Some great news- there is a possibility that women with vulvodynia, etc. might be able to share their stories on a cable series. This would be fantastic for raising awareness and letting other sufferers out there know they are not alone. This is still in the very beginning phases, so they are currently putting together a demo tape, which will only be shown to tv executives. To get this project off the ground, they need women in the NY tri-state area to do a 15 minute interview sharing their story. Again, this is only for the demo- tape, so your interview would NOT be broadcasted or shared with anyone other than the producers. I urge you to please respond and help us raise awareness. It is only a short interview for a demo-tape. Please send me an email or comment if you are interested and I can put you in touch with my producer. If you have any questions or concerns, you can also talk to her about them. Please respond as soon as possible and send this to anyone you might know in the area.
Thanks,
Tamra
11 comments:
Hi T!
How exciting--are you a member of Happy Pelvis? I know there are a few members in your area. If you aren't a member, let me know, and I'll be happy to post this interview request for you!
xo, Bonnie:)
Tamra,
My name is Frank. I'm almost 24 and live in NYC. I saw your True Life and I was amazed by your story. I cannot believe you have trouble finding someone who accepts you for who you are. Anyway, I am currently watching you on MTV and I felt it necessary to try and contact you as I watch this. You seem like an awesome girl and I would like to take you out. I look forward to hearing from you.
Warmest regards,
Frank
fevanac@gmail.com
To Tamra: I am a fellow female sufferer who lives in the suburbs of Philly. I'm 27 & just wanted to see if you would like to email to share stories or have someone going through similar issues to lean on. I have chronic pelvic pain, initially started as endometriosis and then other issues were found over the past 8 years. I also am dealing with the whole dating issue as well as trying to complete my undergrad degree at Temple U through it all. I really can relate to eveything you are going through on MTV's True Life episode. Thank you for sharing your story & best wishes for a happier, healthier life!
My name is Crystal and I am 21 years old. I lost my virginity when I was 19 years old and had a very active sex life with my boyfriend and now I can't have sex without either it hurting too much or can't at all. I told the doctor and she said when she did the exam my muscles closed and she said it was odd but she didnt know what it was. I thank you for your bravery going on the show so I now know what it is. I have a doctors appointment coming up and can now go in with information and empowered. Thank you. :)
Hi Tamra,
I missed the MTV segment, but having done an interview on the local NY news about my vulvar pain about 15 years ago, I understand how brave and how cathartic the experience is. I was diagnosed over 20 years ago, back when almost no one, including doctors had heard of vulvar vestibulitis or vulvodynia. There were very few treatments - everything was trial and error. I started a support group in NYC, and later helped to start up the NVA. I was one of the first patients to try pelvic floor rehabilitation and PT for vulvar pain (I was actually part of a study). What I want to tell you is that you can get better. I, like you, have experienced unbelievable pain. And 20 years later, I am still doing pelvic floor exercises every day. And I am living a normal life, with two kids, a husband, a career, a decent tennis game :-) and jeans with lots of lycra in them. Most of the time, I am completely pain free. I recently had a terrible flair up, the first in years (reaction to a medication), and it was hard not to think the worst (this is here to stay). But I know now that what you focus on gets bigger, so when you focus on the things that make you feel good, they will get bigger and the pain will start to fade. I am feeling better again, and I know that you will too. We know so much more now than we did 20 years ago, and hopefully the medical community will continue to pay attention to and come up with solutions for women who are suffering from chronic pain. You are very brave, and you should know that this experience will shape you and give you a strength that you might not know you had. If you are looking for volunteers t be interviewed, there is a support group there. Contact the National Vulvodynia Association - I'm sure they can put you in touch with someone.
I wish you pain free days! Donna
Tamra,
I've been following your blog for over a year, which inspired me a few months ago to keep my own. (It's http://sorryimallergic.blogspot.com ) I've got endometriosis and vulvar vestibulitis among other things, and I wanted to say thank you for telling your story (which I meant to say before the MTV thing), but it seems appropriate now too.
Thanks for sharing,
Staci
Tamara, I just caught the MTV Episode. I am 22 years old and live in your town, ironically! I have suffered form pelvic floor dysfunction for a little under 2 years. It took me 4 OBGYNs to find it, as they were all telling me I was imagining it & i needed to use more lube, until I finally went to a specialist. I have been feeling 'broken' for a while, and recently, my boyfriend and I have ended our relationship for reasons resulting around not being able to have sex. The devastation of knowing that your relationship is over because of reasons out of your control is so difficult. Yet, the relief that I felt that I wasn't disappointing anyone, and that 'constant reminder' of seeing my boyfriend and me being broken, came over me. I attend physical therapy, but have stopped twice, getting frustrated & sometimes thinking, if I don't acknowledge it, it's not really an issue. I have kept my mind off of it, and I saw the episode a few moments ago, and I realized its not just me, and I need to get back to it. Thanks for your courage to share your story! Please let me know if I can help & I'm willing to share my story. Can't wait to hear back from you! Always, Jess
I, too, am writing because I came upon your story (by chance) while watching TV. I search the airwaves, Google, radio waves, newspapers, etc daily trying to find someone who can help me.
I have seen multiple doctors and had multiple procedures including a total hysterectomy trying to relieve the knives and baseball bat beatings I feel daily between my legs.
I am interested in being interviewed for the show you mentioned with the hopes that I can meet someone, anyone who can help me diagnose my condition and perhaps get some help.
Thank you in advance.
I, too, feel your pain.
S.M.
Tamra,
I CAN HELP YOU... well I can't personally help you. But my doctor can. I have been suffering since the age of 18... and tried everything... including amitryptaline, biofeedback, and physical therapy. But when I was 23 I found a pelvic pain study at UCLA. Dr. John McDonald and Dr. Andrea Rapkin are amazing. Dr. McDonald is a board certified anesthesiologist and gynocologist. The study involved giving long lasting injections that block the nerves that lead to that area which causes us so much F*&% ING pain. The idea is that it blocks the pain long enough to break the cycle of pain. Eventually the pain level went from a 9/10 to a 3/4 and now I'm at a 1/2... sometimes even zero. At first, you may need to have them more frequently. But, now I get booster shots once a year I'm telling you from experience... it works. My life is my own again. I'm no longer broken. I can't completely predict that it will work for you as well as it has for me. But, i know that he has changed my life. I now have a great sex life. I still have flare ups.. and have to go in for booster blocks. But I really believe he can help you as well. I'm going to email him right now and tell him about the show. But the office is the Pacific Pelvic Pain Center in Beverly Hills. 450 Roxbury dr, beverly hills, ca 90210. I hesitate to put my email here. I'm not sure how to email you directly. But I will give you my phone number if you can give me a way to message you directly and you can ask me all about it. I can't believe I may have the opportunity to help someone else (maybe even lots of people) like me have a normal life!!!! Please.. have hope.. because I think this will help you the same way it helped me. - Annie
Thank you all for your comments and sharing your stories. I passed along the interest to my producer, and if she needs more initial people, I will put her in contact with you.
Also thank you Annie for your insights- I'm actually very happy right now with my current treatments. For once, things are working effectively and the health is on the mend.
Warm wishes to all.
hi. my name is jamie grossman and i have vulvodynia/ vulvar vestibulis as well.. i just found your blog this evening and I am from New York.. if they are still looking for people to interview.. id be more then happy to help.. I am leaving the country in two weeks so please let me know :)
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