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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 …

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


New here, looking for some support.

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New here, looking for some support.

Post  PhoenixFire on Fri Nov 18, 2016 1:34 am

Hi everyone. Let me start by saying that reading this forum today has made me feel so much less alone. My overall story is really long, so I'll try to keep it as short as I can. It all started when I was 16 and got my first uti. I believed I was over treated for it, and then started self treating for yeast when I thought that was my problem afterwards. Then started the cycle of vulva redness and burning pain. No doctor I saw could figure out what was wrong with me, and I tried so many things. I don't even remember cultures ever showing anything. When I was 18 or so I saw a gyno who told me to try changing my diet for a while, cutting out sugar, gluten, etc. I did this for about a year, and I can't remember if it help much, but it might have. I was also pretty depressed and isolated at this point. When I was 19 I met my current boyfriend, and at that point my vulva was actually pretty normal, I don't know if it was the diet, or just time, but I hardly had any pain. He could touch me, and we would do all sorts of foreplay just fine. After 6 months we decided to have sex (we were both virgins) and it was wonderful. I only had minimal pain at the beginning, but I think that's normal for your first time. I did end up with a uti, and yeast infection, but those cleared easily. Then those both happened again the next time we had sex. So I decided that condoms might be the culprit, and I got the implant in my arm. I had some infections occasionally while on, but I could clear them with boric acid. I do remember at one point I tried using vitamin c vaginally (I read about it online as a bv cure) and that caused awful burning that lasted for months, but eventually did pass. After three years I did get the implant removed, and was briefly put on the pill. I had a bad reaction to it, so discontinued after less than two months. So now I'm 23, and basically at my wits end. I've had vulva burning, stinging, soreness, itching, and everything bad for about 3 months now. I did have a uti around the beginning of it, but the pain started before that. I've been tested for yeast, bv, stds, you name it. Sometimes it would come back with a little yeast or some clue cells, but the treatments never helped. I also know what it feels like when I have an infection, and it's nothing like this. I haven't been able to have sex because of the pain, which is unprovoked but is almost all the time. I've been seeing a natropath, and she did test me for food allergies while came back that I'm very sensitive to dairy. I've cut out dairy for almost a month now, but vulva pain is very much still present. She may want to also test my hormones, but all these tests are getting expensive. I had normal cycles before bc, but now I only get a period every month and a half or so. I also overall don't feel that great, I'm tired most of the time, I get lower back pain that sometimes feels like a burning pain, headaches, nausea, I'm basically a mess. But I would deal with all of this if I didn't have this awful burning pain, it honestly makes me so depressed, I'm lucky that my boyfriend is supportive. Maybe I just needed to vent, but advise would be much appreciated.

PhoenixFire

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Re: New here, looking for some support.

Post  PhoenixFire on Fri Nov 18, 2016 1:37 am

I also wanted to note that last year I had an amazing year. My vulva and vagina felt almost totally normal, I was having sex with my boyfriend once or twice a week, and it would have been more often if possible. This problem only started after coming OFF of birth control, so I wonder if it could be hormone related after all. It's so frustrating to not have a clear idea of how to get better

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Re: New here, looking for some support.

Post  PhoenixFire on Fri Nov 18, 2016 1:43 am

One last thing! And this really is the last thing. Has anyone ever had a bad reaction to boric acid suppositories? I used one today because they've worked so well for me in the past without side effects, but not only did it make my pain worse (I'm sure it's because this isn't an infection, and because I've been imflamed for so long) but I've also been feeling really tired, spacey, and just off. I feel like it might be a reaction, and it's honestly a little scary

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Re: New here, looking for some support.

Post  PainBlogger on Sun Nov 20, 2016 10:35 pm

Sorry that you're feeling bad with this horrible condition.

My problems also started with a UTI (and concurrent thrush). You can read here what I've tried: http://vulvodyniasupport.forumotion.net/t2291-four-months-of-significant-improvement

I need to update that thread again as I'm still doing well. Duloxetine has been a really big help to me. My average daily pain is now 1/10 and I'm pain-free much of the time. But it took me a while of trying unsuccessful treatments before I found what worked.

Has any doctor mentioned fibromyalgia to you? If you're getting back pain, headaches and tiredness as well as vulval pain then maybe you have a more widespread chronic pain condition. Would you be able to see a pain specialist?

I hope you find something or combination of things that works for you soon.

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Re: New here, looking for some support.

Post  PhoenixFire on Fri Nov 25, 2016 4:51 am

Thank you for the reply! I've actually been looking into fibromyalgia, since I've been getting lower and mid back pain that is like a radiating burning, pain in my pelvic bones, upper back pain, muscles pains that aren't from exercise, fatigue, etc. And of course the ever present vulva burning, I'm laying in bed with an ice pack down there as I type this. Sad
I also had a bit of a scare because I was taking antibiotics for a suspected uti, but a few days into it I woke up with a high fever, headache, lower back pain, dizziness. I went right back to the doctor, but she said she thought it was a virus because they didn't find bacteria in my urine. Luckily after one miserable day my fever was gone, and I felt a lot better. Still not feeling great, but that's been my life lately. Maybe a pain specialist is somewhere to look, but I'm only 23 with limited funds unfortunately.

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Re: New here, looking for some support.

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