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, it may not be listed by Google when you are ready to find us again
Vulvodynia

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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stephanie	New Jersey	USA	2010-02-08 11:57:49
Hello All. Sorry I have not been in touch in awhile. I started PT about 3 weeks ago and I definitely notice less burning after the session is over. My PT sees Vulvodynia patients on a daily basis. She is absolutely amazing. Question. I am still on a low oxalate diet. I sometimes notice if I have high oxalate foods I do flare up; however, I am not sure as to what extend. Possibly its really just how I am sitting that day or what other activities I am doing and not so much the food? I was interested to see if food was a source of pain for anyone else? I dont find the calcium citrate does much?

Trishann	Michigan	USA	2010-02-08 09:03:18
TO LAURA in MI: Hi, You asked about antidepressants: I'm taking Gabapentin, which is generic for Neurontin. It's an antidepressant but it also has something in it for nerve pain. It has done wonders for me, brought the pain down to a 2, something manageable. I haven't too many side effects from it, but it will effect everyone different. I would suggest talking to your doctor about what would be best for you. However, educate yourself first...there's a great website for getting information on prescription drugs, and not just information that the manufacturer wants you to know, but people's input on how it affects them. If you use google, put in CrazyMeds and it will come up. If you look up Neurontin, it will give you the other drug names in that family. But then go to your doctor armed with this information so you can ask the questions you want to. :)

Anne	OH	USA	2010-02-08 07:15:39
ELLEN: The supplement I take is a High Potency Probiotic called Florajen3, my compound Pharmacist recommended it. Their website is www.florajen.com. I keep it in the fridge as directed. Now I think of it I did use the over the counter Monistat before the prescription the GYNO gave me because the Monistat didn't help so either one could be the culprit but for precautionary measures I will never use either one again only oral. My flare ups were so severe I just sobbed with pain so I am probably over cautious I will do anything to prevent it. I was even nervous about getting my PAP smear because I thought it may lead to a problem. My advise to the new sufferers is try one solution at a time I jumped right in and did everything I could think of and now I don't know what is effective I could be wasting my money on the supplements but am not prepared to suffer the consequences of stopping any just in case. Also I cut wheat, and most carbs out of my diet because that was another recommendation....have lost 5 lbs as a result so I'm not complaining :-) Have a good week everyone!

susan	florida	us	2010-02-07 17:32:13
Hi I hope everyone is having a better day. Wish I could say that for myself. I also have a rash to me but I am going to the doctor Tuesday so I will find out then. Hope all of you don't take this wrong but I think Hanna's idea of a picture is just great. It really helps to put a face with a post. Gives a closer feeling and hope all of you will send one. Have a good night and hope the week starts off to be a decent one. Take care Susan

Ellen	Iowa	USA	2010-02-07 13:06:08
ANNE, so the OTC ovule suppositories for yeast infection caused your first flare of vulvodynia? Wow! I'm surprised because they don't bother me at all. It was Metrogel and Monistat cream that caused my first flare. Just goes to show you how different everyone is. I think you can take clindamyacin (which is what Cleocin ovules are) in a pill form also. What supplement do you take to control the yeast? I had a lot of heavy gushing when I went through menopause, too. I wore those overnight pads all the time but it still managed to go through everything. Don't know how I got through it but I did somehow. Had my last period at age 50 also. Ellen

Anne	OH	USA	2010-02-07 10:50:01
ELLEN: I am considered to be going through menopause but I still feel like I am on a cycle, I stopped having periods at 50 because I had a uterinary ablation to stop the heavy bleeding I was having. I am on bio-identical hormones which I know have helped but I still get monthly migraines and mood swing. I want to also welcome JULES and to re-iterate what others have said about the vaginal suppositories to treat yeast, that is what I feel caused my first flare up, my second was right after a UTI so I now take a supplement for urinary tract health, a supplement to control vaginal yeast together with the bio-identical hormones, I haven't had a flare up since I started this regiment. I still have sensitivity and know that it is still there ready to rear it's ugly head at any moment but it's under control.

susan	florida	us	2010-02-06 17:57:41
Hi Girls. After reading the posts I can only tell you my story. I have this awful thing for I think 8 years by now, I tried every kind of cream that only made it worse. Look back at the old posts and you will find the every day things that you should do. Loosr pants never use toilet paper soaps only dove bar with the green line on box wash the urine away with a soft sqeeze bottle and buy a ice mat etc. I wish I could say that I am even a little better but I am not. One good thing is I know all about this problem as in the begining I did not know a thing when it was new to me. I just started PFT and I hope the PT can help me but as she said that she can't cure me of course. It is to go for a long time but time will tell and I hope to have some relief from it. This page is the only way to go as any girl you know and how close you may be to her or them they just don't understand. Not one of my friends get the idea which I am so happy for them that they are well with their volvo and vestibulitis. I also have IC and fibromyalgia but these things are like sisters to each other. I have other medical problems but that does not have anything to do with this. Thank heaven for HAnna and this page. Please post as often as you can and ask any questions you wish and you will find support here and not anywhere else. Please never give up and consider this page a blessing and make beleive this is like your homework if you choose. I can't stress enough how much everyone needs this page aand for sure you new girls will be much better if you keep up with this page. Take care and hope to hear from all of you. Fondly Susan from Coral Springs Florida for the new girls. Again go back and you will find a world of knowledge. My best always Susan

Ellen	Iowa	USA	2010-02-06 08:37:27
JULES, I see I goofed up when I was rewording something in my post. Where I wrote "Instead, ask your doctor to give you the oral pill (Diflucan) for the yeast infection" it was supposed to read after that "and have him give you a prescription for Cleocin Vaginal Ovules for the bacterial vaginosis." Sorry about the omission. Ellen

Laura	MI	USA	2010-02-06 06:20:35
I have not had a good week I have been flaring for over two weeks now. It usually don't last this long but I so emotionally unstable and I have two little ones under 3 three that depend on me 100%. I have tried most of the drugs, creams, compounds, for this disease and have been in PT for 5 months now which has helped me until now, but only have one more appointment and its like in few weeks. She says she doesn't think she can help me much more. So I am thinking the next step is antidepressent? Does anyone have any ideas of some good ones with less side effects? Thanks!

Ellen	Iowa	USA	2010-02-06 06:20:31
Welcome JULES! I hope you will find Hanna's page to be a source of real comfort and information for you as it has for all of us. In regard to the treatments you have received for Bacterial vaginosis and yeast infection (which you may not even have) I have this advice: Do not use the cream or gel forms of medication that you put on the vulvar or into the vagina. There are chemicals in them (such as propylene glycol, parabens and others) that have caused many of us to burn even more. I believe it is an allergic reaction. When my sister quit using these meds and resolved not to put anything on or up there, her vulvodynia cleared up. She was in her late twenties when she had her first bout with it in the early eighties. Instead, ask your doctor to give you the oral pill (Diflucan) for the yeast infection Yes, the ovules are put into the vagina but they DON'T have all those chemicals in them and, therefore, they have not bothered me. I can also use the Monistat Ovules that are sold over the counter for yeast infection but DO NOT use the cream that comes in the package with it. If you are menopause age, you may need estrogen. But be careful there, too. Synthetic forms such as Premarin (which is applied to the vulvar and into the vagina) have those chemicals in them, also. Premarin made me burn something awful. I use a bioidentical estrogen/progesterone cream that is applied to the inside of my thighs. And as HANNA said, reading older posts will he helpful. Also read Hanna's story (bless her heart - she is the one who started this site!) And MY original story was posted on Sept. 27th, 2009, and I have been reading and posting ever since. This site is a Godsend! Ellen

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