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» What's next?
Fri Apr 20, 2018 10:07 am by amyhp

» HELP!! Topical cream?
Mon Apr 16, 2018 5:49 pm by Sad

» Please tell me this can get better
Sun Apr 15, 2018 11:31 am by amf329

» Pressure to have sex.
Sun Apr 15, 2018 2:00 am by Sad

» Vulvodynia and other neurological diseases?
Sat Apr 14, 2018 8:00 pm by wuhujen

» I'M NEW - Do I listen to my gyno who I feel has it wrong?
Sat Apr 14, 2018 7:57 pm by wuhujen

» I wanted to share a resource that has made a huge difference for me
Wed Apr 11, 2018 9:28 pm by amf329

» Loneliness
Wed Apr 11, 2018 11:36 am by sophiarp

» I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone
Fri Apr 06, 2018 4:06 am by Warrior2010

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: 4

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: 3

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

Somebody please help me...

Fri Nov 24, 2017 8:05 am by Andlag

Hey everyone,

since I started being sexually active i often experienced burning in my vagina which was often worse during sex /around the time of my period or when using lubricants. I was never able to use tampons because the one time i tried putting them in it felt like acid was poured on my skin. Fast forward to 2 months ago when I got a UTI and an allergic reaction in my vagina. I thought it …

Comments: 14

Lidocaine with condoms?

Wed Mar 21, 2018 10:44 pm by AEM1

Hi everyone! My doctor just prescribed me a topical lidocaine to administer before sex, but I forgot to ask if it is okay to use with condoms. Has anyone else used this before and know it is safe to use with condoms? Thanks! Very Happy
Unrelated, but I just started Lyrica a few weeks ago...no changes yet, but I'm hopeful something will come out of it. 3 years with vulvodynia and unable to have sex …

Comments: 1

Constant pain, I want to die.

Fri Jun 02, 2017 4:29 am by Meggiemay

I posted on here a few years ago but my symptoms went away with the inflammation. I didn't get so lucky this time.

For over three months, i've had terrible rawness, burning, soreness in the urethral/vestibule area and pressure/hypersensitivity in the clitoral area. I've also had some lower abdominal pressure and burning on my butt. I can barely walk! My gyno hasn't been much help. I'm on …

Comments: 23

Recently Diagnosed which has motivated my research study

Tue Mar 06, 2018 4:54 pm by ebclose2free

Hi everyone,

My name is Eliza Barach and I was diagnosed with vulvodynia in October of 2017. I'm also PhD student at the State University of New York at Albany. I work several professors at SUNY, but one in particular, Dr. Mitch Earleywine researches marijuana and its possible efficacy as an alternative treatment. Our previous examined cannabis and symptoms of PMS/PMDD and found that women …

Comments: 0

MAY HAVE FOUND A CURE- PLEASE READ

Thu Feb 15, 2018 10:04 pm by infinitelywondering

Dear all,

Today has been the day I've been waiting for. The day something FINALLY makes sense.
I've been told countless times that I've got nerve damage or a muscular condition, yet none of the specific treatments have helped me. My GP suggested attacking this from a different angle so referred me to a dermatologist specialist


after having a vestibulectomy with no success, I decided to visit …

Comments: 3

New and desperate for advice

Sat Mar 03, 2018 2:37 pm by srbry

Hi everyone,

I'm new here and was told to find a support group because this is all getting a bit much really...

I lost my virginity when I was 18 and it hurt - that was normal. Loads of women had told me that it hurt so that was fine I didn't question that. I was with the same guy for a couple of months and each time after that it was uncomfortable and not great. I didn't tell him because I …

Comments: 3


hi all new possible diagnosis of vulvodynia

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hi all new possible diagnosis of vulvodynia

Post  princesst124 on Wed Jul 16, 2014 6:27 pm

I just went to my GYN nurse and she believes I have nerve pain and she wants me to see a vulva specialist. I am B R O K E! We live in the US , have insurance through my husband's work but it's minimal. The last time I had female pain it was constant cramps and they said I had a weak lower pelvic floor. I went to a female physical therapist.  The out of pocket expense was over $700! I knew I most likely would need a female pt again after giving birth. What did you all do for vulva pain? Any tips even if sexual/gross, would be appreciated.

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Re: hi all new possible diagnosis of vulvodynia

Post  bvnh13 on Wed Jul 16, 2014 6:54 pm

My Vulvodynia is nerve related..I did not relief until my ObGyn prescribed me Lyrica and Elavil....The Lyrica is very expensive its over 500$ , theres no generic yet. Im lucky that i have great insurance that will pay for it. Other things is I eat a low Oxalate diet, take vit e/a/b12/b6/zinc, omega fish , grapeseed extract/aloe capsules/calcium citrate/magnisium and potasium. I drink only high PH water (8.Cool and wear white cotton underwear only. Aveeno oatmeat baths help too. I also get acupunture every week. Im about 90% pain free now and if I start to get irratated Its like 2/10 and doesnt last long at all...hope you get relief soon

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Re: hi all new possible diagnosis of vulvodynia

Post  princesst124 on Wed Jul 16, 2014 6:59 pm

I would prefer not to take lyrica! Can't do the other stuff you mentioned either Sad .

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Re: hi all new possible diagnosis of vulvodynia

Post  Caropes on Wed Jul 16, 2014 8:00 pm

Hey Princesst124. Where in the u.s. Do you live? How long have you had problems? What is your history. I was recently diagnosed and am still in the process of finding treatment.

Caropes

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Re: hi all new possible diagnosis of vulvodynia

Post  Alana3 on Wed Jul 16, 2014 9:20 pm

I live in the states and finally had surgery to get rid of it but you have to jump thru hoops for that. Where do you live?

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Re: hi all new possible diagnosis of vulvodynia

Post  princesst124 on Wed Jul 16, 2014 11:39 pm

Boston area.

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Re: hi all new possible diagnosis of vulvodynia

Post  princesst124 on Wed Jul 16, 2014 11:41 pm

Caropes

I thought I replied to you. not sure if it didn't post or got deleted for some reason. I have polycystic ovarian syndrome, hyperthyroid, obesity caused by the previous, endometriosis, and anxiety.

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Re: hi all new possible diagnosis of vulvodynia

Post  Alana3 on Thu Jul 17, 2014 12:42 am

Dr Goldstein is a good doc if you haven't already seen him Smile

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Re: hi all new possible diagnosis of vulvodynia

Post  princesst124 on Thu Jul 17, 2014 12:51 am

Thanks Alana but I got a recommendation for someone in Burlington. I live closer to there.

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Re: hi all new possible diagnosis of vulvodynia

Post  Leslieg on Thu Jul 17, 2014 1:27 am

Hi Princess, I go to the specialist in Burlington, ma too. I hope you're pain free soon.

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Re: hi all new possible diagnosis of vulvodynia

Post  Leslieg on Thu Jul 17, 2014 1:33 am

While you're waiting for an appointment, the standard stuff is:
Minimal soap there, only water; cotton underwear only; rinse w/ little water bottle after urinating; ice packs or frozen peas (20 min); warm water soaks; loose fit clothing.
Monitor pain to determine triggers....
Some girls have tried coconut oil to soothe. If its truly nerve pain....ice packs will be your best friend. xo

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Re: hi all new possible diagnosis of vulvodynia

Post  princesst124 on Thu Jul 17, 2014 11:06 am

Leslie,

Luckily it's only when touched. So it's got to be nerve pain. I do wear cotton panties, I never use soap inside unless I feel gross from menstruation / discharge. I have noticed I'm itchy though alot lately is that part of it? I still have my water bottle from giving birth , I could rinse with that. And I LOVE ice for muscle pain. It will be interesting to see what she can do. I would prefer not to take any meds if possible maybe just before intercourse would be ok. The topical sounds interesting but I don't want it getting on my husband.


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Re: hi all new possible diagnosis of vulvodynia

Post  Alana3 on Thu Jul 17, 2014 3:04 pm

When I was going thru vulvodynia, I used a baking soda and water combination made it into a paste and put it down there for about ten minutes and washed away with warm water.  Supposedly baking soda allows your pH to become a little more normal and I will tell you I had INSTANT relief.  I did it twice a day and it allowed me to get thru my day a little better.  Also, massage and/or acupuncture helped me a lot.  If yours is only when touched, you sound a lot like me!  Mine started to get worse towards the end because my muscles were compromised as well at that point.  I also tried physical therapy- before and after my surgery and got relief both times.  My doc made me a compound of amitriptyline/gabapentin/lidocaine which I applied 3 times a day.  This was so I wouldn't get any of the side effects common with the oral drugs.  I would apply it right to the area for 6 weeks.  It unfortunately didn't work for me, but my doc has gotten a good response about 65% of the time.  So it's something to maybe try!

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Re: hi all new possible diagnosis of vulvodynia

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