Three years ago I was experiencing tremendous pain and kept it a secret from everyone. I remember feeling so ashamed and embarrassed and frustrated. I felt alone and desperately wanted information. Never would I have believed I would end up sharing my story to friends, the blogging community, and now national television. I feel blessed to be part of a growing movement to finally bring attention to chronic pelvic pain.
I want to thank all who were involved in last night's episode. I'm very happy with the way it was edited and presented, especially for such a limited time block. I would love to hear what you all think. Things are pretty overwhelming now- but I will try and answer emails as quickly as I can. I'm so thankful for all the encouraging and supportive words many of you have already sent me.
A quick medical update: I had more injections early this morning. I am happy to report that vaginal pain is pretty much obsolete. All these months of injections have done wonders. There's still a bit of pain at 6:00, but I think with a few more rounds, it too will disappear. My pain is still heavily concentrated right under my sit bones. We are trying injections superficially, and hoping to see some improvement now. My guess is that I won't feel relief until after the pelvic floor reconstruction surgery in April to repair my two tears. It seems that so much of my pain has been caused by these orthopedic issues.
A quick life update: For those of you that do not know, I have decided to go back to school for my doctorate in physical therapy, with hopes to concentrate on manual and pelvic floor therapy. I have been thinking about it for a long time, and nothing has ever felt so right. It may not have been what I studied in undergrad, but I feel having a liberal arts education will be extremely useful. I am getting straight to work- I need to take all my science prerequisites, as well as observe physical therapy in two different settings. My classes start in the spring, and I hope to apply in the summer for 2012 admission. I cannot even express my excitement to have found my life calling and to be able to use my experience to help others. Overall, life seems to be turning around.
Keep fighting,
Tamra
17 comments:
I'm really glad you are happy with the editing...I know you said you were concerned about how they would choose to portray you.
I am TV-less so I'll have to figure out where else I can find the episode.
xo
Thank you woman! I forgot to include the link: you can watch it on their homepage http://www.mtv.com/shows/truelife/series.jhtml
You are a hero T!!! Thank you for all that you're doing to bring awareness to PFD! xo
I have been living with Interstitial Cystitis and PFD since 2007. I can't imagine the courage it took to have your life on film like that. Thanks so much for your example, keep on fighting girl!
Karen
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
(I apologize if this ended up posting twice, my browser gave me an error the first time)
THE SHOW WAS AWESOME!
I have finals this week and honestly I was just checking the internet every 5 minutes until mtv posted it.
I am so excited vulvar pain issues are finally getting attention. I've been dealing with pain now for a year (happy anniversary!) It's such a mental and physical battle everyday. I love that you are hoping to become a physical therapist!!! I am currently an undergrad, in my junior year, and as crappy as this whole experience has been, it's done the same thing for me- directed my career path. After seeing the lack of good medical professionals who treat vulvar pain, I want to go to med school and eventually treat vulvodynia. Hopefully in 20 something years when you are I are treating people, there will be a lot more understanding of vulvodynia. let's hope.
Good luck with future school!
Cristina
Unfortunately I can't view the episode in Canada, but I will keep checking to see if they post it on the MTV Canada webpage.
Regardless, I think you are incredibly brave to share your story. Some of my close friends and family know of my situation with VV, but it's certainly not something I've felt comfortable opening up about outside of those few people.
As a side note: I used to experience a great deal of pain under my sit bones. The only thing that ever helped me was yoga.
I hope you continue finding relief!
JS
Just wanted to thank you for being so brave & putting a face on the pain so many suffer with.
I have IC, VVS, PFD, IBS & Endo, and am so glad that some of my friends were able to watch that & see what it is like to wade through that much pain on a daily basis!!
Thank you so much!! I really hope the PT works for you. Just started it myself, and have seen some small improvements! ~Naomi
Tamra, was your hip issue a labral tear? If so, how did it happen. If this was blogged about could you post the link ?
thanks,
Cora
As the husband of a woman afflicted with vulvodynia I applaud Tamra's positive, pro-active, can-do approach to her condition, especially if the "doing" means not doing in order to focus on maintaining her physical and emotional health.
I've just become aware of the condition about 5 years ago when I was writing to my present wife.
She has been afflicted with it since her late teens (she's now 55). She had it operated on, which was to cut out the offending hyper-sensitive patch of interior vulvar skin, and badly infected Bartholin's glands, which worked quite well for about 10 years, before the nerve-ending overgrowth returned enough to cause pain. She was blessed because the same operation performed on another friend only worked for 3 years.
According to UCLA vulvar pain specialist Andrea Rapkin, now the overgrowth is so widespread, and her vulvar skin so thin because of her age the operation cannot be repeated.
Physical therapy was suggested but we can't drive 3 hrs one-way down to UCLA to do it (I don't have the energy for the drive, plus we can't afford the gas anyway.) We tried nerve-block injections above the sacrum twice, that were supposed to last for 3 months, but only got 24 hrs of incontinence instead, so that was a flop.
We were able to enjoy some intimacy before it became too chronic, but now we've just learned to live with ice-packs wherever we go, and in bed. Fortunately I'm nearly 60 and my hormones aren't what they used to be, or I can masturbate and then can be content with just brushing her hair before sleep.
The only time she's pain free is when she's asleep, knocked out cold for 12 hrs every day by her 5 psych meds for her mental illness (unipolar depression, schizo-effective disorder, OCD and suicide ideation). She has some pain meds for her spinal scoliosis but they don't touch the vulvodynia.
The scoliosis knocks her hips out of alignment so she can neither walk, nor stand, nor sit for more than a few minutes because of the pain, unless she sits with her feet up under her, leaning to one side.
She's had a rough life. Her parents and two ex's have all abandoned her in mental institutions so she lugs some heavy emotional baggage there too.
My role is of course far more caregiver than husband (but all husbands should be caregivers too), but she's precisely all that I asked the Lord for in a second wife.
After a decade of searching through tens of thousands of women's profiles in Internet single's sites, magazines and meetings, she was the first one who was a sweet, shy and sincere Christian, NOT a TV addict, and had the killer smile I was looking for!
I couldn't pass her up then, nor could I give her up now. She is the little flower, the little ewe lamb God has given me to care for, and I take some pride in the responsibility, within my limited abilities.
We have had to find our own way through life with our various handicaps, as we all must do, but we look forward to the Restitution of all things (including our deformed bodies and minds) that Jesus promised us in the future.
Each day is a new day by itself, and by the grace of God we will have the nerve, energy and stamina to get through that one day and return to our beds in peace that night.
Just maintaining through every day is a mighty victory the magnitude of which only in the hereafter will be fully revealed.
I really appreciate Tamra's courage, grace, perseverance and humility as she encourages all similar sufferers to persevere.
God Bless Tamra!
Patrick,
Prophecyhelps101.com
I've spent a few hours reading back and forth among all the posts here.
As the husband of a woman now 55 afflicted with this terrible chronic condition, among others, I applaud the courage, openness and humility Tamra shows in her battle with her condition.
After much abuse from many Drs (even top-rated Andrea Rapkin at UCLA) we've just settled down to continual ice packs everywhere we go, day and night. Each of us has to find our own path with our disabilities, with God's help.
Just maintaining through the day is a mighty victory the magnitude of which will never be fully known until the hereafter.
God Bless Tamra!
Patrick
prophecyhelps101.com
Oh! The program told me my first post was too long, so I remade a short one. Now they're both posted. Oh Well! PR :-)
I was diagnosed with interstitial cystitis when i was about 18; im 23 now and within the last year i was also diagnosed with vulvar vestibulitis. I felt really alone after finding out i had vulvar vestibulitis because i thought i did something to cause this. My boyfriend was very unsupportive and would get angry and ignore me when we couldnt have sex. I found some info on the internet about this condition but i happened to be watching tv last night and came across Mtv true lifes "i cant have sex" episode and it really was nice to not feel so alone in my diagnosis.
As a man that's benefited greatly from this type of physical therapy, I found your blog when I Googled my therapist, I must tell you how inspiring your posts have been and how happy I am to hear you're plans to become a therapist.
I wish you the best of luck and success.
JAH
I was very angry about this documentary. It was very misleading and didn't mention ic once. Made it sound like going to a shrink would help. I have had 62 surgeries and more hospital stays to count. I think this should be pulled off the air. Broken hip, change in boyfriend and no pain, talking to psychologist and no pain. Come on. I had people watch and this documentary was the worst ever. It should be pulled off air. Being an ic patient forever, u have no idea what u are talking about.
Tamra - I saw the episode and thought you were so amazing and courageous!! I've been off my blog for a while fighting a variety of other flares which unfortunately undid a lot of the pelvic therapy and relaxation I previously went through but I know it takes work and I am part of the solution.
I have to say reading that your injections have been working - I couldn't be more thrilled...having been through the trenches and reading and talking to friends going through such extreme pain that's so hard to talk about let alone deal with and not "back pain" (not to take anything away from any other chronic pain sufferers), but I couldn't be more happy to finally see you are getting relief after following you for so long. You originally inspired me to start writing about what I was going through and I think everyone feels the same way I do when we read about someone getting relief...there's hope. Thank you so much for being so courageous...I couldn't handle it, but I'm glad you stood up for everyone. Thank you soo much and bless you and good luck with EVERYTHING! You deserve every minute of relief that comes your way :)
I am overwhelmed by all your warm words- thank you all for making me a stronger person and encouraging me to keep fighting.
Post a Comment