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Looking for a friend IRL; LA/OC

Tue Jul 18, 2017 2:51 am by crypticcalico

Hello!

I am hoping to find a friend in the LA/OC area that I can meet up with in person. I live in Long Beach, California and I am willing to drive a bit to meet. The only person that I've told about this is my doctor(s) and someone who couldn't wrap their brain around it. It would be nice to be able to talk to someone else who understands.

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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 …

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Owner of vulvodyniSuppoet.com

Wed Jul 19, 2017 10:28 pm by LaurenVV

Hi, I started vulvodyniasupport.com at the age of 28.
I was a leader when there was no help, no forums etc.

As I went on my path, I found acupuncture, herbs and time helped me recover.
Most never do.

I met a wonderful woman named Hanna. She was a patient and became a support leader. She lived in FLoroda.

I have moved on from the support world and found a career that allowed
Me to bring my …

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anyone from southern california in here?

Tue Jul 12, 2011 6:43 pm by Melissa777

Hi Im just wondering if anyone here is from so cal- USA
I am in san diego- but from LA!!!

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Anyone else try Cold Laser therapy/ Low Level Laser Therapy for their vestibulodynia?

Tue Jul 04, 2017 9:01 am by Tired89

Hello everyone. It's been quite a long time since I've posted. I've been extremely depressed and bottling it all up. I've been seeing a pelvic floor therapist (it's only been 4 visits) for my provoked vestibulodynia and the only reason she can get inside of me to do myofascial release and to use the dilators is because I use BLT (benzocaine, lidocaine, tetracaine) ointment on my vestibule prior …

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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: 1

New member

Sat Mar 18, 2017 7:37 pm by Lisa1627

Hi ladies. I am new to the forum. I have had what I think is vulvodynia caused from hsv 2. So not only do I have the burning vag but the constant feeling of being contagious. I can honestly say that I hate my life and myself right now. There are days when I think I would rather be dead. I tried the amitryptline and it helped but if it's only making my brain think I don't have pain then it's …

Comments: 12

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 …

Comments: 3

Recovered from Vulvodynia

Thu May 04, 2017 9:42 pm by chancesunny

Hey everyone,

Im a new member on this forum and wanted to share my story so I can help anyone who is feeling helpless. Maybe what worked for me can work for you. I'll try to make this short so you can go get better!

I had vulvodynia for about 3-4 years. In the beginning, it started with pain that I thought was just a yeast infection and then I thought it was a urinary tract infection or …

Comments: 2


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.

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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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