Vulvodynia & Vestibulitis Helping Each Other A New Vulvodynia and Vestibulitis Support Group

Vulvodynia & Vestibulitis Helping Each Other
A Vulvodynia and Vestibulitis Support Group

Welcome to OUR page ladies!

The Cure?

I am a six year sufferer of VULVODYNIA, though much better at this time, knowing a flare up is possible at any time. I shall post my full story to show my VV woes. I have formed a support group here in South Florida and though it has been very interesting and helpful to us all, we all agreed that such a page as this, will be even more helpful. There are many pages for VV and Vestibulitis, but none are simplified and quick for just plain talk. SO…………..

This is a page only for communicating and helping each other cope and learn new ways (or old) to make us feel better. Not to cure, because this is only communicating with fellow sufferers. So, please keep that in mind when reading or writing on this page.

Please only give first name, state, country and e-mail address (which will not show on your post). Do not give telephone numbers, or home address, since it is an open page. I shall personally check the posts and if there is any unfortunate or harmful message posted, I must delete it. If you give the state/country you live in we can try to match you to someone in your neighborhood, for a possible support group. Please be informative and ask all the questions you still might have.

If you have a doctor or therapist that you have found that can help you with Vulvodynia/Vestibulitis, please post explaining where this person is and how you found him/her to help you. Other ladies in your area then will have a possibility to share in your good fortune. We shall place it in the Doctor Referral page as soon as possible.

If you like the page and wish to communicate with other sufferers after your first visit, PLEASE CLICK HERE TO BOOKMARK THIS PAGE,

DEAR LADIES, I HAVE CREATED A NEW PAGE FOR YOUR PLEASURE, IT IS SO AMAZING THAT WE CONNECT TO EACH OTHER AND BECOME CLOSE AND DO NOT KNOW WHAT THE OTHERS LOOK LIKE. SO I MADE A GALLERY ( On top of the page ) TO PLACE YOUR PHOTOS ON AND SEE HOW THE PERSONS YOU HAVE CONNECTED WITH LOOK . Now you can put a "face on the case". and I shall place your photo in the gallery. I hope you all do so, it will really be great to know the face you are talking to. I hope you enjoy this new thing I thought of... <3......... Hanna

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Hanna	FL	USA	2012-05-19 12:55:48
Hello dear ladies all, I hope you are all having the best possible Saturday..... OLIVIA, glad to have you on the page and I hope you are getting help as well as the love on here. I joined a concierge MD one year and paid money we did not really have, finding out a few months of what seemed a fabulous deal of being spoiled and seen whenever needed, BUT after 6 months, things changed and it was just as difficult to make an appointment, I was rushed through and the miracle turned into a shambles and a waste of money. I do hope your doctor keeps the promises made for the price. Feel well and don't need a doctor...... ASHLEY, I feel strange about the fact that you are not able to discuss your problem with your family, why would you not just say the truth? They love you and would most likely understand, the place of the pain in your body can be anywhere and it is not shameful to have pain in the lower parts of you body. I have never made it secret, I do not blurt out the word of where it is,,, However, each to their own ways of handling things. I do think though that you might be under estimating your loved ones and maybe feel relieved to have them know the horror you have to live with.... PLEASE NOTE, THIS IS ONLY MY OPINION... Love to you all and thank you for being so kind to each other.....Hanna

Sally	NY	USA	2012-05-19 07:27:35
Ashley...Fibbing about my condition worked best for me. Here's how I got around the topic of Vulvodynia with family and friends. I told them I had fibromyalgia. I chose this excuse because I had read that VV could be a a part of Fibro. Therefore...not truly a total lie. There are even commercials about Fibro and Cymbalta..blah..blah. I do not recommend traveling when in a flare....totally not worth it. I went to California in'05 in a terrible flare. I don't even remember the trip. I was walking funny due to the pain...the "Fibro-Excuse" was a saver on that trip. Good luck. Perhaps your family can come visit you??

ANNEMARIE	NJ	usa	2012-05-19 05:15:17
Hello Jessica, yes I remember your name after I completed the post. I will be waiting to hear what the doc. from Boston tells you...Olivia, I use tramadol in pill form...usually and hopefully it will stay this way....I use one 50mg at nite as that is when the pain/pinch/burn is the worst. I also have buttocks pain/burn/. I originally was diag. with Lichens Scelrosus which is under control with clobetasol and estrace hormone creme I would love to hear back from both of you and others....love to you all

Ashley	AB	Canada	2012-05-18 04:49:20
Im going to ask you ladies for some advice. So I've been dealing with this pelvic pain for two years, it's been worse the last 6 months. I haven't told my family about it because well its kind of embarrassing and I always was optimistic it was going to get better with time. My parents just moved to brazil a couple months ago so trying to "cover up" the pain is easier...except for the fact they really want me to come visit this summer with my son. It is a 4 and 10 hour flight. I'm using the excuse that I don't want to fly alone with my two year old and that my hubby can't get time off work. I'd feeling really guilty about lieing and not telling them what's going on but I really don't even know how I would bring the topic up?! How did you tell your family/friends about your condition or have you???

Olivia	Texas	USA	2012-05-17 19:02:05
Hello Ladies, Theresa, a concierge MD is connected to a company that charges $1500 a year for services. The services are an MD that will agree to only have 600 patients max (most docs have up to 1800) I pay quarterly as I am not wealthy, but having been so very sick my grown kids and I decided this option needed to be a priority. I have unlimited access to my MD, and can get an appointment same day if I need it. I can email or text him. He returns my calls within an hour. This has helped me not get sicker and has helped me avoid hospitalizations. As a RN I really decided I needed this while on IV antibiotics around the clock for so many months. After I gave my MD the list of meds I found in your postings ladies, he researched all of them. He called the compounding pharmacy and ordered 2 creams. Estroil and the other is a mix of Amytriptyline, Lyrica, Tramadol and a few other things thrown in. Within 2 two days this 3 week hell period is now ending. I am 70% better! The walker is back in the closet where it belongs. I can still feel a little burning on the right side of the labia majora, the bumps seem to be slowly resolving. Of course I could not get in to a GYN for an exam of these bumps. The fastest appt. I could get was 4 weeks. That is exactly why I joined the MDVIP Concierge group for my Internal Medicine MD. I use the Estriol cream nightly. The "everything but the kitchen sink cream" I use up to 4 times a day. The creams are very light and silky, so did not feel yucky like so many creams and absolutely had no burning!. I will complete this posting later..have to go as my computer needs to be charged right now!! Thinking of all of you. Olivia

Thresa	ILL	USA	2012-05-17 05:03:04
Hello ladies I wanted to get on here tonight and read all the posts. Ellen Heck I hope they don't lower your dosage down UGH. What is it the docs don't understand? We know our own bodies, Obviously they are concerned for the risk fo cancer even withthe biodenticals, I look at it this way, I have had the breast cancer and then got this dreaded problem. I was so damn miserable down there I didn't care anymore, I need the hormones!! I just can't believe lots of women don't have the same issues once menopause hits, Why are we so different UGH!! Iam sure a freak cuz I seem to get everything in the most parts a woman needs. Geesh!! Anyway hello to Charlene my friend, Anne marie, the newest members too. hello Susan I pray for yu that relief comes soon for yu. I don't think this thing ever goes away. I have flares now and then I guess I will just have to live with it, House might be sold UGH!!!!! not a happy time for me as I love my house, I just need to suck it up and move on. I will find out next week if its sold, in the mean time I spent Mothers day in the ICU unit in University Hospital Madison. my sister needs a liver transplant!!! Life can sure throw yu some sh... She has been on a ventilator for almost a week now. Sometimes I wonder what life has in store for me. I seem to have to help all my family members. I wouldn't have it any other way, I look at my issues minor compared to theirs. hoping she will be strong enough for the surgery but first thing she needs a donor, Hate to even think of it. To the young lady darn I forgot her name, I take Elavil and have no side affects from it wha so ever, I plan on staying on this forever, it helps me sleep and I always feel rested the next day, I do believe these type sof drugs do help with the pain. Hanna much love to you!!!

Jessica	MA	United States	2012-05-17 04:24:31
Hi Anne Marie and everyone, I believe I'm the young one from Boston you mention and just wanted to say I always read this site, but I don't post a lot. I am seeing my doctor at Dr. Stewart's office in June and not May like I had originally thought. Nothing has changed for me since the last time I have seen her in March, which is why I have not updated in awhile but I will keep you posted.

ANNEMARIE	NJ	usa	2012-05-16 18:43:55
Dear ELLEN, I am so sorry, I just was looking for a post from a young girl who was going to Boston to see Dr. Stewart and I just noticed you asked me to give you a description of my situation and what I have come to use. In 2008 I started with a terrible burning in the vulva after my nightly bath. I was horrified, I went on fire. I tried all types of creams and since I worked in office work atif community hospital I began to ask everyone they had ever experienced this. One lady out of over 200 including nurses had a relative that had this. I did research because the doctors didnt really know what I had. I also got some info from another web site and then went to my dermatologist and he diag. me with Lichens Scelrosus and I also was informed by research etc that the vulvodynia that I have is not the diag but the remains of what the lichens did to my nerve endings. I got the LS under control with clobetasol 2-3 x a day for 4 months and tapered down to now once a week...My derm told me the LS was gone. HOWEVER< then I was left with nerve pain in the vulva and felt like my skin was crawling and also pain in the inner thigh and groin. I did more research and discoverd i needed estrace hormone creme and neurotin. I have experienced some good results but now I have buttocks/anus pain when sitting also...I went to a female physical therapist last year and got some internal and external massages and exercises that have helped. My husband also helps me with the massages. I did forget to tell you that I use tramadol for when the pain usually in the buttocks wont give up and I use a low dose of zanax along with neurotin 3/x a day. In comparison to 2008 I am in a better place but not pain free. I hope the memeber that went to Boston gets back to us to let us know what the autor of the V books facility has told her. I hope I didnt get too confusing....Hi to Sally and Charlene,,,GOD BLESS all

susan	florida	us	2012-05-16 17:27:56
hi girls thanks for asking about me and I do always care how all of uyou are doing and praying everyone is feeling as best as we can do and feel. I always said from day one what ever works for someone stay with it. we just hope that we can do the best we can for each one of us. it is touch but we must pray for the best we can do and keep our chin up and do our best. I will post again and hope everyone is trying the best they can. Take care and I always think of all of you gals doing the best we can. Wish you only the best and be strong. love susan

Sally	NY	USA	2012-05-16 12:30:21
Dear Ellen and members, I have been having a really hard time of late w/ my vulvodynia problems. Now it feels like a knife cut me open and just keeps cutting. I'm taking my meds and was seeing better days, but the last few have been HELL. I don't know what else to say. This crap is taking over my existence....again. I am reading the posts and praying for all of us.

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