone near that part of me.

I have only very recently started talking about my abuse. Before a month or so ago I had never ever told anyone, even online, because I just didn't want to think about it, so it's still difficult for me to talk about in person. Which means that I haven't been able to tell any of my doctors. They know about my pain so they are careful with me, but I suppose they would be more understanding of my reluctance to be touched if I told them everything. Maybe one day.

Have you tried using a lidocaine gel/ointment? I use it and it is an absolute miracle product for me because it removes ALL of my pain. When I apply it before using dilators, I can use all of the dilators, even the biggest ones, which means that in the future, pain-free sex might be possible. It's great because you apply it yourself like the vaseline, meaning you can go at your own pace and no-one else has to be involved.

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Re: New to sudden yelps and hops in public...

Post  Tinabeauxbina on Sat Jan 28, 2012 6:19 am

Lidocaine gel/ointment...it does sound like it could be a workable solution. I never thought of it as usable on mucus membranes however, because of the possible absorbtion of too much lidocaine: is it safe? It has a big warning about absorbtion; how much and how often can it be used? How long does the pain easing effect last? Is it a new product? Did your Doc give you a prescription for it? Does it cost much? Do you have a male or female Doc?

If I may ask, are you in therapy for the abuse? Therapy helped me a lot, especially with communication. For me, the hard part about therapy wasn't remembering and talking about the actual abuse itself. For me, the hard part was clearly looking with open eyes at just what damage had been done to my life, how pervasive sexual abuse is and how far reaching into my mind, body and spirit the damage is. Amazing. I've been sexually active since I was three. Kinda early, if you ask me, but nobody bothered to ask, least of all my father. I'm not sexually active now, either, and discomfort certainly has a part in it.

Question Dilators? Question

I'm open to talk about any subject, but I'm also respectful of other peoples limits; if you do not care to discuss a subject let me know and I will respect your request without questions and without judgement, ok? Other peoples lives are none of my business unless they want to share. silent

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Re: New to sudden yelps and hops in public...

Post  lolainslacks on Sat Jan 28, 2012 8:59 pm

I don't mind sharing here. It's fine for me, because we're not face to face, and we are all here for intimate pain so I trust you guys. I'm comfortable talking about anything with you all.

I'm not currently in therapy. My local rape crisis centre offers free counselling for anyone who has been abused, and I went to one session a few weeks ago. It was arranged that I would go back weekly for as long as I need, but I haven't been back since. It was really great, the therapist was lovely and it was all fine. But I just felt overwhelmed. I have never spoken about it out loud in detail before, and I think in the first session I was in such a rush to just get it all out that I said too much too fast, and afterwards felt really weird and uncomfortable. I plan to go back in a while, when I'm ready. But right now I don't feel like I can talk about it face to face with anyone.

Dilators, yes, I use them sometimes. They look like this -- http://www.soulsourceenterprises.com/images/ordering/orderpic_sm.jpg

You just lubricate them, then insert the smallest one, and sit with it there inside you for a while breathing deeply and trying to relax. Then once you're comfortable with it and it doesn't hurt, you move on to the next one, gradually getting bigger over a long period of time. They are used to allow the body to get used to penetration, and primarily they help women who have problems with muscle tension as a result of expecting pain. They start out as small as your pinky-finger, and get to about as large as the average male. I have been using them for about a year. I was told to use them back when my doctor thought my problem was 'all in my head'. I don't have problems with muscle tension anymore, and I use them only very occaisionally now, just to keep my body used to the feeling so that when I do start having sex, it's not too much of a struggle.

The lidocaine is amazing, but I use a very specific type that I think might only be available in the UK. It's called 'Instillagel'. I get it prescribed. I have to use this as opposed to the actual lidocaine ointment, because that stuff is no longer available where I live. Instillagel is a similar type of thing, just a numbing gel that is mostly used by doctors before catheterisation. My gyn gave it to me originally, and many women in the UK with vulvodnia are being given it to use, so I'm sure it's safe. You should ask your doctor about it, or about any other kind of lidocaine ointment. She will be able to answer all of your questions. I have been using HUGE amounts of the gel for months and months now, with no problems. Unfortunately, some women so react badly to it, but it all depends on the individual.

I apply it, then wait five minutes, and then my pain is gone. I am pain free for around two/three hours. I really recommend giving it a try.

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Re: New to sudden yelps and hops in public...

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