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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 …

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 …

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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


Cystitis/UTI

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Cystitis/UTI

Post  Sunflower82 on Sat Sep 01, 2012 8:22 am

Hi,
I have been diagnosed with vulvodynia, I am currently taking antidepressants and have been seeing a women's health physio over the last year, and have also seen a chiroprator. The problem is I get cystitis or UTI everytime we try to have sex, due to the pain this doesn't happen very often twice a month, and really doesn't last that long before we have to stop. I follow all the rules wash and wee before and wash and wee after. I've tried water d mannose powder but it hasn't work for me. Doctors are useless as their answer is long term antibotics, or to take one antibotic after sex which I really don't want to do! Just wondering if anyone else can offer advice.


Many thanks

Kt

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Re: Cystitis/UTI

Post  Sarah001 on Sat Sep 01, 2012 12:38 pm

I'm not sexually active right now but I have started getting repeated UTIs, it's got to the stage where I get one every other month at least and the last one went to my kidneys and made me really, really ill so I asked my Women's Health Physio about this and she explained if your pelvic floor is tight (mine is horrendous) it inhibits the detrusor muscle which should contract to empty the bladder at the same time the pelvic floor relaxes to allow this to happen. If your pelvic floor can't relax fully clearly your bladder isn't going to empty properly and the urine left in there is in her words "like stagnant pond water and a breeding ground for infections to take hold" so she recommends women with tight PF muscles and UTIs do double voiding which is basically exactly what it sounds like and go once until your brain thinks your bladder is empty followed by waiting a couple of minutes either in place or move around a bit then try again to see if there's more in there. Do this every time you pee to make sure nothing gets left behind to help infections take hold and especially after sex. I do the double voiding (and triple voiding if I can still feel some urine in there) and I always have some left after my brain is convinced I have an empty bladder. My PF is brutal and feels like wood because of another health condition so my physio is looking into trying to get me a device that vibrates and you hold it over the bladder every so often to stimulate the bladder to empty, patients with MS sometimes use them for this reason so if she does manage to acquire one for me I'll update with results but definitely try the double voiding routine to see if it helps.
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UTI's

Post  Rainy Day on Sat Sep 01, 2012 6:17 pm

I used to get UTI's every time I had sex too. I finally stopped them by drinking at least 16 oz of water immediately afterwards. And, I never have sex before going to bed. Unfortunately, I got lazy on this in Feb, and that's when I got a UTI again (and the dreaded V).

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Cystitis/UTI

Post  Sunflower82 on Sun Sep 02, 2012 12:38 pm

Hi,

Thanks for both responses, all ready doing both of these, yeah I also have problems with not always being able to empty my bladder something physio has helped me with, but still stuck with infections, generally 24 hours after sex I will have cystitis, or recently within half an hour the frequency goes up, need to go every15-20 mins. Doesn't burn as much during sex or after sex used to burn for hours anywhere between 3-6 hours. During sex I get a slightly burning sensation and a stretching sensation. Then we have to give up. Still working on the dilators, problem is once I have an infection even doing the dilators are out of the question, I told my doctor this and she responded well u shouldn't have to stop using the dialators because you have an infection!! At which point I wanted to shout at her!
I find if I use the dialators regularly this helps when it comes to trying sex, however I find I need to do it everyday and then having infection I seem to go back to square one, so frustrating, but I am sure everyone can see where I'm coming from.

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Re: Cystitis/UTI

Post  Sarah001 on Sun Sep 02, 2012 1:47 pm

I have the same issue, if I don't clench for a while then get a UTI I clench like crazy because of the irritation and no you shouldn't use dilators with an infection present stupid doctor! Evil or Very Mad It may be that you're still retaining urine without knowing it, an ultrasound can tell you this and you have one with a full bladder then pee and have a repeat one to see what's still in there, apparently 100ml is normal but over that isn't according to my physio. I'll be having one soon if my frequent UTIs continue. Do you use lube? Anything oil based can allow bacteria to cling to it and help it into the urethra so if you use oil based probably shouldn't however water based ones can do it with me too so it's not foolproof.
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Cystitis/UTI

Post  Sunflower82 on Sun Sep 02, 2012 9:03 pm

Hi,
Thanks for the message about lube, never knew that used to use oil based but generally now used water based.

Thanks kt

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Re: Cystitis/UTI

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