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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


Looking for community and maybe some words of encouragemenr

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Looking for community and maybe some words of encouragemenr

Post  sophstew24 on Wed Jul 12, 2017 2:35 pm

Hi there!
I just joined this morning and wanted to share my journey. I am 24 years old and have had vulvodynia for about 2 years now. I was put on 80mg of amytryptiline and pelvic floor therapy which did reduce the pain, but a full vestibulectomy was recommended. This past December, I had Dr. Wang in Greenville, SC perform the surgery so I guess that puts me 6 months out. I am now down to 20mg of the pills and back to PT. I have also started using dilators as well. I am still having pain although much less, however I was hoping for a 100% recovery! I have been told by my new doctor that I have no scar tissue and the only portion of damage that still remains is near the opening of my vagina. Pain scores of the rest of the skin have been cut in half, which is great news. She tells me not to lose hope, as I can be healing for upwards of a year with how much was taken and the area of the surgery. I was just hoping to hear from anyone whose story sounds similar to mine? I have a wonderfully supportive boyfriend who isn't concerned at all about sex, but eventually I would love to achieve a somewhat normal sex life. Any advice?? Or maybe other things I can try?

Thanks,
Sophie

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Re: Looking for community and maybe some words of encouragemenr

Post  PainBlogger on Fri Jul 14, 2017 7:57 am

I haven't had surgery but do have experience of needing to use dilators and PT. Time and patience is the key but they definitely helped me. If you want to read my history you can do so here to avoid me retyping: http://vulvodyniasupport.forumotion.net/t2291-four-months-of-significant-improvement

It's great that you have a supportive boyfriend. My husband has been patient throughout and that's been invaluable to me. Certainly try to stay positive that you can achieve a normal sex life. Don't try to rush the dilator exercises/PT. Listen to your body and also it can help to record your progress in a diary so you can look back and see how you're doing. Good luck.


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Re: Looking for community and maybe some words of encouragemenr

Post  sj17 on Sat Aug 26, 2017 3:54 pm

Hi Sophie,

Just wondering what your recovery was like after the op. Did you still have flares of pain for a few days and so forth? How did it feel?

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Re: Looking for community and maybe some words of encouragemenr

Post  tinkerbelle2 on Sat Sep 16, 2017 1:34 pm

sophstew24 wrote:Hi there!
I just joined this morning and wanted to share my journey. I am 24 years old and have had vulvodynia for about 2 years now. I was put on 80mg of amytryptiline and pelvic floor therapy which did reduce the pain, but a full vestibulectomy was recommended. This past December, I had Dr. Wang in Greenville, SC perform the surgery so I guess that puts me 6 months out. I am now down to 20mg of the pills and back to PT. I have also started using dilators as well. I am still having pain although much less, however I was hoping for a 100% recovery! I have been told by my new doctor that I have no scar tissue and the only portion of damage that still remains is near the opening of my vagina. Pain scores of the rest of the skin have been cut in half, which is great news. She tells me not to lose hope, as I can be healing for upwards of a year with how much was taken and the area of the surgery. I was just hoping to hear from anyone whose story sounds similar to mine? I have a wonderfully supportive boyfriend who isn't concerned at all about sex, but eventually I would love to achieve a somewhat normal sex life. Any advice?? Or maybe other things I can try?

Thanks,
Sophie

Hi Sophie, and welcome! Smile I am the same age as you but from the UK.. I have also suffered for years. Have tried amitryptline too though I gave up with it too soon to know whether it would've been helpful to me. I had some weird side effects on it that I couldn't persevere with like blurred vision (but nobody reading this and be discouraged by that as one person may have side effects on a medication that someone else doesn't experience at all so please don't rule anything out!!) Well done on going ahead with the surgery, it sounds as if it has gone well! Great to hear. Even if the pain is not fully gone but greatly reduced that is still a victory. And you are still in early days, healing can take time. I would also love to achieve a somewhat normal sex life too! My best advice would just be to not put pressure on yourself. If you feel ready to give it a go, try and relax and not put too much expectation on it, just see what happens. Have a couple drinks beforehand if that may ease any anxiety and make sure you are - sorry haha - well lubricated! I have used a good gel called Sylk which helps if you need extra. I think the dilators and seeing the PT hopefully should help you to relax the muscles also. I'm still on my own journey and quite inexperienced in all this when it comes to the medical side of it all.... But just do what feels right for you Smile
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