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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susie	orlando, fl	usa	2012-01-27 17:37:59
Hi Sally - the PFT I do is done with two probes, one is inserted into the vagina and one into rectum and then they click the computer/machine and it sends electrodes/waves inside your vagina to work and relax the Pelvic floor Muscles, it feels like a tapping against the vagina walls. I do no do Kegels I do what he causes Kegel Like excerises A Kegel you pull in your vagina and hold it for a few seconds then release, my Dr has me pull in and immediately release the therapist calls them quick flicks because you do 15 in a row and quick, pull in and quickly release it, I hope that makes sense. You want to relax the pelvic floor not make it tight and painful. These quick flicks help relax the Pelvic floor. If you have any questions, please feel free to write back and I will answer. Have a great evening.

Ellen	Iowa	USA	2012-01-27 17:08:04
SUSIE, Yes, we have all come a long way since first posting but I had already discovered what caused my v when I found this site but wanted to tell my story and stay on to help others. So what exactly was the cause of your case of vulvodynia?. Tight muscles in the vagina? Hard to imagine that that would cause severe burning but I guess it can if it did that to you. So many causes and types of vulvodynia. It is so overwhelming! I have urintary incontinence (not bad enough for Depends yet) and I think I should be doing Kegels to tighten the muscles, perhaps avoiding the use of Depends later. I have tried several times to start doing them regularly but always fall off the wagon. But I know I wouldn't if I had your type of vulvodynia. I would be doing them everyday - anything to avoid that severe burning!! On Thursday, after being off hormones for three days, the burning mouth pain did break through and my tongue burned some. Drank a lot of cold water yesterday. But today is better after taking the 1/2 dose last night. I just hope I will stay okay on this lowered dose. Always nice to hear from you, SUSAN. I'm so sorry you have do many other health problems on top of vulvodynia. I do pray you will have better days. I hope everyone has a good week-end. Love, Ellen

Sally	NY	USA	2012-01-27 14:26:23
Susie..quick question...the physical therapy you did...was any of it internal? I have done therapy with biofeedback and it did wonders. I never got to the point that I could have comfortable intercourse, but I was GOOD. The therapist that helped me quit and moved away. When I had a relapse, I went back to the same clinic , but had a different therapist. It didn't work quite as well. I can not do kegels..sends me into pain within 24 hrs. Could you just briefly describe the therapy you did with your therapist? Thanks.

Susie	Orlando, FL	USA	2012-01-26 11:46:45
Hi Ladies - I hope everyone is having a great day and finding some sort of relief. To all the new ladies on this site, know that we have all been there and eventually you will find a Doctor or method that will help you. Hi Theresa and Ellen, always great to see your posts. Boy we have all come so far since we first met on here. I was a mess three years ago and like Ellen was in so much pain and burning that I contemplated taking my own life, because if this is how my life was going to be then I wanted it to end, but I thank God everyday a girlfriend of mine referred me to a wonderful Doctor who started me doing Pelvic floor Therapy with Biofeedback and after 8 sessions I had my life back, no pain, no burning, I could be intimate again with my husband, wear pants and enjoy things that I couldn't for so long. My Doctor also has me do Kegel like exercises which used to be 150 per day 15 sets of 10 but now since I'm doing much better I just do 4 sets of 15 for a total of 60 a day. I only go to the Therapy every six months, he said I don't have to go anymore but I'm afraid to totally give it up because I know a flair up can happen at any given time. I pray everyone on this site will find relief immediately and live without pain on a daily basis. Have a great weekend everyone. Susie

Ellen	Iowa	USA	2012-01-26 08:19:07
CHARLEEN, yes, I agree with you. I would rather risk getting breast cancer than deal with the burning of vulvodynia. And, in my case, it was VERY SEVERE!! I didn't even want to live anymore. I remember praying every night that the Lord would take me home to be with Him. Without my bioidentical hormone cream, I would have absolutely no life at all, and I am so blessed that the Lord was wth me through all of it, and that He finally led me to the answer. When I called my Barb, my compounding pharmacist, she said she told Nicolle that you just can't go by numbers but you have to go by symptom relief also. Nicolle, thankfully, saw me when my vulviodynia was at its very worse so she knows how sick I got. At one point, she thought I was having a psychotic breakdown and almost put me into the hospital. Good thing she didn't as it would have been the psych ward! I wasn't psychotic but I was so depressed and upset and in so much pain without any answers that it could look like that to others who don't what vulvodynia can do to a woman. I was so tired of suffering for so long (a year and a half at that point) without any end in sight. By the way, Nicolle didn't change my script at all. I still have enough to take 1 ml each day for a month and not run out. Also, Nicolle has a Plan B if this doesn't work out. In the end, if I do not tolerate any changes, I think she will allow me to have the dosage and percentages that I need. She just doesn't want to see me at risk for breast cancer. But I definitely will NOT blame her if I develop it. I could be on a lower dosage and still develop it. It is not entirely without risk in any amount but still not as risky as the snynthetics. We had prayer meeting last night, and I had so much on my mind that I plum forget to give myself my Forteo injection and put on the hormone cream. This happens every once in a while. So tonight will be the first time I will used the lower dosage. Love, Ellen

Charleen	Alberta	Canada	2012-01-26 05:31:41
Hi everyone going home in a few days,Ellen i have my appt with my doc on mon so i should have the biodentical cream by tuesday,I sure hope you are going to be ok with the half dose gee what if your burning comes back will she change your script back again I know you can put the 1ml on but then you will run out before your script is finished,How does any of the docs know how much estrogen we need any way as we are all so very different isnt it all just guessing!!!!!! I would rather risk breast cancer than this horrible burning any day,I will pray for you my friend that the burning will not return.Iam soooo looking forward to trying this stuff.Susan hang in there,it is possible for your nerve endings to die and the pain would be gone for ever,this is what happened to my grama she had really bad bladder and kidney infections and couldnt feel a thing because her nerve endings were dead which was a blessing for her.happy days everyone.

susan	florida	us	2012-01-25 18:20:13
Hi everyone. glad to see that some of you are posting. I am so sorry that I can't post like I used to like every day but I can't take all my pain all over my great body. hate to complaim so much but I have so many things wrong that I think I am going nutty. I just found out that I need a new knee put in but the 3 doctors decided that I am not good for that severe surgery so I am not going to have it. who even knows if it would work. these doctors as I alwats said they are just normal people trying to help us and people put too much stock in them and they just don't know that much. they do not have a cure for most things so we must except what we have and keep going on and doing the best we can for ourselves and every one else. please keep up with this page as this is what got me through all these years. love you hanna. I hope eeryone is trying the best they can and keep the faith and will try to post more but sitting is very bad.I did get a old lap top but I don't have high speed so it can't work for me lying down so I will give it back to my neighbor friend. it is like 10 years old but it won't do the trick. oh well take care and my best to all and lots of hope love susan

Ellen	Iowa	USA	2012-01-25 13:33:25
Here is the scoop on Estrace. Yes, it is a natural hormone but it is estradiol only. Estriol is the most important estrogen and is the estrogen that makes up most of the estrogen in our bodies before menopause. And it is the only one that helps my vulvodynia and it is ONLY available in compounded bioidentical hormones in the USA and Canada. Doesn't seem fair but that is the way it is. In 2007, when my vulvodnia was at its very worse, one of the pharmacuetical companies was trying to get the government to ban compounding pharmacists from the making of bioidentical hormones and it was all because of the almight dollar. They didn't care one bit if women had to suffer, just so that got all the money for HRT. When I used to work for a pharmacist who compounds, he was able to make up the same formula of saline that is used in Neti-pots for sinus allergies today. It worked as a nasal rinse using a WaterPik. I still have that WaterPik but the government has since banned him from compounding that along with some other things he used to compound. And they call this a free country?? Tonight I will start applying the 1/2 dose of the estrogen and progesterone cream. I do pray my symptoms don't return but we will see.....Nicolle did leave my RX the same so I have enough to start applying 1 ml again if I start should start burning. Of course there is no guarantee that I won't develop breast cancer so that is why I am so willing to give it a try. At least breast cancer doesn't run in my family but one never knows. Love to all and I hope you all are having a good with less pain. Ellen

Ellen	Iowa	USA	2012-01-24 12:29:21
THRESA, yes, vagifem is a synthetic. I have heard it said that Estrace is a natural estrogen by doctors who do not prescribe bioidenticals. That is a good question for my compounding pharmacist. I have another question for her so I will ask her about the Estrace when I call her. LADIES, my appointment with my NP was cancelled yesterday due to the weather so I went to see her today. What she is going to try, after talking with my compounding pharmacist, is cutting my daily dose down from 1 ml to .5 ml. The strength will be the same. My estrogen level is higher than it ever has been and I was over-the-top on the progesterone. Was 5227 when its supposed to be around 500! So we shall see.....CHARLEEN, the way my results are turning out, I am thinking it might be dangerous if you doctor does NOT do the saliva test or blood test. I hope you all are having a good day. Love, Ellen

Thresa	ILL	USA	2012-01-24 05:03:53
Hi everyone!! First of alll I am totally humbled Ellen, You are so sweet. Hi Charlene, hope you are getting better, It seems you are lil by little, Me too, I still have some flares but Live is great, Jane!!! ty soooo much. I know I need to start using the vibrator, I just feel awkward, Maybe that would help me not to be so paranoid of sex. Like everyone here I surely want no more pain. Ellen I really should talk to my Obgyn about the Bio denticals, The vagifem has helped me. and of course the Estrace cream too, I have my yearly check up in early feb, I am thinking she is going to want to do a hysterectomy since My BC was due to high levels of Estrogen, but I am not a fan. I am taking Progesterone pills every 3 months just to make sure my Uterus isn't absorbing too much Estrogen, All I know is I NEED ESTROGEN, I will not go through that hell again. I can at least touch Myself now and Not go into Excruciating pain, WE shall see. Some day I hope to use it use it and abuse it again hahahaha! I guess Vagifem is a synthetic Right Ellen, I guess I could Look. Other wise I am doing fantastic and working out and enjoying life. I sure wish we could all meet, wouldn't that be wonderful. Hanna Like everyone else is saying, With out this page and reading others posts i don't know what I would of done when I was in severe pain..IT distracted me from the pain, because I was so determined to help myself and try to help others. You have done a spectacular job in helping all of us ladies. You will always be the Queen Hanna Bananna LOL and Lady Ellen my Fb buddy, Charlene I can just feel your emotions when you post.I sense some calmness and that makes me sooo happy. Jane keep trucking it DOES get better, Susan damn I am gonna tell God tonight its time for you to find that Place too, No Pain, Love you all!!

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