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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, …

Comments: 7

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 …

Comments: 5

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 …

Comments: 4

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


Advice for a friend

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Advice for a friend

Post  Elc88 on Sun Dec 08, 2013 9:14 pm

I thought this might be a good place to ask, to try and draw from a wide pool of knowledge and experience. I feel like I've spent so much of the last 4 years researching problems in that part of the body, that I am sad I can't think to suggest anything to a friend who is also suffering from problems in one of our favourite areas!

My friend suffers from recurring UTI's every time she has intercourse, apparently every single time. Various tests show nothing, and several doctors say there is nothing that can be done. She seems to have accepted their diagnosis, as it's come from several different doctors.

My personal experience with doctors is that they often lack understanding about that part of the body, and I'm not entirely convinced they don't just think it doesn't matter because it's not a part of the body others can see, it's not killing us and it's not like it's stopping us from living our lives...

Anyway, I just wanted to ask. As I say, she gets a UTI every time, I don't know what tests she's had, but I'm scratching my head to think what might cause a UTI. Are there any others who've experienced this?

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Re: Advice for a friend

Post  alessandria on Sun Dec 08, 2013 9:53 pm

If nothing has shown up positive on a urine culture, she should probably try to get a referral to a urogynecologist. UTIs tend to make themselves known in a few different ways, such that it'd be pretty hard to get a false negative. To me, I'd be concerned that this is interstitial cystitis rather than UTIs. IC can feel exactly like a UTI, and flares can definitely be provoked by sex (it isn't a condition I have, but I've read a lot about it and there are a few sufferers on this forum). Has she been worked up for IC yet? Best of luck to your friend!

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Re: Advice for a friend

Post  Alana3 on Mon Dec 09, 2013 12:56 am

It's called honeymoon cystitis and can be prevented by taking a low dose antibiotic before sex . Also she may wanna look into IC... tell her to go to a urologist

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Re: Advice for a friend

Post  Leslieg on Mon Dec 09, 2013 3:14 am

My sister has this issue. It started when she started to date her current boyfriend.  She had a workup  done and nothing showed up.  Like Alana said, her doctor gave her a low dose antibiotic and she takes a pill each time she has intercourse.  She's been with him a while now and she thinks her body has adjusted to him and hopes to be able to stop taking them. Is your friend drinking lots of water and peeing right after sex?

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Re: Advice for a friend

Post  Alana3 on Mon Dec 09, 2013 2:13 pm

And you should always pee after sex

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Re: Advice for a friend

Post  Elc88 on Mon Dec 09, 2013 9:12 pm

Thanks for the suggestions guys - I'm afraid I don't know any more than I've said, I'd just like to be able to suggest something to her the next time I see her. I know how frustrating these problems are, and if there's anything I can suggest to stop someone else I know from having to put up with it, I want to investigate it.

I did wonder about cycstitis, but couldn't remember its name to ask if she'd been checked. She said she takes some over the counter antibiotic/product soon after, but sometimes doesn't get it in time, so it sounds like taking a pill before will help her. I will definitely suggest that one!

Thanks again!

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Re: Advice for a friend

Post  aspaceodyssey on Mon Dec 09, 2013 9:24 pm

I had this problem when I was regularly having sex. for me, drinking carbonated beverages (particularly soda) in the same time frame as sex would cause a UTI, so once I was careful about cutting back on soda the problem improved greatly. d-mannose powder is a good natural remedy and preventative for them, but that's assuming she's getting an actual infection. if it's something like interstitial cystitis I don't know if it would still help...hopefully she can find a way to avoid taking antibiotics constantly, because that really does a number on you.  Neutral 

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