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Recent "Poke" Pain - So Confused/Losing My Mind

Thu Oct 12, 2017 9:26 am by kelseybeth23

Long Story, but I am losing my mind and getting really depressed, so if I tell the full story maybe someone can help me.

Back in August I started to get an itch down there. Normally, in the past, when this would happen, I would change the way I wore my clothes, take more baths instead of showers, and use Monistat. This time, after about two weeks of no relief, I started to get concerned. I was …

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Does anyone else experience this?

Sat Oct 14, 2017 5:21 pm by Angelmegs

Hi— im new here. Im incredibly desperate so if anyone has any suggestions i would greatly appreciate it. Im a 20 year old female with vulvodynia and vaginismus. I was on the birth control pill (junel fe lo estrin) from age 13-18 because of severe menstrual pain. I used the xulane patch for a few months when i was 18 but eventually stopped BC altogether because it interferes with my med for …

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Newly diagnosed

Tue Oct 10, 2017 8:37 pm by Brevispink

Hello everyone. I have recently been diagnosed with unprovoked vulvodynia and would really appreciate some advice and support. I have had a chronic urine infection for 16 months and was on antibiotics for 9 of those months. I have been very uncomfortable for the entire time, but now I have absolutely unbearable stinging and burning all day with itching too. The infection has just about gone, …

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Post Full Vestibulectomy - 5 Years Later - Please Read

Tue May 02, 2017 6:18 pm by jen007

Hi All,

It's been awhile since I've written a new topic on the forum. Wondering if any of the same ladies are still here. I've come back to update you all on my post vestibulectomy results. I can't remember if I've done an update on my current state, so forgive me if this is repeated information... I can't remember how to view my old posts! Anyway, let me get on with my update.

For 4 years post …

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Do you ever worry that you're making it up?

Fri May 27, 2016 6:50 am by Lucci

Hello,

I was diagnosed with Vaginismus and Vulvar Vestibulitis 10 years ago. I was 18 and scared and moving across the country for college, but luckily was able to find a doctor who specialized in 'Women's Health' who immediately put me into physical therapy. Long story short, I've been in and out of the system ever since.

A few years into treatment, I had the diagnosis of PTSD added on for …

Comments: 7

Clitoris Issues

Tue Apr 28, 2015 8:17 pm by January

I am going crazyyy trying to figure out what's wrong. Please does anyone else have an issue similar to mine? I'm only 22. So, basically when my clit is lightly rubbed, there is no feeling. However, when rubbed vigorously and directly, the burning and tingling sensations shoot down my legs and feet as if coming to the end of an orgasm but with no good feeling leading up. It's so strange. What …

Comments: 2

Cured of Vulvodynia

Wed Aug 17, 2016 1:39 am by angelique2016

I used to post on this forum a long time ago and told everyone of how I was cured of my vulvodynia by a (Melbourne Australia) female dermatologist, she put me on very low doses of Nortriptyline (Allergron) for pain management about 10mgs I believe it was, and she also had me use Advantan Fatty Ointment (not the cream) (although I saw the cream for sale on ebay from germany) so it might help, as …

Comments: 10

Vulvodynia and IVF? Anyone done this? What does it do to the vulvadynia?

Sun Jul 30, 2017 1:03 am by Carolyn4

Hi everyone,

I have had vulvodynia since age 27--I am now 43 and it has been in pretty good remission.  I control it with acupuncture and herbs, and some cranial sacral therapy.  I have a 5 year old, had a pretty uneventful pregnancy which ended in a c-section.  My VV worsened after that, and I have worked hard to get it back under control (it took over a year to get it back into pretty good …

Comments: 1

Partial Vestibulectomy

Mon Jul 31, 2017 6:44 pm by JGD13

Hi all i am new here.
I had a partial vestibulectomy 21/7 for my provoked vulvodynia.
After a painful few days and feeling quite uncomfortable it seemed to get better. 1 week after i noticed some white stuff and gloopy discharge, it wasnt smelly or itchy but i got a check up at the gp surgery and the doctor said the stitches looked fine and i could just have a touch of thrush. He said this is …

Comments: 6


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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