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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 - did your problems start with a UTI

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New member - did your problems start with a UTI

Post  Niknak on Fri Nov 20, 2015 4:21 pm

Well at last I think I may have an answer to my problems! Things started 5 months ago when I got what I thought was cystitis - quick call to the doc and I got prescribed antibiotics, the burning urine feeling went but I was left with a constant soreness - I was prescribed more antibiotics, then 2 lots of thrush treatment (even though I had no symptoms of thrush) steroid cream then more antibiotics for BV (even though no signs of BV). I finally had enough so luckily through work I have private health care so I got referred to a urologist/gynecologist - he put me on 3 month course of antibiotics to stop bladder infections and had a look in my uretha/bladder with a camera, he said everything looked fine but after performing a swab/smear he said I was very dry so it could be down to a lack of estrogen (I had recently come off the combined pill and went on the mini pill - all these problems started after I started the mini pill). So I am still on the antibiotics (not really sure why as I don't think it's cystitis related) and I'm now back on the combined pill and on estrogen cream - i don't think it's working, I'm constantly crying with frustration as I don't know for sure why this pain/soreness is happening - after breaking down in tears numerous times in the docs I just keep being told it could take months for my hormones to get back to normal. I thought I was mad but having just found this forum today I think it may be vulvodynia...so I'm next seeing the consultant in 3 weeks where I'll mention vulvodynia. What is the normal first go to treatment for vulvodynia? Does anyone else have a similar story to mine with contraceptive? Did your hormones balancing out help? Thank you for any help you can offer xxxx

Niknak

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Re: New member - did your problems start with a UTI

Post  PainBlogger on Fri Nov 20, 2015 5:12 pm

My problems started when I got a UTI and thrush at the same time last year. I'd never had thrush before and wasn't particularly prone to UTIs. I wasn't on any type of contraceptive pill. I had antibiotics and antifungals (cream, pessaries and tablets) and the infections went but I was left with pain, particularly after emptying my bladder but also on the surface of my skin and internally.

Normal first go to treatment - I think it very much depends on the doctor. I was given lidocaine gel (local anaesthetic) to use for six weeks at night on a cotton wool pad. When that didn't break the pain cycle I was given cimetidine (which is an interstitial cystitis treatment) to try. I was already on amitriptyline for nerve pain elsewhere in my body, but the doctor suggested I try increasing the dose of amitriptyline. I think amitriptyline is possibly the most popular first line oral treatment for nerve pain as it is so cheap and has been used for decades. If you end up seeing a pain management specialist they may be more likely to suggest drugs such as pregabalin or gabapentin for nerve pain. I'm not sure that a gynaecologist/urologist would have so much experience at prescribing those. My gynaecologist basically told me there was nothing visible and discharged me from her clinic, which is how I ended up under the care of a pain management specialist who has more experience of dealing with chronic pelvic pain issues.

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Re: New member - did your problems start with a UTI

Post  Niknak on Fri Nov 20, 2015 5:27 pm

Thank you for responding...that's really helpful, I was prescribed lidocaine gel after begging for something but was told to only used it twice a week so gave up on it, it's been prescribed in small syringe type applicators that I put onto cotton wool pads and wipe into the entrance of my vagina...I've only been prescribed 14 doses but now I might try this nightly to break the cycle? So it's safe to use every night?

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Re: New member - did your problems start with a UTI

Post  PainBlogger on Fri Nov 20, 2015 9:53 pm

It is safe to use nightly, but it's best to check with your doctor before altering the dose of anything. Presumably you'll need to get another prescription for more applicators? I don't think nightly for fourteen days would be long enough to break the pain cycle. It's usually 6 to 8 weeks. I had the 11ml size syringe applicators (Instillagel) and was able to get two days use per syringe. It's ever such runny stuff, not the easiest thing to apply...

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Re: New member - did your problems start with a UTI

Post  sgw11 on Sat Nov 21, 2015 12:16 am

Yep I am the same. Mine started with what felt like a UTI. I kept going to the doctor and getting urine tests done. No bacteria ever cultured but they prescribed me antibiotics anyway. Sometimes the feeling would go away, but it always came back. I was eventually put on macrodantin by my GP which is a preventative antibiotic for UTIs (mind you they still had only grown culture once). I was also treated for thrush and swabs were taken, but nothing would come up. The feelings kept coming and I finally decided to go to a gynaecologist. That's when I was diagnosed with vulvodynia.

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Re: New member - did your problems start with a UTI

Post  sgw11 on Sun Dec 20, 2015 7:05 am

Just a quick question, were you guys having sex when the symptoms started? Or was there no event that triggered it? I'm just curious because mine started when I was having sex, however I have previously had pain-free sex before all this happened.

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Re: New member - did your problems start with a UTI

Post  PainBlogger on Sun Dec 20, 2015 9:06 am

It had been a few days if I recall correctly. Then I got the thrush symptoms first (which I'd never had before ever) and the UTI symptoms (which I'd only had very rarely in the past and not in relation to sex necessarily) a couple of days after those. I also had previously pain-free sex.

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Re: New member - did your problems start with a UTI

Post  sgw11 on Sun Dec 20, 2015 9:11 am

That's interesting. I had had a few UTI symptoms in the past but nothing major either. But same thing, it felt like a UTI but kind of itchy as well, but with no discharge to indicate it was thrush. Yet over and over again I was prescribed antibiotics (when no bacteria was ever cultured except once) or I was told to go buy fluconazole, yet the swabs also never picked up anything. Thanks for replying.


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Re: New member - did your problems start with a UTI

Post  tinkerbelle2 on Mon Feb 01, 2016 8:54 pm

Hi Niknak! Welcome to the forum, but sorry as well that you're here... No I think mine started with a UTI too, but around a similar time I also had thrush and was on the pill! And I was on antibiotics for the UTI. So it could've been any of the above that disrupted things. Mine has a lot of similarities with yours by the sounds of it!
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Re: New member - did your problems start with a UTI

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