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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


new to the forum, newly diagnosed

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new to the forum, newly diagnosed

Post  It Hurts on Tue Apr 03, 2012 9:22 pm

I've had such stinging pain at the insertion of anything in this area since August 2008. I was six and a half months pregnant and went to my OBGYN immediately and said, "something's wrong". Of course, it was blamed on the pregnancy and the "blood flow" to that area. I had a C-section (age 38 when I had my first and only daughter, Caroline) and waited the 2 months before attempting intercourse. Hurt like the dickens. I even told a friend of mine who was pregnant that "it doesn't matter if you've had a C section or a vaginal birth - both make it so painful to have sex". Little did I know it wasn't the pregnancy....or the C section.....
About 12 months later, I saw my Dr and said "when does the pain of intercourse go away from having a baby?". I got a surprised look. An internal exam showed the skin seemed irritated. Off to a dermatologist I went. Tests done for Lichen Sclerosis were negative. I was diagnosed with acute dermatitis. Got some prescription creams. Nothing helped and meanwhile I am having sex down to once per month at the most. I communicated to my husband that it was just so painful (it was pretty obvious to him because really, sex had become almost an impossibility so he never pressured me, but I admit that any time we did have sex it was SOLELY to try to be a good wife - I had no interest because how can you have interest in something that causes this much pain?). I was given lidocaine and MAYBE it gave some relief but it really just made it so that it was possible to have sex without passing out from pain. I moved to Olympia Washington and got a new Dr and voila - within 20 minutes she told me I have Vulvodinia. I have started Gapabentin and I had intercourse with my husband for the first time in about 2 months about 3 weeks into taking Gabapentin. Sort of helped but even as I write this my privates are stinging from intercourse that happened 2 nights ago. I have an appointment with Multicare Women's Pelvic Medicine and Reconstructive Surgery (George McClure, MC and Danielle Price, MD) scheduled in May. Apparently they are very up to date on vulvodynia. All I can say is the lidocaine and the Gabapentin may help some, but sex is still a painful event. I have heard the condition can go away as quickly as it came and I am just counting the days until that happens. But I may have the surgery - if there is hope of curing it, I WILL have the surgery.
So how are we so unlucky to have this condition? I did have a very big problem with yeast infections in my twenties (I'm turning 42 this year). I also took antibiotics and eventually acutane for my skin. I hear these can be precursors to having vulvodynia. I really hope this just goes away but in the meantime, I am so grateful my husband has been supportive. I read all the things one should do but honestly, taking a warm bath or wearing cotton underwear is not going to solve this problem. It is really severe. I have broken bones and I have arthritis and this is equally up there in terms of affecting what you can and can't do.
Best of luck to all you women. I'll skim through posts here from time to time. I'm glad there's a place we can go and it was great to see some men's perspective. If a man really loves his female partner who has this, then finding any other way to be intimite is what needs to be done. Having intercourse is really quite unhealthy because equating intercourse intimacy with this stinging, burning pain can only be damaging. My husband and I are at the point where we attempt intercourse after I've had new treatment (first a cream for lichen sclerosis - didnt' help, then lidocaine - didn't really help, and now gabapentin - possibly some mild improvement but a mild improvement over really intense pain is still intense pain).

It Hurts

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Age : 46
Location : Olympia, Washington

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Re: new to the forum, newly diagnosed

Post  embem on Sun Apr 08, 2012 9:01 pm

I love your comment "taking a warm bath or wearing cotton underwear is not going to solve this problem." That is so true and is exactly how I feel much of the time! I do my stretches, I use hypoallergenic soap, got 100% cotton underwear, and do everything they say to do, but it makes you wonder if it's really making a difference. I also tried Gabapentin. I'm glad to hear that your husband is so supportive; that makes all of the difference. Good luck!

embem

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Age : 32
Location : NY

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Gurrrllll!!!

Post  lavrose on Sun Apr 29, 2012 1:58 am

I KNOW!!!!

Curing this thing for me has been a PROCESS! It takes time, and requires constant maintainence. I make coconut oil suppositories that I freeze using sport bottle mini ice cube trays. I add 3 drops each of rosemary, lavender, and tea tree oil, and one to two drops Myrrh each suppository. I insert these morning and night until I dont have the pain anymore, and can have functional sex again. I do a maintanence dose once every few days, to a couple times a week. Also, I take a couple spoonfulls of coconut oil everyday, some women claim to prevent it that way, and a few times a week, I take capsules of grapefruit seed extract internally
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lavrose

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New to the Forum and Recently Diagnosed

Post  Trishann on Sun Apr 29, 2012 6:18 am

I, too, am new to the forum and have just been recently diagnosed. I diagnosed myself with vulvadynia after visiting my
primary care physician's office on two different occasions, the ER, and having my Urologist office turn me away. I wasn't
sure who to call next when I thought about my GYN. He was so busy that they asked if I would see the nurse practictioner which I didn't even realize he had hired. I agreed to see anyone who could help with the pain I was having. Little did I know she had never heard of Vulvadynia and she had to look it up on her smart phone or medical phone. After the third visit she confirmed that it was vulvadynia. She did a biopsy, which I later read about on the vulvadynia website, is no longer done for this problem. So she added more pain to what I already was enduring. I endure agonizing pain daily and nothing has helped. Amitryptylene/Nortryptylene only make me groggy to where I can't function and I told the gyn's this upfront. Lidocaine they prescribed didn't help and later the urologist said this could do more harm if used long term than the good it was doing. One doctor prescribes one soap and another changes it so I'm not sure what to use. One physician thinks I should have absolutely no pain medication, while another physician says that noone should live in this much pain and orders pain medication and then the initial physician is upset that I have a pain medication!!! The vulvadynia website has a list of medications listed for our knowledge, yet I am expected to deal with this excruiating pain without anything. I don't want a daily pain medication, but it would be nice to have something to be able to sleep when I have gone days without sleeping from this pain. I can't imagine a physician allowing his wife or daughter to live in this agonizing pain and not providing them with some sort of relief. I am just praying that something happens to make this go nationwide, bring it to the public's attention to get us help! I honestly believe this is why women were commited years ago..they didn't go insane during the change of life...I believe this was happening to many women and they were either ashamed to talk about it or didn't have the vocabulary to describe some of the pain that we encounter! I pray daily that this agonizing, most horrible nerve ending pain I have ever had will go away just like it came...No Warning! Just Disappear!

Trishann

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Re: new to the forum, newly diagnosed

Post  LizLemonny on Sun Apr 29, 2012 9:13 am

To continue with sex it might help to look at my sex tipshttp://www.vulvodyniasupportforum.com/t812-easier-sex#5204

Everything you have said in your post is SO true. When you do have sex and are left with the stinging also feel gently to see if you have any swelling or any slight trace of blood. If you do then you have what I have which is inflamation in the Bartholins glands. They swell up (one on each side of back half of vulva).

LizLemonny

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Re: new to the forum, newly diagnosed

Post  athompson on Mon Apr 30, 2012 1:09 pm

I too have similar symptoms to yours, they all started after the birth of my first son in May 2010. I was 25 at the time, had a third degree tear and was pushing for 2 hours. He was face up presentation aswell. Our first attempt at intercourse afterwards (probably 10 weeks postpartum) wasn't even an option. Things just seemed too tight and even just the touch burned. I went to my family physician who said it takes time and some people have pain for 6 months after. She said to try cortisone creams and Emla (lidocaine) creams. None of this helped. My husband and I got by by doing other things but not without some really difficult days. It is difficult when you feel like the bad one who can't give your husband that part of the relationship. My husband has been VERY supportive thank God. About a year after the pain I got in to see an OB/GYN. She diagnosed me with vulvodynia and suggested trying physio therapy. My first appointment was brutal. The next day I felt like I had just had a child. My whole vulva was raw. I continued going for physio until the beginning of January 2012. It helped relax my muscles and we were even to the point where my husband could get inside me, which was impossible before. In the middle of January my OB/GYN said that she could do a liodcaine/steroid injection into a trigger point. I also started Elavil at this time too. I was pain free for 10 days. When the injection wore off I was in excrutiating pain, things were worse then before the injection and all the work on my muscles went out the door. I had to stop working. I then was referred to a doctor who specialized in pelvic pain. He initially though that my pain was because my muscles were so tense. He did a botox injection into a couple of trigger points. It worked great for relaxing my muscles but did nothing for the burning pain. After this did not work he started to think that my pudendal nerve was involved. He said during pregnancy and long pushing that sometimes the nerve is stretched beyond its capacity and is damaged. This causes the burning, knife like pain. Last week I had a CT guided nerve block. It seems to have helped a little. I have been on Lyrica for about a month and morphine for the pain. I have seen a bit of a difference with the Lyrica. He also presrcibed a amitrytaline/ketamine cream (has to be made at a compounding pharmacy). This has worked miracles for me! It doesn't burn on application and gives releif for a couple of hours. Hope some of this information helps, maybe you too have a damaged pudendal nerve from pregnancy and all the stretching that occurs.
.

athompson

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Re: new to the forum, newly diagnosed

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