Vulvodynia & Vestibulitis
Helping Each Other
A Vulvodynia and Vestibulitis Support Group
Welcome
to OUR page ladies!
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.
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| 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 |
Posts 1 to 10 of 2699
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| Diane | CT | USA | 2010-03-10 08:07:26 |
STEPHANIE - all I have seen so far is my OBGYN who told me to use OTC 1% Lidocaine. I have not tried that yet as I am leary of putting any creams on after the pain I had with the Calendula. Other than that, she had no recommendations. She wants me to see a neurologist and is trying to get me an appt to try to determine where the nerve pain is coming from. I am on a waiting list to see a Dr. Elizabeth Stuart in Burlington MA, but that is anywhere from 2-8 weeks. I am also having an aching pain between my left labia and thigh that is like a toothache. How often should I be using the ice packs? and what other self medicines do you use for comfort? I have also been taking advil, I think it may help a little. I appreciate all the encouragement and any other tips. |
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| stephanie | NJ | 2010-03-10 06:44:47 |
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Welcome Diane. I came across this site a few weeks back and it has been wonders. There are so many options to feel better. I had tried the Candella cream in the way beginning .. that does nothing. First, always try to wash after you pee .. to stop the burning. There are SO many different avenues .. physical therapy seems to help alot of us as it loosens up the tissue and nerve endings. Definitely keep up with the ice packs. What has your doctor told you to use in terms of creams .. to ease your pain!
Keep that head up ... as we are all finding .. there are ways and we will beat this .. Praying for you ... |
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| Diane | CT | USA | 2010-03-10 06:11:02 |
I'm still new to this and have not started any type of therapy yet....but how does anyone function? I have a 10 year old daughter who misses her mom very much. I feel like I walk around on eggshells cause I'm so aftraid of the pain. All I can do is lie down. Also what clothes do all wear? For me, any type of pants besides sweatpants are painful right now. I wore loose jeans to the doctor yesterday and last night I was in extreme pain, had to use icepacks. I tried calendula cream and it burned terribly. Another night of crying. Please tell me this will get better. |
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| Lori | VA | USA | 2010-03-09 18:45:49 |
Ellen: I saw your post all the way down there about the prayer shawl. I prayer shawl is simply a knitted or crocheted shawl that is made while praying for the person who will be the receiver of the shawl. Alot of ladies in knitting guilds make these for people in nursing homes. Anyways, I found a really simple pattern for a triangular prayer shawl on DebbieMacomber.com website and I started one for myself. It is made with a real soft knobby yarn (Homespun) that is so cozy. This will actually be the first thing I have knitted for myself (I am always making something for someone else) If your not a knitter, youtube has some great demos to teach you how to knit. Ellen I'm glad to hear that prayer helps you...me too. God will get us through this! This too shall pass. |
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| susan | florida | us | 2010-03-09 18:45:41 |
Hi Girls. I did see Dr, Goldstein on 20/20 and I do hope he can help anyone that can afford to go to him and lives near him or can travel to him. If I could afford him I would go to him but I don't live there anymore and could not afford his prices. I just wonder when doctors charge so much is he just in it to become richer than he is or does he care about people who suffer as we do. I do hope all of you who get to him find that he is as great as he thinks he is. I am not having a great day by far so I am not going to sit for long. Take care and I hope everyone is having a decent day and evening and will post again. Fondly Susan |
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| LAURA | MI | USA | 2010-03-09 08:21:37 |
Lori- Thanks for the info on the suppositories I am glad you told me not to try the one for the rectum vaginally. I have a few compound pharmacys I work with for creams but am having a hard time finding the one that makes the vaginally suppositores (found the ones for the rectu. I will keep searching and let you know about any info I fine at the pelvic pain clinic I am going to next month. I will be tring nerve blocks there. |
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| Stephanie | NJ | 2010-03-09 07:57:16 |
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Lori - thank you so much for the uplifting response. I am going to call this week and see about an appointment.
Question - do they do alot of biopsies or blood work during the appointment? Or is it mostly information. ALSO - did you get alot more information from the appointment than anything you had tried before? lastly, did the topic of surgery come up at all.
My physical therapist works closely with Dr. Goldstein, so I am definitely interested in trying a different route.
Thank you again,
Stephanie |
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| Lori | VA | USA | 2010-03-09 06:55:19 |
Laura: The suppositories come in two strengths 5mg or 10mg. The are made by a special compounding pharmacy (most major cities have one on their area) I don't know if you've ever seen a suppository but it looks like a small cone (no bigger than a nickel). The pharmacy places the medication into a fatty acid compound which is very delicate to vaginal tissues (Valium suppositories are also made for the rectum but with a different compound NOT good for the vagina, never use one of those) You simply insert it in like a tampon and thats it. I have no problem with burning or any discomfort, however being that it is Valium it does make me a little sleepy so I take it at bedtime. I have had great pain relief and have taken the suppository for 10 days along with working on stretching these muscles with PT and my home pt regimen. Pill vs. suppository: I was told that you can take Valium in pill for for muscle spasms but only about 10% of the med gets to these pelvic floor muscles and the rest goes to the rest of the body where it really isn't needed. The idea of the suppository is that the medication is more directly absorbed into the pelvic floor muscles since that's where the suppository is being placed. I myself am a nurse and have researched this up and down, there is very little information on the internet, I have also talked with my regular Gyne and he said it was ok to try and Dr. Goldstein and his nurse say they use this all the time for women with tight pelvic floor to help them settle a little while phsical therapy helps us learn to keep them that way. I am in no way an expert on this, but if there is any information that I learn along the way that can help you or anyone else I hope I can do that. Good luck Laura! If you find anything out on your end please share with me too, I'm open to any kind of help or ideas!!! Lori |
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| LAURA | MI | USA | 2010-03-09 05:03:40 |
Lori- I wanted to get some more info on the valium suppoitories are they a pill form or a compound? My PT says my muscles are super tight right now I have been doing PT for 6 months was doing well but them it came back worse then when it started. I was talking to my PT about the suppositories and she thinks you can just use the pill form 5 mg. I asked my GYN about them and he didn't know much about them. I go to a pelvic pain clinic in april hoping they know more about them. They sound interesting! |
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| Lori | VA | USA | 2010-03-09 04:20:47 |
Stephanie: I just saw Dr. Andrew Goldstein a few weeks ago here in Washington, D.C. He is great! He takes alot of time with you explaining your condition and treatment options. My husband went with me and we both were very impressed and I actually felt for the first time in 7 years with living with this pain that I could be healed. I would recommend that you take someone with you to the appointment, some of the information is alot for one person to consume especially if your not feeling well, I was so grateful my husband was able to take off work to come with me. He gives you alot of hope. However, getting an appointment takes awhile. When I first called back in the beginning of Feb. they told me April would be the soonest appt.(I was so upset) but I made the appt. anyways. I however asked them to put me on a waiting list for any cancellations. After alot of prayer I got lucky and got an appt. one week later. I don't know how I could have made it until April. So if you have to wait, keep checking back for cancellations, maybe you'll get lucky too and see him much sooner. And no, they do not take insurance, it is very expensive over 1000.00. But after 7 years of this that money meant nothing to me or my husband and it was well worth it. They do give you an itemized receipt so you can turn it into your insurance yourself for reimbursement. Good luck their website is www.cvvd.org for more information. Lori |
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