Monday, March 10, 2008

If only this weren't an issue!

I'm sharing this with all of you because I'm amazed at how many people do not understand endo. I had 5 years of pain before my diagnosis. Had a second surgery 10 years later (February 2007) and still suffer the pain. I have also had to fight with physicians over medication. I'm lucky to find one that will prescribe vicodin, and allow me enough each month to survive. None of us want to live on pain medication, it's a requirement for normal living. Yet we are treated like addicts. Fitting that the month of my birthday is also awareness month.


Dear Friend,

It is letters such as the one attached from Samantha that break our hearts but also make us realize how important our work is. Please help us reach the physicians who simply do not understand the horrific pain and other problems of endometriosis.

We really need your help to reach doctors, change attitudes, and improve our care.
· How do we help nurses, medical students and physicians in training, as well as physicians already in practice, to better understand the miserable experience of endometriosis and why we greatly need knowledgeable, caring help?
· How do we help them understand that we need to be diagnosed quickly, not 10 years into the disease as our research with the National Institutes of Health showed?
· How do we make them understand that the pain we experience interferes with our lives in major ways and is not in our heads or just something that we have to live with?

You can help with all of this. If each person receiving this talks to only one healthcare provider (start with your own if you haven’t already!), offers brochures to be distributed to other patients, or encourages a doctor to watch our powerful Physician’s DVD, we will have created a tremendous new understanding in just one month. Will you be part of this?

Email, call, or write us if you’d like some brochures and “Ask me about endometriosis” ribbons and if you have other ideas for improving the quality of medical education. For the Physician’s DVD, send us the name and address of your physician, the date of your next appointment, and a statement that you agree to personally put the DVD in the hands of your healthcare provider and will ask them to please view it. And tell us about your experiences. Our Translational Medicine Council is taking shape and appreciates any input or ideas—not just the difficulties we’ve had with medical care but how can we actually change it?

Thank you for lighting a candle to fight the darkness of endo!

Mary Lou Ballweg
President/Executive Director
Endometriosis Association
8585 N. 76th Place
Milwaukee, WI 53223
Phone: (414) 355-2200
Fax: (414) 355-6065
Email: endo@EndometriosisAssn.orgWebsite:

I joined the Endometriosis Association today. I am a 25-year-old child protective services worker. I have had endometriosis symptoms since I started my period… Like most others with the disease, I saw specialist after specialist, had colonoscopies, was told I was a drug-seeker or had depression, and even told I just had gas….

Last year, I asked my mother why five of my aunts have had hysterectomies. (My mother had cancer at the age of 22, had a partial hysterectomy…) My mom said that my aunts all had hysterectomies because of endometriosis…they had all kept the reason quiet until my mother asked them.

I had a laparoscopy to confirm endo in February ’07. Finally, I thought the doctors would prescribe the only medication that works for me—Percocet—for the most painful part of my cycle. And, I thought they wouldn’t question whether I was a drug-seeker because I had a real diagnosis. I was wrong. My doctor was very hesitant to prescribe the narcotics and sent me to a pain management program. I have been doing it for two months, and yet, the pain doctor who prescribes the medicine hasn’t been able to fit me in.

My doctor prescribed Percocet a couple times. I take it only for the most painful times, but when I found myself in a lot of pain and it was gone, I ended up in the emergency room where they refused to give me the medication and offered Vicodin even though it hurts my stomach and makes me feel weird. I left crying. My doctor refused to fill my prescription last week and told me to take ibuprofen and Tylenol.

I was in so much pain, I was taking medication every two hours, until one night, I collapsed on my kitchen floor, sobbing. Then, I vomited all over myself. Knowing that the emergency room would refuse to help me, I had no one to turn to. I live in the U.S.A. and have great health insurance, and yet, there I found myself, in agonizing pain, laying in my own vomit in the kitchen, knowing that there was nothing that anyone was willing to do to help.

I began to write about my pain as a way to express how I feel. I hope to one day publish my poems about endometriosis as another way to help women understand that they are not alone... I’ve read your books so I know how much it can help. Thank you for all that you do.
Samantha, California"


jennifer said...

Gosh TJ, is this something you deal with too? Pain to that degree? I'm SORRY! I have cramping that is severe on the onset but managable with Ibuprofen. THANK GOD! I know it is a tough thing to deal with and sorry that it is such a part of your life. Jennifer

TJ said...

This question isn't easily answered. But, the answer is yes, sometimes I have pain to that degree. Sometimes I feel like a normal person. Sometimes I'll cramp (entire abdomen cramp) for weeks straight, and can hardly eat I'm in so much pain. Sometimes no cramping at all.

My surgery last year definitely didn't fix as much as I'd hoped, but some of the most painful spots are better. And I haven't had another round of 50+ days of pain straight. For that I'm blessed.