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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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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, …

Comments: 3

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


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

One year with VV/ Where my pain is now

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One year with VV/ Where my pain is now

Post  mars215 on Fri Aug 24, 2012 1:33 am

Hi all,

My name is Mars and I was diagnosed with VV/IC/and Pelvic Floor Dysfunction about a year ago... I've been living with the symptoms for about 18 months... but I'm glad to say that my pain has gotten A LOT better. I hope this story gives some of you some comfort...

About 18 months ago, I contracted a UTI that wouldn't go away. My primary doctor gave me 3 rounds of antibiotics... they made me feel sick and even though my cultures would turn up negative after, my body didn't really feel the same. The pain started in my left pelvic area, kind of by my waist... I wasn't sure what it was and when I would go to my doctor, she didn't really know how to deal with it... I noticed that the pain was worst after eating food or drinking (anything). At one point, I felt pain following a drink of water, and the pain actually followed where the water was going. Weird. Anyways, my doc finally referred me to a urologist and it was there that I got my trio of diagnoses. At that time, I had provoked VV... so I didn't notice the pain unless there was contact. But a month later, I started feeling a burning/stinging sensation down there and I thought I had UTIs again... the cultures were always negative, and thank God my uro didn't prescribe antibiotics until she received the results of the cultures. The pain was worse after eating anything acidic...stress... sitting for long periods (which is tough bc i'm a student)...any kind of sexual activity (even just being aroused)... tight clothes... and before/during my period. I would say that in the beginning, i would be in pain for 75% of the day... everyday....the worst being a level 9/10... the best being a 4...

I started treatment in November; first, a topical cream called traumeel that helped with inflammation and pain. A few weeks after traumeel, i started on vaginal valium suppositories. These changed everything. They targeted my highly tight and wound up muscles down there. I was a little bit apprehensive about the valium, but it gave me such relief and i found my pain decreasing significantly. At the end of december, I started pelvic floor physical therapy... basically, imagine a clam tightly shut... that was my hoohaa... the pt helped me to relax and re-train my muscles so that i could relax them when i felt them tightening up. my muscles and tissues started improving... they weren't overly tight all the time, so the quality of the tissue got better and i think that helped with the pain. When i wasn't with my pt, i was using dilators at home, to help stretch and exercise the muscles... i also worked out my core muscles (everything is connected, ya know?) at pt and at home.

I completed my pt in about 4 months (10 sessions?)... and right around the same time, my uro decreased my valium from every night to every other night... a month later, she decreased it again to every 2 nights... and now, i only use them as needed...maybe once a week. At one point, i was getting trigger point injections of traumeel... these were really painful (for about 5 seconds) but they definitely brought relief... my insurance stopped covering them though, so i haven't had them done in a while.

Physically, i feel much better... i go days without having a flare... and the worst is still what i described above (stress, period, sitting)... but i've been able to manage the pain and my own reactions to it. I'm not sure if i will ever be 100% but i would say i am at about 85% and very thankful... Mentally, it was super difficult and I lost my sense of self, self-esteem.... self-confidence in my body (this issue deserves it's own post)... but i am slowly starting to find healing and beauty again. I gained a lot of weight throughout this whole ordeal, but I recently made it a goal to lose it... i didn't want to punish my body... i wanted to nurture it back to health... so i started yoga about 8 months ago, and not only has it helped me become stronger and leaner, it has also helped me manage my stress and anxiety. i HIGHLY recommend doing a gentle, restorative yoga to help with VV.

So here I am, about a year since I was diagnosed... I have come a long way with my body... first HATING IT... then learning about it.... soon understanding it... and now, appreciating it (it's not perfect, but it's mine!). I know that the treatments I mentioned above may not work for everyone... but i'm hopeful that there will be something out there to give you relief... I think the number one thing is finding it in yourself not to hate your body... being able to make peace with the pain... and being able to find a way to manage your life with VV... each day, i try not to envy other people who have normal hoohaas... i try not to be angry at my body when i'm in pain... and i try not to bring myself down...

I hope this post helps... feel free to message me or ask questions... take care everybody <3



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Join date : 2011-11-10
Location : Philadelphia, PA, USA

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Re: One year with VV/ Where my pain is now

Post  Loulou on Sun Aug 26, 2012 11:56 am

Hi Mars

Thanks for sharing your story - its great to hear some good news!

I totally agree with you about doing gentle yoga. I have found it really helpful in getting my pain down and it makes me feel better overall, as if my body is getting stronger and therefore better able to help heal itself. And like you, making friends with my body again just makes me feel happier.

Hope your progress continues.


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Re: One year with VV/ Where my pain is now

Post  mars215 on Sun Sep 09, 2012 12:29 am

Thanks, Loulou. Wishing u all the best Smile


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Re: One year with VV/ Where my pain is now

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