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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 …

Comments: 1

I'M NEW - Do I listen to my gyno who I feel has it wrong?

Fri Mar 09, 2018 6:17 pm by Tunes25

Hello!

I am a 25 year old woman and wanted to share my story here as I feel frustrated by the suggestions of my gyno and am hoping for some advice.

To give the context for this: in September 2016 I moved in with my long term boyfriend after living abroad a year and (nearly) abstaining from sex. Within a few weeks I had got a yeast infection which I treated myself successfully, but then 2 weeks …

Comments: 8

Gabapentin Gel. or other topical creams

Thu May 10, 2018 9:43 am by Rosie21

Hi I have been suffering for some years with this abominable pain. I have tried most of the systemic drugs , I asked specialists and Doctors if I could at least try a topical treatment but because this requires a special prescription have been refused Has anybody had a chance of trying these? Thank you I will try to put a link on to some of the research into Gabapentin Gel. Thanks.

Comments: 1

What has been helping ME (much less pain over time!!)

Wed May 16, 2018 3:43 am by leoscc

Hello everyone! I vanished for quite some time as my life became consumed by not only this but other daily responsibilities as well. Shortly after my diagnosis, my boyfriend f 3 years left me as he did not want to deal with this. It left me broken for a while but also gave me time to figure out what the heck was going on. So, I will write out a quick list of my symptoms and what helped me.

1. I …

Comments: 0

I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone

Mon Mar 12, 2018 4:33 pm by totallycured

Hi,

Every so often I'm reminded of the constant, persistent, horrible pain I was in two decades ago, and I reach out to try to help others who are suffering. If someone had offered me a solution during that terrible time, I'd have jumped at it. I hope this helps someone.

Yes, I did have terrible vulvodynia. It felt like someone poured acid all over my vulva. My doctor confirmed it and was …

Comments: 4

Condoms Less Painful?

Mon May 07, 2018 3:35 am by stillinpain

I'm just curious, has anyone found using condoms to be less abrasive to the skin than without? I just got off birth control and haven't stretched myself out enough post surgery to try sex yet, but when I do I am wondering how trying it with condoms with affect the sensation. I feel like for me the skin to skin sensation creates pain, not just at my entrance but internally, too, since I also have …

Comments: 0

Will there be an end?

Fri Apr 27, 2018 12:06 am by Krista2828

I go in and out of being okay and not being okay with this condition. I question often why me? I am a problem solver by nature and I feel so defeated that after tons of research and trial and error and doctors and tears that there still is no answer.

I am in my 20's.. it shouldn't be this way.

Id love to know what all has worked! I am willing to try anything to get my life back. I am curious …

Comments: 6

you can be healed so easy and quite fast.

Thu Apr 26, 2018 11:46 pm by pussycat

Hello everyone,
i am new to this forum. I wanted to share my personal "journey" with V with you and to give you a real hope you can be totally healed/recovered from V. Many years ago i was struck with V, it was painful and got worst and worst, eventually i could not sit, could not stand, could not walk, could not swim in a swimming pool anymore. I was becoming bedridden, it frightened …

Comments: 4

Hi Im from Australia :)

Sat Jan 08, 2011 1:08 am by emma

Hi girls... I live in Australia.
I am currently undergoing a new treatment for vulvodynia. Just wondering if anyone else here has tried it. It's Endep in the form of cream to apply directly on the area. I dont know if anyone else has tried this but so far evidently it has had a 50% success rate.
Anyway i feel at a loss. This new treatment is exciting but at the same time i just dont feel like …

Comments: 35


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

mars

mars215

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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.
x

Loulou

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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

mars215

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

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