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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 …

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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 …

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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 …

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Not vulvodynia

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Not vulvodynia

Post  morgaan_xo on Fri Mar 13, 2015 8:30 pm

Hi Girls,

I haven't wrote anything or been on here in ages but I just wanted to post my outcome to give you girls a little hope! You girls know your own body, so always push the doctors if you think it's something else or want more answers.

I've lived with vulcodynia like symptoms for 3 and a half years and I was convinced it was this as there was nothing else the doctors could put it down to... I would constantly say it was hormones, after being refered to so many people I was refered to a dermatologist in January and after all but 10 minutes into my appointment she said it sounds like normal thrush, but persistent thrush where you need a longer course of antibiotics, and low and behold the swabs came back as thrush and the antibiotics have worked, for 3 and a half years it has been TRHUSH this hole time, annoyed and over the moon at the same time.

Keep pushing girls and make sure you get the correct diagnosis, you know your own bodies more than anyone.

morgaan_xo

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Re: Not vulvodynia

Post  Mariek on Sat Mar 14, 2015 11:51 am

So happy for you. My doctor did that test already. Wasn't that!

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Re: Not vulvodynia

Post  sailor_moon on Wed Mar 18, 2015 1:54 am

Omg I am so happy for you! Is the treatment they gave you working? I thought they had previously swabbed you for thrush and nothing showed? Hope you are fully cured! Smile
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Re: Not vulvodynia

Post  morgaan_xo on Wed Mar 18, 2015 6:18 am

Yea all working, I'm on a three month course of antibiotics and ive been great, touch wood!!! And I think because it's not there all the time, it probably wouldn't show up, but the last swab they did, it came back that I had it, and ive been fine, so fingers crossed this is the right answer

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Re: Not vulvodynia

Post  sailor_moon on Mon Apr 06, 2015 11:01 am

Not sure if you still check this site but I would just like to know the medication that you were given to treat the thrush? I took fluconazole for 6 weeks but it didn't work.. none of my tests come back positive but it literally feels like my discharge is burning my skin!
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Re: Not vulvodynia

Post  morgaan_xo on Mon Apr 06, 2015 11:11 am

That's what they gave me too, but I had 3 months worth, I'm still taking them now, got a few weeks left, maybe you need a longer course?

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Re: Not vulvodynia

Post  sailor_moon on Mon Apr 06, 2015 11:21 am

Did it work for you ? They said after 6 weeks I should have improved but I didn't. How long did it take for it to work for you? I hope it did work for you....nothing worse than false hope!
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Re: Not vulvodynia

Post  morgaan_xo on Mon Apr 06, 2015 12:50 pm

Yea I don't have pain constantly anymore, I get a little bit of pain just before my period, but nothing major compared to what it used to be! And it took a couple of weeks for it to subside

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Re: Not vulvodynia

Post  A2015 on Sat May 23, 2015 2:13 pm

Hi morgaan_xo,

I'm new to this forum and have read your recent success. I hope you are still cured. Could I ask a bit more about your story?

I read in your posts that your pain was on the skin surrounding the opening (as mine is). Was it always sore? I have visible tender redness & inflammation, very sore only on contact, but it does not go away.

When you were prescribed the steroid cream which you had a bad reaction to, were you found to have Thrush at this time and treated for it?

I've been tested multiple times since my initial real Thrush infection which triggered my Vestibulitis symptoms, and it has since been negative.

I was hoping to ask whether it took until this March for you to be tested for Thrush? Therefore, was it there all along but they didn't test for it or did you get negative cultures along the way.

Big thanks,
A2015

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Re: Not vulvodynia

Post  morgaan_xo on Sat May 23, 2015 6:22 pm

Hi A2015

I've still got the all clear, and I have actually stopped the antibiotics now and still no longer in pain. I have back up antibiotics just in case I get a flare up because I've noticed mine tends to get worse when I'm more hormonal!

When I first had my pains there was never any visible pain, it was only the last year or so that I started to see redness to the skin, I always had a mellow burning pain but my skin only started to look red when I started to get more painful break outs, it stopped being a mellow pain and instead got break outs before and after my periods and would subside in between, I think this changed due to my contraceptive injection wearing off! So it wasn't always visible! Mine was also worse on contact, I struggled to have sex for nearly 3 years, but was able to when it began to subside between the break outs.

I was tested for thrush quite a few times when I had my mellow pain but always came back negative, I used to get the odd break out of thrush and was treated with te 2/3 day course of antibiotics and went back to my mellow pain, so they never thought my mellow pain was thrush! They out it down to loads of things, it was only when I was referred to a dermatologist in January because my pain changed to break outs rather than the mellow pain and there was visible soreness, they tested me for thrush and it was present even though I wasn't having a bad break out, they thought they'd try me on the 3 month course just to rule out persistabt thrush, and it worked!!!!!!

Have you doctors given you a long strong course of antibiotics for thrush? As the 2/3 day course won't work if you have persistant thrush, it'll just keep coming back!!

Hope that all makes sense!

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Re: Not vulvodynia

Post  A2015 on Sat May 23, 2015 6:36 pm

Hello,

Thanks a lot for getting back to me, it does all make sense!

I haven't tried a long course of antifungals for Thrush yet. In the past, I have had 3 dose treatments (1 pill 3 days apart) with no relief. Like you, when I did have a break out of more classic Thrush symptoms (itching/swelling), I would take a Fluconazole and it would bring me back down to the consistent soreness.

However, I am not sure my symptoms are quite like yours were Sad I've read about Cyclic Vulvovaginitis which sounds like what you had, ie sensitivity to yeast & experiencing relief during your period. Unfortunately, my pain is consistent & the skin itself feels very inflammed throughout the month.

I wonder why so many get negative tests, particularly in your case when it was clearly a Thrush issue all along?!

I am seeing a dermatologist next week, so I will ask about this and hope for the best.

Thanks again & I hope things stay healthy for you.

A2015

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Re: Not vulvodynia

Post  morgaan_xo on Sat May 23, 2015 6:52 pm

Maybe you should try the long dose? I think with mine it was consistent for 2/3 years and I would never have put it down to thrush and I don't think it was obvious either because there was no visible pain for a very long time, It was just burning all the time, it was only when I came off my contraception it changed, are you on any contraception? As I feel mine started because of the implant and injection!

It is weird how it never showed up before but I'm glad it did as it is something that I have been able to cure!

It could be something completely different for you, but if they aren't giving you any other answers or options, try the 3 month course as it won't do any harm!!

Hope things work out for you xx

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Re: Not vulvodynia

Post  A2015 on Sat May 23, 2015 7:07 pm

I have considered trying the long dose, so I may well try it.

Unfortunately, I have visible pain all the time.

Re hormonal contraception — this is where my case gets more complicated. To be as brief as possible, I suffered with these exact symptoms for the exact 1.5 years I was on the Pill (2012-13). My symptoms started with a full on Thrush & BV infection. Treated, then the pain continued. I came off the Pill and everything was completely gone. It was like a miracle. Unfortunately, despite not being on hormonal contraception since, the symptoms have come up in exactly the same way having developed a Thrush & BV infection a few months ago. It's like a nightmare repeating itself.

Sorry just to clarify, you were burning all the time until you came off your contraception—when was that & did things improve then? And then got fully better when you took the long course of antifungals?

Thank you!

A2015

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Re: Not vulvodynia

Post  morgaan_xo on Sat May 23, 2015 7:33 pm

Yours does sound similar to mine, I'll try to explain how mine happened as brief as possible, it started when I was 14 I'm now 18.

I went on the impant at the age of 14 (2011), I was fine for the first 3 months but I started to bleed all the time, this started to cause water infections and this is when the burning pain started. Along with the burning pain I couldn't wee properly, this was in 2012 that it started, I had the implant out and went on the injection to stop the bleeding and I didn't bleed at all but the burning pain felt worse and would never go, it took a year until I was finally referred to someone, I was referred to a bladder specialist in 2013 and I was diagnosed with an over active bladder and bladder pain syndrome, I'm on medication for these conditions and haven't had problems since. We thought the burning pain would go along with the bladder problems.

I was referred to gynaecologist not long after the bladder specialist as the burning pain wouldn't go, this was when it was just a consistent burning pain and no visible signs, she put it down to vulvodynia and vaginismus but I was convinced it was down to contraception, so I stopped the injection in 2013, and January 2014 was when my pain started to change from constant pain to a more severe pain and break outs (started when I my periods came back), my gynaecologist wouldn't listen as when ever she examined me I wasn't having a break out so nothing showed, so I took pictures and showed her, I was then referred to the dermatologist just before Christmas and I was given the antibiotics in January this year and they worked!

I'm still convinced mine is down to hormones!!!! I'm too scared to go on any hormonal contraception because of the problems I've had since I was 14, I think you may have developed a problem because of contraception the same as I did!

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Re: Not vulvodynia

Post  mcc on Mon May 25, 2015 7:00 pm

Hi morgaan
im new to this forum and im so happy to read about your good news.im still waitin for a diagnosis saw one dermo
already had biopsy done nothin showed only non specific inflamation.im seeing another dermo on wed so hoping she can help.ive had 2 swabs done for thrush and both came back clear.do u know if their could be a possibility i could have thrush and maybe it hasnt shown up? I had similar symptoms yrs ago from taking hormones for fertility treatment and im now in early menopause im 38 so my hormones are at an all time low now.im at my wits end from the burning.

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Re: Not vulvodynia

Post  morgaan_xo on Wed May 27, 2015 7:04 am

Hi mcc,

Have they checked I see it yours is a hormone imbalance due to the menopause? As mine now flares up when my hormones are all over the place? Menopause can cause a lot of issues down there, so it could be down to that?

I would say there is a chance of thrush as I had loads of swabs that came back negative to begin with, it was Kyle that one time I saw the dermatologist that it came back positive; so I would say there is a chance as that's what happened with me!

Hope you find some answers soon xx

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Re: Not vulvodynia

Post  sailor_moon on Fri Aug 14, 2015 10:44 am

Hey Morgaan,

Not sure if you are still active on here, but as I conversed with you quite a bit while you had symptoms.

My doctor did a recent swab test and for the first time ever I tested positive for yeast! For the first time in 2 1/2 years!! My doctor was able to swab me when I was having a severe flare up and for the first time ever I got a positive result.

He said it may be the cause of all my problems, or I may have a yeast infection that I've gotten recently on top of vulvodynia.

I would like to know how long it took for you to see results on fluconazole, the strength and how often you had to take it? Is it just fluconazole you took or did you have something else with it?
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Re: Not vulvodynia

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