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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 …

Comments: 7

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 …

Comments: 10

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 …

Comments: 6

Post Vestibulectomy

Thu Aug 03, 2017 6:15 pm by infinitelywondering

Heya,

I had my vestibulectomy (full) about a day and a half ago. I was very sick and poorly just after the op and experienced intense pain down there Sad

However, today I came home and have done the following things:

-washed with warm water
-applied manuka honey to the area
-ensured I wash at least 3 times a day and dab the area dry gently
-use frozen peas to stop the swelling

As of now I am …

Comments: 1

New w/ Secondary Provoked Vestibuldynia

Wed Apr 26, 2017 11:46 pm by Birdy

Hi everyone,

I'm here because I'm pretty sure I have secondary provoked vestibuldynia, even though my gyno is still "optimistic" it is not.  My problem started six months ago when I got my second UTI in as many months (after going 25 years of life without one) and then ended up with a bad yeast infection (also my first one ever) thanks to the antibiotics.  Ever since the yeast …

Comments: 3

Anyone from the PNW?

Sat Aug 05, 2017 7:54 am by jungleclover

I'm located near Portland and I would be really cool to actually meet someone with this issue. I think my roommate in college technically had this problem. She had an overgrown hymen removed and can't deal with penetration as a result. But she is gay so it seems like it hasn't been a huge problem for her (although we didn't talk about it much so there was possibly more to it than she let on). …

Comments: 0

Constant pain, I want to die.

Fri Jun 02, 2017 4:29 am by Meggiemay

I posted on here a few years ago but my symptoms went away with the inflammation. I didn't get so lucky this time.

For over three months, i've had terrible rawness, burning, soreness in the urethral/vestibule area and pressure/hypersensitivity in the clitoral area. I've also had some lower abdominal pressure and burning on my butt. I can barely walk! My gyno hasn't been much help. I'm on …

Comments: 22


Anyone else try Cold Laser therapy/ Low Level Laser Therapy for their vestibulodynia?

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Anyone else try Cold Laser therapy/ Low Level Laser Therapy for their vestibulodynia?

Post  Tired89 on Tue Jul 04, 2017 9:01 am

Hello everyone. It's been quite a long time since I've posted. I've been extremely depressed and bottling it all up. I've been seeing a pelvic floor therapist (it's only been 4 visits) for my provoked vestibulodynia and the only reason she can get inside of me to do myofascial release and to use the dilators is because I use BLT (benzocaine, lidocaine, tetracaine) ointment on my vestibule prior which numbs my entrance completely. Without the ointment, insertion of anything would be impossible. I also use a compounded cream of 5% lidocaine, 5% baclofen, 5% gabapentin and 4% valium internally to try to relax the muscles. Recently, what has started happening is after therapy, or inserting my meds and after the blt ointment wears off, my vestibule starts to burn, itch, swell and throb worse than I've ever experienced and it last longer and gets worse after every time I insert anything. My therapist wants me to take a break from therapy and she's asked if I'd considered vestibulectomy. I am horrified of that word, let alone of trying the surgery. One thing that gave me hope was another procedure with a laser a woman on this forum had done that she had great success with. It's called cold laser therapy or low level laser therapy (LLLT). I messaged her, but i don't know if she visits the forum anymore and she posted about her procedure back in 2011. Has anyone else ever heard of this or tried it? I'd like to know where I could get it done or at least speak to a doctor about it. My physical therapist doesn't know anything about it and I can't seem to find out anything else about it other than articles and trials that discuss the success rate and how the procedure is non invasive and does not negatively alter or disfigure the vestibule like vestibulectomy can.
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Tired89

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Re: Anyone else try Cold Laser therapy/ Low Level Laser Therapy for their vestibulodynia?

Post  mary jane on Wed Jul 05, 2017 5:34 pm

I wouldn't jump into doing surgery just yet, the cold laser therapy sounds very promising! I can recommend (well, half-heartedly since we all have different symptoms) Amitriptyline or Lyrica for painful intercourse, I take amitriptyline right now for general pain and I noticed I have stopped having painful intercourse as well (a bonus option) ..I take 50 mg right now...ah, it also helped me achieve some remission from painful intercourse for about a year in the past
I wish someone had an idea why we get these problems, I read a theory on central sensitization, but it's just a theory and not a diagnosis
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Re: Anyone else try Cold Laser therapy/ Low Level Laser Therapy for their vestibulodynia?

Post  Tired89 on Wed Jul 05, 2017 5:54 pm

Hi Mary Jane. Thank you for your reply and suggestion. I'm always glad to see when someone has tried SOMETHING for this issue and has had success with relieving their pain. I've heard of amitriptyline many times now on the forum, but my doctor never suggested any meds to me besides the creams. I've heard between amitriptyline and nortriptyline, one is better? What side effects do you experience on it and do you have to take it for life? How long were you on it until you started seeing a decrease in your pain with penetration? I'm also curious about the drug Cymbalta. I've been reading up on it and apparently some have success with it for their pain as well as any depression this awful condition can cause. Have you heard of it or ever tried it? So far, I've tried vaginal estrogen (Vagifem, which made me gain boat loads of weight, lose my hair, and get horrid acne everywhere), hydrocortisone suppositories at another doctor's suggestion, clindamycin cream and birth control. I no longer see the doctors who suggested these "remedies," especially because not only did they not work, they made me feel terrible. I saw a pelvic surgeon who told me what this is and he gave me the script to do physical therapy. I only recently began considering surgery because I didn't want to have to be on meds for the rest of my life to control this problem. I'm not sure about the life long side effects and things like that.
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Re: Anyone else try Cold Laser therapy/ Low Level Laser Therapy for their vestibulodynia?

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