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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.

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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 …

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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


Feeling Hopeless

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Feeling Hopeless

Post  carby148 on Mon Feb 04, 2013 6:26 am

First and foremost, I want to say thank you again for having a site like this. I am looking for some support as I don't feel I've had the opportunity to really sit down and talk to anyone about this.

I'm 26, married, no kids of my own. I haven't been formally diagnosed with vulvodynia yet, but by the time I see a gynecologist about it, it will almost be four months that I've struggled with chronic vulva (labia majora) pain and irritation.

I know four months is such a short amount of time compared to the many women who have this, but if this is something I indeed suffer from, the thought of possibly having to live with this for months, years, or my entire life scares me.

Back in early November of 2012 I began feeling a throbbing in my vagina, and since then I've experienced irritation in my urethra and labia majora. In a nutshell, it feels like I will need to urinate and my labia majora feels bruised to the touch. Aside from when I'm not wearing any underwear, I have constant soreness.

What frustrates me most, is in the last three months, I've been to my general practitioner about five times, and although my primary complaint was the pain, these concerns were completely ignored and overshadowed by the fact that I kept getting diagnosed with yeast infections (atypical symptoms, although still very much present despite recurrent treatment).

The pain was attributed to the constant yeast, and despite being on yeast infection medication week after week, the pain never subsided.

I finally called a gynecologist last week, and although they didn't do anything but a swab test again (to see if I had yet another yeast infection), she was the first person to mention vulvodynia as a possible cause.

She told me not to worry, but did prepare me that it may take a few visits to officially diagnose me as they would have to rule out everything else.

She referred me to another gynecologist who knew more about it than her, but I don't have an appointment until the 20th of February.

I'm a little upset she set the appointment so far out, but I guess on the bright side, if they aren't worried to the point of making me an emergency appointment, I guess I can live with it for the next two weeks.

The pain isn't bad enough to take off work, and there are times when I am so used to it that I can't feel it, but I know it's never gone.

It's making me depressed and it has put a wedge in my marriage, at least from my perspective. I've cried a few times over this, just because I never would have thought it would affect me this deeply (emotionally).

I just hope there are people here who can understand, because at times I feel like it's all just in my head...especially when I feel my previous doctor just didn't even listen.

Thanks for letting me share my story!
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Re: Feeling Hopeless

Post  jen007 on Mon Feb 04, 2013 2:42 pm

carby148,

Usually a sure fire sign of vulvodynia is constant or chronic yeast infections. I used to have yeast infections all the time for a long time Crying or Very sad . Plus when ever I'd take the medications to clear it up none of them ever worked and even if it did the infect would come back just a few days later. One thing I did was change my under wear to 100% cotton. Cotton is a more breathable material and helps keep the moisture out that would cause yeast to develop. Another thing you could try is changing your soaps with you bathe. I only use fragrance free ivory soap on my area. For my body I still continue to use regular scented soaps. One last thing you could do is ask your doctor to prescribe you 5% lidocaine cream. It temporarily numbs out the areas you put in on. If you do get it be sure to mix it with a little lubricant. Alone the lidocaine can burn until it starts to actually work. When you mix the two it won't burn or make you feel worse.

I completely understand how you feel. I used to feel so alone and in the dark with this. I'd cry all of the time. Plus I had. and still have, a boyfriend since the beginning of this which was hard. We could never be intimate or anything because it was too painful. I had surgery last July to somewhat get rid of my vulvodynia (a vestibulectomy). I only did this as a last resort. I had tried everything to no avail. My pain was all internal so the just cut out my most painful areas and now I don't really have any pain anymore. But you still have a long way to go in this.

Do you have internal pain or is it only external?

Also if you don't think your doctor/ doctors have been properly treating you there is a website you can go to that will help you find specialists in your area. You have to join the group and make a donation, but it's totally worth it. It's called the NVA. They also send you a little news letter every month giving you the latest information on vulvodynia and other related conditions. When they send it it's sent in a discrete package so the information is kept private. I'll link it for you down below if you'd like to check it out.

http://www.nva.org/

Hope this helps!

-Jen

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Re: Feeling Hopeless

Post  carby148 on Mon Feb 04, 2013 5:58 pm

Wow, thank you so much for all that information!

I've tried all the "typical" things the doctors and websites tell you to do...I've always worn cotton underwear, but have ditched wearing daily pantiliners (I get daily discharge, always have since puberty). I switched to cotton leggings (although I find it doesn't do much in terms of pain relief), I eat yogurt every day, I blow dry the area instead of using towels after showers, tried topical over the counter yeast infection medication, diaper rash medication, nothing has helped.

I'm hoping on the 20th they will finally be able to give me some real options as opposed to options that would only cure a yeast infection.

The pain is only external (thank goodness) and is mostly mild. The pain is usually only to the touch, so I do get some relief when I'm able to walk around with no underwear or pants on. But even right now, as I sit here on the couch, I can feel my thighs pressing against my labia majora and it's sore.

Almost how it would feel if you bruised the area, or wore tight pants for too long, or when your pubic hair starts to grow back (I don't know if that's common for everyone, but for me, sometimes it hurts when my hair starts growing back, lol). Oh, and I stopped shaving down there...which I hate...it's like a jungle!
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Re: Feeling Hopeless

Post  jen007 on Mon Feb 04, 2013 6:05 pm

I felt the same way for a while. I had no external pain, but I couldn't wait to get home after school everyday to take my pants off...I suffered through my skinny jeans because I love them so much. I started wearing jeggings which helped a little. I always felt tight and a pressure like feeling, plus the yeast. It wasn't a good mix.

My on doctor told me to stop shaving to. She thought that I might have been irritating it too much, but it didn't change anything. She told told me stop wearing tampons and wear pads during my period. I'd also suffer through my period, tampons hurt so bad, but I hated wearing pads. I tried that and the pads actually irritated me more because of the constant rubbing and contact to my skin.

I know one thing that can cause vulvodynia is birth control. Are you on any?

-Jen

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Re: Feeling Hopeless

Post  carby148 on Mon Feb 04, 2013 6:15 pm

No, not on any birth control. My husband doesn't use condoms either. (Long story short, the odds of him getting me pregnant is slim, but if we fell pregnant, we would be happy.)

It's always been painful with sex; as a young teen I was never able to insert tampons. I chalked it up to vaginismus and me being so tiny, but sex has been a difficult thing to bear. We weren't even able to have sex on my wedding night (I was a virgin until then), and it took a while for me to get used to it. Now I am able to have pain free sex, but everything sort of has to align or else that won't happen (I have to be wet enough, he has to be lubricated enough, and it has to be in a particular position). If that doesn't occur, it will be painful during, or it will burn so intensely afterwards I have to just grin and bear it.

I never thought the painful sex was related, but now I'm thinking maybe it is, but the internal vaginal pain is definitely secondary to the vulva pain, especially because I know it's manageable and I'm capable of having pain free sex.
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Re: Feeling Hopeless

Post  mcclave96 on Wed Feb 06, 2013 2:11 pm

When i read your story i think you should talk to your doctor about Physical Therapy....your sex might be causing your labia pain....it is nerves... do some research on physical therapy before seeing you doctor so you are prepared to ask the right questions....i would not use anymore creams...my specialist (who I drove 7 hours to see) suggested using plain vegtable oil....try to relax noticed if you are clenching your body when you stand and walk...If sex is too painful don't do it there are other ways to be intimate....practice breathing....i know it is weird how this is related...Good luck and stay positive it is amazing how much of a difference that has made form...i know it is difficult but try to focus on those times you "forget" about it...I have been thanking God in prayer each time i have a few hours of relief...I noticed my whole attitude is better!!

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Re: Feeling Hopeless

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