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New and need advice and help

Wed Dec 05, 2018 3:26 pm by Cin124

Hi everyone,

About three months ago, I started having vaginal and vulval itching. Then, about two months ago, my vulva started to feel painful and look swollen, so I went to the doctor. I was tested for herpes, chlamydia, and gonorrhea which all came back negative. I also had to do a vaginal swab test and the only thing that came back positive was yeast infection. I was prescribed hydrozole …

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I'm new to this forum and would love some advice! :)

Tue Jun 05, 2018 4:13 am by anikita

Hi lovely gals!

I'm honestly hoping to get any bit of advice anyone might have to offer. I go from bouts of sobbing hysterically in my boyfriend's arms to feeling confident that I can beat this.

I haven't been actually diagnosed with vulvodynia but EVERYTHING under the sun has come back negative. I started having sex 4 years ago after starting Lo Loestrin, with my first and current boyfriend …

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Hello. Happy to have found this group.

Fri Dec 07, 2018 9:01 pm by foxysugarpants

I am new here and hope to gain some insight into my vulva pain. I suffered for a long time not realizing that there are ways to feel better. I saw the Dr. yesterday and I am starting P/T pelvic and valium suppositories. queen

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Had this for 5 years, looking for people who understand

Sat Oct 06, 2018 9:46 pm by blackberrie

Hey all. I'm really struggling to find anyone in real life who can really understand what I'm going through. I've had vestibulodynia for 5 years now and I'm single. Obviously it has completely affected how I approach dating and sex and the fact that I can't really talk to people irl about it has made me feel very lonely. I've found that a lot of the women who have this problem are married and …

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Anyone have pain with urination?

Tue Oct 16, 2018 2:35 pm by mertzwl

Hi everyone - I can't believe I've been dealing with this for almost 10 years and an appointment scheduler at a urogyn office is the one to suggest I look into vulvodynia. Honestly, I don't care, I just thankful I might have an answer.

I have pain in one specific spot right around the urethral opening so it always coincides with urinating (it's not a uti). Does anyone else deal with pain …

Comments: 6

Diagnosed recently, looking for advice

Sun Sep 02, 2018 12:51 am by Cloudberry

Hi everyone,

I'm so glad I found this forum! I was diagnosed with vulvodynia/vulvar vestibulitis (still not sure about the difference between all the different terms) a couple of months ago and I could do with some advice. This is probably going to be a lot of text because I just want to get everything off my chest, so please bear with me.

I’m a woman in my late 20s. Before getting diagnosed …

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From a concerned husband

Thu Jul 12, 2018 10:45 pm by ConcernedYorkieHubby

Hello everyone,

This is probably a little unconventional, but I’m a man who is here because his wife has been diagnosed with vulvodynia. The poor girl has been suffering with vulva pain for around 10 years now, and I’ve been by her side through the pain and tears and doctors misunderstandings the whole way, and we’re both exhausted and terrified by the whole experience.

I’m sure a lot …

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6 year sufferer but I’ve found some hope

Wed Oct 10, 2018 1:33 am by Npage14

Hey, ladies! I’m new to this support group, I’ve thought about doing something like this for a while so I wanted to try this out! I’ve had vulvodynia for 6 years now, I am self diagnosed. I’m 20 now and the pain started when I had my first encounter with sexual contact when I was 14(I still remained a virgin though it was fingering). For a couple years the pain was so bad I could hardly …

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Hurting, Burning, Itching, and Worn Out

Thu Aug 09, 2018 10:55 pm by donnambr

This vulvodynia that I'm currently suffering with is so cruel. I hurt, I burn, I itch. When I first got this several years ago, before the internet, I though I was the only one with this awful disorder. Doctors couldn't figure it out. I felt so alone and devastated. Somehow it disappeared for a few years and now I'm suffering again. This dreaded V misery is back and I feel like I will be with …

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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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