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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 …

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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 …

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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


NEED SUPPORT.....

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NEED SUPPORT.....

Post  Guest on Sat Jan 11, 2014 7:10 pm

Hello, I'm 20 and have had vulvodynia since age 14. My problems started with yeast infections then bacterial and this lasted a good 4 months before the doctor decided to check and turns out there was no more infection but just horrible burning pain. I can't sit walk or stand for to long. I was diagnosed with vulvodynia, vestibultis, pelvic floor muscle dysfunction, and neuropathy. I have had almost every treatment including a neurostimulator in my back. I also had the biggest surgery available which is the vestibulectomy. I would be more than happy to share more about my treatments and story through email.

I would love to have a friend who has vulvodynia too so I have someone I can talk to who understands what I go through each day both physically and emotionally.




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Re: NEED SUPPORT.....

Post  Alana3 on Sat Jan 11, 2014 8:50 pm

I had a vestibulectomy too hope yours was successful!! It was the best decision of my life Smile where are you from

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Re: NEED SUPPORT.....

Post  Guest on Sat Jan 11, 2014 10:57 pm

The vestibulectomy took the edge off my pain, I'm still looking for a cure...I'm located in Florida. Where are you from and are you still having pain since the surgery??

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Re: NEED SUPPORT.....

Post  Alana3 on Sat Jan 11, 2014 11:14 pm

Im in florida! Where are you? No my pain is completely gone. When was your surgery?

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Re: NEED SUPPORT.....

Post  Guest on Sun Jan 12, 2014 12:03 am

I'm in Melbourne, I had the surgery about 6 months ago.....it did help take the edge off which is a great help. I had a neurostimulator put in but due to complications it has caused more pain than help......

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Re: NEED SUPPORT.....

Post  Alana3 on Sun Jan 12, 2014 12:08 am

I have no idea what a neurostimulator is so I cant help you with that

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Re: NEED SUPPORT.....

Post  Guest on Sun Jan 12, 2014 12:13 am

Who did your surgery?

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Re: NEED SUPPORT.....

Post  young.sufferer on Tue Jan 14, 2014 12:01 am

You will find lots of support here Smile I'm 25 and just starting to take control of my vulvodynia and try to find some relief. I have posted on this site a couple times and the response has been wonderful, we are all going through the same thing and we are all here for each other. I don't really know how to work this site, but if there is a "Private Message" button, you can message me any time. I'm here for you and I'm struggling too. I am currently looking into treating it with chiropractic care, sent out my first e-mail today. I know it may feel shameful to look for help or talk about your condition, but I think the stigma is being turned down and more people are learning about our conditions. I hope your surgery heals perfectly and that you're free from the pain.

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Re: NEED SUPPORT.....

Post  mary jane on Fri Jan 17, 2014 8:50 pm

a neurostimulator?
I thought that was AFTER you have tried all the medication possible, ketamine infusions, lyrica, narcotics///
after them the are nerve blocks I thought pain pumps and neurostim. are final treatments
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Re: NEED SUPPORT.....

Post  mary jane on Fri Jan 17, 2014 8:57 pm

The biggest problem is we keep bouncing back and forth on these forums and read pro and against opinions on surgeries, medication, whatever else but at the end of the day these are simply statistics!!!!!!
just because it worked for her does not mean anything !!! we have different bodies, amitriptyline works for me, but it will do nothing for the next person and so on... it's maddening
I've read so many vulvodynia stories on vulvodynia.com guestbook my head hurts !!! for some the surgery worked...but then again there are 2 surgeries at least ..one with bartholin gland removal and one without ! for some only the bartholin glands were removed and they were cured, for others no, it was nerve blocks which cured them, for others PT, for others lyrica, ad infinitum !

I can advocate all day long about medication because it works for me, but I have different symptoms and reactions to others.
We NEED DOCTORS to figure this out !!! they need to start paying more attention to these conditions
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Re: NEED SUPPORT.....

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