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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


New member, feeling very down

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Re: New member, feeling very down

Post  jules on Sun Jul 31, 2011 2:49 pm

Vicki...wow, you have lots going on. i hope you can find time for you. it is very hard to work w/ V and your other health issues. What's up w/ the burning in your hands etc. how about a chiropractor. that's helped me in the past w/ numbness in my hands. i haven't had that problem in years. it wasn't burning, just tingling. i know it was related to my back issues. as for the feeling of hair pulling, i have never felt that. however, i have seen on the V facebook page that many women have. hope your health improves soon. miss chatting!

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Re: New member, feeling very down

Post  JustWantHelp on Fri Aug 05, 2011 9:12 pm

Hi ladies! I am new here and I have been suffering for almost 2 years from intense burning!! It all started after a really bad yeast infection. I have seen 17 doctors including dermatologists and they cants find what it is, nobody wants to help me and the one doctor that acts like he cares tells me it isn't vulvodynia when I think it is. Well anyways I hope you don't mind me asking a question or two Very Happy Other than certain foods and coffee, are there any other things that cause your pain to get worse? For me I have noticed around my period usually is bad, some months more than others and after my shower is really bad..I have to immediately put something on like Vaseline or steroid cream(doctor said he thought I might have lichen sclerosis so I use the steroid cream even though it seems to make it worse)..If I don't use anything after I shower my skin if on fire, it stings and feels like pins are poking me and my skin feels really tight. Any input would be great and very much appreciated! Thanks flower

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Re: New member, feeling very down

Post  Sarah001 on Sat Aug 06, 2011 4:36 pm

Hi Justwanthelp and welcome. Personally I don't find any food or drink makes my symptoms worse and alcohol improves them which I think is down to its muscle relaxant ability. I usually feel a bit better at the start of my period but any friction from clothes, sitting, any type of touching in the area makes things alot worse. I think you should maybe knock the steroid cream on the head, not only does it thin the skin but if you had lichen sclerosus a dermatologist would have picked up on this as it's very easy to spot when its there, my GP told me I had lichen planus and gave me a really strong steroid ointment but I didn't have it at all and the ointment took a layer of skin off and made things alot worse so I wouldn't use that if I were you. Generally we get given steroid ointments/creams to see if its an allergy or skin condition and if they don't work after 7-10 days they should be scrapped.

If your showers make things alot worse is it shampoo/conditioner/shower gel getting on the area that's the problem? Have you tried rinsing the vulva after you're done with all chemicals to see if that works? I too have to apply vaseline or zinc and castor oil cream every day several times a day to stop one side of skin rubbing on the other and without it I get loads worse so you're not on your own there. We're all different though and I can happily lay in a bath with bubble bath in it and feel no ill effects from that, coffee and acidic foods make no difference whatsoever to my symptoms and as my pelvic floor is the suspected culprit the relaxation I get from alcohol takes alot of the pain off but other ladies on here are different and couldn't do those things so it's trial and error really and not one solution fits all.
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Re: New member, feeling very down

Post  JustWantHelp on Sat Aug 06, 2011 8:13 pm

Thank you so much for your reply. I have found it hard to believe that it is a skin problem like lichen sclerosis because other than it being a little red sometimes, there's no change. I have considered that maybe it was my shampoo or soap and have since started using sensitive skin dove soap for my body and baby shampoo (perfume free) for my hair and I rinse off very well. I have changed so many things in my life so far and nothing seems to help. Maybe I should stop seeing this doctor, he has been giving me steroid creams the whole time...I haven't used them the whole time though because they just don't do anything for me. The only reason I keep going to him is because nobody else will listen to me. I am sick of being told I have a yeast infection when I don't or herpes when I have been tested several times and its negative and if it was herpes this would be the weirdest case I have ever heard of!
You mentioned about the pelvic floor...Do you get any pain anywhere else or feel spasms? I am just wondering because I thought maybe that was my problem but I didn't know if there were any signs to look for. I do have lower back pain and I am pretty sure I may have IBS, I sometimes get what feels like spasms in my anus (sorry, cant think of a nicer word) and my lower abdomen often feels very heavy. I have NO clue if any of that has to do with one or the other..Its nice that someone knows the pain I feel and that its not just all in my head. Thanks again!!

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Re: New member, feeling very down

Post  Sarah001 on Sun Aug 07, 2011 10:58 am

I think you should definitely get your pelvic floor checked, you need to see a womens health physio for that, low back pain and spasms around the anus could easily be pelvic floor related. I actually have full body pain because I have a condition where my ligaments are faulty and don't stabilise my joints properly so all my muscles are overworked, in spasm and full of trigger points all the time, plus I have fibromyalgia too, and my pelvic joints are badly affected so my pelvic floor is incredibly tense. You can rule out all infections at a GUM clinic to make sure you don't have anything else and a dermotologist would definitely have noticed lichen sclerosus so you can rule that out. Herpes causes flare ups with normal periods in between so unless you have lots of periods of time where you have no pain it's very unlikely to be herpes but you can have a swab of the area done when there's redness to be sure but I really doubt that's your problem. Definitely get your pelvic floor tested as your next step and do let us know how you get on.

With regards the shower you could always wash the vulva with plain water before your shower and apply vaseline to keep the water off the area beforehand and see if that helps. Keep us posted.
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Re: New member, feeling very down

Post  JustWantHelp on Sun Aug 07, 2011 2:57 pm

Thank you so much! I will be making an appointment tomorrow to see what we can find out. I will for sure try the shower idea, thanks! As far as the lichen sclerosis and herpes goes I don't think it is anything like that either. I don't have long periods of time were it gets better in fact since it started almost 2 years ago I don't remember it really going away and coming back but I do know that there are times where it feels worse than other times. I had a punch biopsy done when all this started and it showed some signs of herpes but nothing else which is why this doctor is so hell bent on it being herpes. I have had a swap test, a scraping and a blood test for herpes and they have all been negative so I think it is safe to say that I don't have it.
I think it is just time for a new doctor, it just sucks because I have seen 17 already!! I will keep you posted and again thank you!

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Re: New member, feeling very down

Post  kateelizabeth on Tue Aug 09, 2011 6:59 pm

Libby I am so sorry to here about what you are going through at the moment.
I have (sorry to be graphic) small white blisters/erosions/ulcers on the entrance of my vagina, which led my gp to diagnose me with herpes, however after having tests done I have found out that I do not have the herpes virus. I have been diagnosed with vulvodynia, yet these 'blisters' make me question that it is either something else, or a combination of the two, yet after researching extensively on the internet I can't find out what it could possibly be. It would be great if we could keep each other informed!

I am only 21 and studying, and missing out on the student lifestyle is horrible and its not something you can just tell people which makes it hard for friends to understand.
Where are you in the UK?

I want you to know you are not alone and to tell you not to lose hope in getting better.
As for tips, I have found that using vagisil helps give temporary relief.

I wish you well x x x

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Re: New member, feeling very down

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