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» Vestibulectomy
Yesterday at 12:39 pm by Hopeitworks

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» Recently Diagnosed.... Help!
Tue Aug 15, 2017 2:57 pm by amyhp

» Discomfort from my own liquids
Sun Aug 13, 2017 4:27 am by Hopeitworks

» Anyone else have burning on the front of thighs?
Sun Aug 13, 2017 2:20 am by Hopeitworks

» Partial Vestibulectomy
Sun Aug 13, 2017 1:38 am by infinitelywondering

» Anyone being treated by Drexel University???
Sat Aug 12, 2017 8:50 pm by Hopeitworks

» Post Vestibulectomy Pain !!!
Sat Aug 12, 2017 8:00 pm by sj17

» Pain management - what works for me
Sat Aug 12, 2017 9:58 am by sj17

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 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

Newbie to the site

Sun Jul 30, 2017 12:16 am by Ksa

Hello. Thank you for this wonderful site. I'm currently under the care of a dr in Phoenix that specializes in vaginal disorders. I will probably be on a suppository of estridol the rest of my life and I am currently on medications for a rare form of vaginitis that's pretty unheard of for my age. My vagina literally hates me. I've struggled with vulvadynia for 20 years, the duration of my …

Comments: 1

New to the site and just had a vestibulectomy

Fri Aug 04, 2017 12:19 am by Hopeitworks

Hello Everyone,

I have been suffering from vulvodynia for years! So I decided to go ahead and have vestibulectomy on July 28, 2017. I really wished I would of found this site before I went through with the surgery. Maybe I would have been more prepared to deal with recovering. I just need someone to talk and I dont mind hearing your story.

Comments: 2

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: 0

can anyone recommend a good dermatologist in LA?

Thu Jul 27, 2017 4:17 pm by saffron

Hi, I am wondering if anyone knows a vulvar dermatologist in Los Angeles? My problems seem to be external, but I'm having trouble finding a knowledgable doctor. My current dermatologist is pretty cosmetic based and I'm afraid all the products he prescribed actually made my situation so much worse!

I know there a few drs in Orange County/San Diego, but was hoping to stay local as even …

Comments: 3

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: 0


The Shadow in our Marriage

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The Shadow in our Marriage

Post  Finch on Mon May 20, 2013 9:39 am

Hello ladies,

Here is my story:

My husband and I have been married now for nearly two years. I was a virgin until our wedding night and for the first month of our marriage, we had some wonderful sex. However, I then got what they call 'Honeymoon Cystitis', which is a urinary tract infection often caused by more sex than your body is used to. So I was put on antibiotics, which cleared it up. Then, of course, I got thrush because of the antibiotics, so there was further discomfort down there. Got that treated and tried sex (as we had a few times as I was healing) but it was too painful. My theory was that I just wasn't used to it again, and that it was a similar pain to that of our first time. So over the next few months, we kept trying, but it kept hurting.

I went back to the doctors several times, seeing 2 different doctors from the practice. One of them suggested it was caused by vaginal dryness and prescribed me 'Sylk' natural lubricant (very good - I still use this, but rather expensive). While it did help, sex was still painful. The other doctor tested me for another UTI and found nothing, tested me for Chlamydia even, but found nothing. He then tried me on Thrush treatment again, but that didn't help either. So he admitted that he was baffled and rerred me to a gynecologist, after 8 months of painful sex.

I explained everything, and he examined me (ouch). After one or two prods and subsequent yelps, he nodded and said he had finished. Instantly, he diagnosed me with Provoked Vulvodynia. The way he explained it to me was that essentially, the nerve endings of my vulva send the wrong signals to my brain, interpreting any kind of pressure as pain. It is incurable and only vaguely treatable.
The Gynaeocologist suggested that I looked on the internet for treatment ideas, people’s successes and failures and ideas of how to live with it.

I have been lurking here for a long time now, gathering information and ideas. However I feel that I may have been putting this thing off, hoping it might just go away. Of course, that is not how it works.

My sex drive has been very low because of the pain, and I have sensed a lot of frustration from my husband. We have become very open, talking through everything, what works, what doesn't. I am lucky because I am happily married to a very understanding and patient man who is willing to explore this and take time to find out what works.

At the moment, it varies a lot. I have been using coconut oil in all my cooking, as this has been suggested to help, I have been taking ibuprofen before engaging in sex and using Sylk as a lubricant. I have also been washing using Femfresh to prevent harsh chemicals causing imbalance.

So really just plodding along, looking for anything that might help. It has been really getting to me recently, and I think I need to get more proactive with beating this thing.

Thanks for reading,

Finch

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Re: The Shadow in our Marriage

Post  Alana3 on Mon May 20, 2013 12:33 pm

I had provoked.v and was cured by surgery... So that's not true about not being cured. Find a vulvodynia specialist and go from there Smile

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Re: The Shadow in our Marriage

Post  Sarah001 on Mon May 20, 2013 8:42 pm

It's also worth getting your pelvic floor/pelvic alignment looked at, when we get UTIs it makde the pelvic floor spasm with all that painful peeing so it may still be doing just that. Dilators may also help to get the muscles used to having something penetrate them and if used for a few months should soften the muscles up and relax them but it's still worth a visit to a Women's Health Physio to get the muscles evaluated.
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Re: The Shadow in our Marriage

Post  Finch on Tue May 21, 2013 8:25 am

Hi, thanks for replying Smile
I'm thinking of going back to the gynecologist to see if he can refer me to a specialist, unless I can track one down who is relatively local.

I have been reading several of the posts about pelvic floors and pelvic alignment, also the relationship between lower back pain and vvd, as I get frequent lower back pain, have done since I was quite young. There are a couple of local chiropractors I am going to check out, though I will speak to my doctor first.
I've seen so many people saying dialators really help, though it seems really daunting to me. However, that is another thing I can't miss out, so will have a go. Where is the best place to get them from?

Also, where do I begin looking for a Women's Health Physio?

Thanks,

Finch

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Re: The Shadow in our Marriage

Post  Sarah001 on Tue May 21, 2013 5:35 pm

I'm not sure where you're from, if you're in the UK you can ring your local hospitals (almost all of them have a WH physio nowadays) and find out if they have one then ask your GP to refer you. If you're elsewhere then I have no idea! The dilators I have are a basic set of 4 pink plastic ones I bought online, I just googled them and then went for the cheapest. You have the right attitude that you need to do all these bits, the more proactive you are the better the chances of recovery.

If you have low back pain I would strongly suspect a pelvic alignment issue so the chiro is a good idea to assess that but the WH physios are so much more knowledgeable. I know dilators sound a bit scary but you can do them at your own pace and gradually work up to the larger ones plus you can use them to push into the muscles for a bit of a stretch too which is really helpful. Good luck and hold on to that attitude! Let us know how you get on.
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Re: The Shadow in our Marriage

Post  Finch on Wed May 29, 2013 11:39 am

I am from the UK, so I will have a look around for Women's Health Physio and definitely ask my new doctor about them.

I went to see my doctor after about a year (the one that worked with me to get to the point of diagnosis) and he has left, which upset me a lot. I grew to trust him, and he was so patient, understanding and willing to admit when he didn't know, but never left me unsure or with nothing. His replacement is none of these things, saw me and thought I was some teenager sleeping around and fobbed me off to the sexual health clinic with a smirk. I have moved to a closer doctor now.

To be fair though, I may go to the SHC to see if they have any specialists, or could help me find the right services.

Thanks for all your help, you are very kind. Smile I am going to buy some dilators and give it a try.

I will keep updating Smile

Finch

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Re: The Shadow in our Marriage

Post  Sarah001 on Wed May 29, 2013 1:14 pm

I totally understand about the doctor, a female doctor I used to see about my connective tissue disorder left out of the blue and she was the only one with any knowledge of it so I was gutted by that a few months ago. It was a good idea to move to a different doctor if the replacement was awful, I hope you get some answers and don't be afraid to ring the hospitals in your area and talk to the physio departments, I found my physio by doing just that and the receptionist got her to ring me back so I could have a chat with her and see if she knew what to do with me then it was simply a case of getting my GP to refer me so don't worry about giving them a call. If you try dilators on your own take it slow and use plenty of lube to avoid pain. Wink
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Re: The Shadow in our Marriage

Post  Finch on Wed Jun 05, 2013 10:08 pm

Thanks for your reassuring words. Smile

My Amazon order of 'When Sex Hurts' arrived today, and I have read a few pages. It seems really promising, and I know a lot of people on this forum have recommended it, so I am looking forward to learning a thing or two.

Finally have my doctor appointment booked in for Friday, so I will let you know how it goes.
I have come off my Depo (contraceptive) injection, to see if this has any impact. The pain started shortly after I switched to it, so it is an avenue of connection I thought it couldn't hurt to explore. Apparently it could take up to 8 months to get completely out of my system. I am nothing if not patient.

I have also noticed a lot of people talking of links between diet and pain levels. I have been getting really bad indigestion since I was quite young, and I had stomach cramps the other day after a meal, so I am wondering if I suffer from and allergy or intolerance, possibly to lactose. This has also been suggested as a factor in vvd pain, I think? So I will mention this to the dr too.

Anyway will let you know.

Finch

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Referral

Post  Finch on Sun Jul 28, 2013 2:31 pm

Hi everyone, thought I would check in.

I went to my appointment with my new doctor to talk through my PVD and she referred me to the pain management specialists at a local hospital.

I am pleased to have the referral, a little daunted by more examinations, and more people I have to talk to about it all, but I have high hopes that I'm definitely on the right track.

They are general pain management specialists, but I hope they have some ideas and some knowledge of the condition.

Wish me luck!

Finch

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Re: The Shadow in our Marriage

Post  Elc88 on Thu Aug 01, 2013 8:52 pm

When I was first diagnosed, they diagnosed provoked vulvodynia as well. I was told not to use any feminine products like FemFresh, so I'd recommend you get rid! You are washing away any good bacteria that help to protect you down there. Just use plain water, or an emulsifying ointment mixture (go to your local pharmacist and ask, they usually store it behind the counter), which is to act as a bit of a moisturiser (don't use normal moisturisers!)

I'm in the UK too and think there is such a wide difference between the doctors you see, and it's very frustratingly slow on the NHS sometimes! I was originally seen by a specialist in Scotland, and when I moved to England they refused to send my notes on (!) so I had to go through all the tests again. Sexual health clinic can help, but in my experience, they're an in-out lot, and not a long term solution (unless you do test positive for something).

Very interested to read what you say about allergies to food being a possible cause - I am allergic to milk proteins, and can't drink raw milk, though don't have a problem with lactose. I eat cheeses no problem, but get bloated if I eat yogurt for more than a few days in a row. It might be another solution to consider for me!

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Re: The Shadow in our Marriage

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