Log in

I forgot my password

Latest topics
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 …

Comments: 3

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 …

Comments: 5

Hi girls! New in this forum

Fri Jul 13, 2018 2:31 pm by Gaby

Hi everyone!

Also joining the V club, Here my story:

It all started last year in september with a very bad throat infection for which i had to take antibiotics for about a month. This cause several yeast infections (candidia albicans).... one after the other!. I had them every month from october 2017 till march 2018. During this period i use an incredible amount of anti-fungal creams and …

Comments: 1

Newbie and feeling helpless

Wed Jul 11, 2018 1:52 pm by Taylor1

Hi, I found out a few weeks ago that I have this condition, started off at the end of April as a uti took strong antibiotics then got a thrush infection and now this.. My doctor has tried me on amitriptyline and gabipentin and both made me so poorly I couldn't take it plus I have seen what long use of these drugs has done to my mom for pain and its not good. I am using coconut oil which does …

Comments: 3

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: 6

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 …

Comments: 3

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: 10

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


Looking for community and maybe some words of encouragemenr

Go down

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

sophstew24

Posts : 1
Join date : 2017-07-12

View user profile

Back to top Go down

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.


PainBlogger

Posts : 219
Join date : 2015-07-27

View user profile

Back to top Go down

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?

sj17

Posts : 32
Join date : 2017-05-06

View user profile

Back to top Go down

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
avatar
tinkerbelle2

Posts : 302
Join date : 2013-09-28
Age : 26
Location : Brighton, England, UK.

View user profile

Back to top Go down

Re: Looking for community and maybe some words of encouragemenr

Post  Sponsored content


Sponsored content


Back to top Go down

Back to top

- Similar topics

 
Permissions in this forum:
You cannot reply to topics in this forum