This Section documents messages from the close of 2007 and 2008. Please continue....
Dear Endo Friends,
I would like to take this opportunity to give thanks to all of you who have participated in so many ways to the success of the Seattle/Eastside Chapter of the Endometriosis Association. This is the close of my first calendar year as president. As I reflect on the past year, I am amazed at the women I have met. There have been some great meetings comprised of smart, successful, incredible women and their support systems. I have met several fabulous husbands and one awesome mom (Karen, I aim to be a mom like you). We have been educated by a physician, Dr. Mosbrucker, with skills to treat those with advanced cases of Endo. All of us share the same goal, to end the pain of endometriosis. I am overwhelmed by the adversity women have and amazed by the incredible ability to work, raise children, participate in school, and be normal human beings despite their Endo.
I look up to all of you!
This Chapter of the EA would not exist without each and every one of you. For that I am sincerely indebted. Looking forward to 2008, I would like each woman to take the “10 Postcard Challenge”. What is this you ask? I have come up with a postcard simply giving women information on our group. I am hoping to distribute these postcards to the many community boards around the greater Seattle region to let women know we exist. How can I help you ask? This is an important and easy way to contribute to others with Endo whether you are an active meeting attendee or someone with far too many obligations to attend monthly meetings but would like to help others. Simply drop an e-mail to goodbyecramps@seattleendo.org and I will send you 10 postcards. All 10 postcards could be brought to your doctor’s office, distributed to various free community boards (think PCC, Starbucks, or Whole Foods), or a combination of both.
Many of you obtain information via the great information highway called the Internet. There are some fabulous, informative websites out there. This is a good place to get your questions answered. Sometimes, that is not quite enough. What is said between the lines? What is the deal exactly? That is where the group attendees, my board members, Jill and Brenda, and I come in. We give Endo a face. We are real people with Endo. The computer can give you some answers, but we can address your real concerns and then talk about the options. We often dissolve into laughter over some of the options and scenarios brought up in the group. It is a great place to talk to others who understand and who have lived it.
The following is a description of a doctor’s appointment (a referral to an “excellent laparoscopic surgeon”) I had recently. If I hadn’t lived through the following scene, I wouldn’t have believed it was true. The point of me sharing this is not about whether or not to have a hysterectomy. This is an individual choice for each woman and the group is supportive of each individual’s choice. The story below is about each woman’s right to have a choice and the importance of educating yourself thoroughly about surgical options. Here goes:
Lots of things didn't feel right. It took 6 weeks to get an appointment, I was on time but they mysteriously didn't have paperwork I had sent weeks ago, the Dr. was running late by 1/2 hour--ended up she didn't see me for an hour and one half. She took copious notes on my history and symptoms, and then explained she had to do a pelvic exam to find out where my left ovary was. I pointed to my left ovary, warned her it would hurt and that I would probably fly off the table....apparently, she needed to see this. After the painful pelvic exam, she left the room, then returned with several flyers on hysterectomy and said "My biggest decision is whether to approach this laparoscopically, by bikini line incision, or vaginally". And I thought this was my decision. I asked her about removing my Endo and she said (you are not going to believe this), "Hysterectomy is the only way to cure endometriosis". I couldn't believe my ears. From all of the readings I have done and support groups I have attended I know hysterectomy doesn't cure Endo, although it can be a good choice for many women. I asked her how my symptoms would go away if the Endo was not removed, my ovaries and uterus were removed, and I started taking hormone replacement. She said my Endo would be suppressed with a suppressor drug I would take in addition to HRT. Unbelievable!! Why not just suppress me now? Finally, she handed me a Rx for an MRI and said she wanted to rule out a slipped disc or hip osteoarthritis. (I already told her I had a PT evaluation and did not have neurological symptoms at the spinal cord level. As a medical professional, I know a simple x-ray can diagnose hip OA effectively and I already have a diagnosis of Endo, so why the expensive MRI)? Moving on, she asked me when I wanted to schedule my hysterectomy. I told her I was overwhelmed and needed to discuss it with my family. Her medical assistant called me within 48 hours to schedule my surgery. I politely declined.
I emphasize the importance of Education and Support! Surgery, whatever procedure you choose, is just that; your decision. Any one treating you in less than a compassionate manner, declining to fully explain the pros and cons of a drug or surgical procedure, or simply making statements that are not true should not have the honor of being your physician.
All in all, the Seattle/Eastside Chapter of the Endometriosis Association has experienced a fabulous year! I couldn’t ask for two better board members, Jill and Brenda! I am looking forward to a wonderful 2008 with the “10 Postcard Challenge” and meeting, supporting, and sharing Endo experiences with you!
Happy Thanksgiving!
Happy Holidays!
Debbie
President
Seattle/Eastside Chapter of the
Endometriosis Association
November 2007
Dear Endo Friends-
I write this at the close of my second full year as President of the Seattle/Eastside Chapter of the Endometriosis Association. This has been a FANTASTIC year with all support group meetings well attended! Many new members found us via our website www.seattleendo.org or the national website www.endometriosisassn.org . Our Board grew from three to five dedicated members. The July potluck picnic was a success complete with significant others, family members, and canine participants! Autumn was initiated with an awesome lecture by two knowledgeable acupuncturists from Acupuncture Northwest. Finally, we ended the 2008 year with a pre-holiday dinner at Pyramid Alehouse.
Last year, I wrote encouraging women to take charge of their medical destiny after I had shared my not-so-positive office visit with an experienced laparoscopic surgeon. I would like to finish my story this year and I will do so by starting at the end.
I jogged 6 miles last week and I have been anti-inflammatory (I cannot tolerate narcotic pain killers) and hormone free for 10 full months! This is the longest stretch of time since I was 14 years old. Did I mention I haven’t had much pain? I can ride my bike? Lift my children? Walk without limping? Better, yet, stand up straight? Sleep comfortably the whole night? Kayak? Am not exhausted daily? Can work, garden…the list continues.
After my “consultation”, I decided to have a real consult with a national expert, finally following my own advice. I sent three pages of pain complaints and apologized for sounding like a train wreck. I received back an impressive, meticulously analyzed summary of why I was probably having the symptoms I was having AND why a hysterectomy was NOT recommended unless I wanted one. Hmmmm. Imagine, finding someone who wasn’t eager to do a hysterectomy! In brief, two expert laparoscopic surgeons, Drs. Cindy Mosbrucker and David Redwine, worked approximately 4 hours to, as dramatic as it sounds, give me my life back. The abridged details follow (skip this section if you tend to faint while reading gory details):
Endometriosis was excised from my pelvic floor, cul-de-sac, bladder, bowel, left ureter, broadband ligaments, and uterus; my mangled left ovary was removed (yes, I consented beforehand); cysts were removed from my right ovary and it was repositioned (my eggs now take a northerly rather than a conventional southerly route); a uterine fibroid and two myomas were excised, and, finally, the section of bowel that insisted on scarring to the left uterine wall was, ummm, encouraged to detach.
Is it a wonder I had pain? I am still humored by the look the recovery room nurse had when she asked for my pain scale and I replied “Zero”. How can this be several hours after abdominal surgery? My post-surgery pain was there, but I seriously had much, more endo pain prior to surgery!
So, women with endo! Once again, I encourage you to take charge of your medical destiny. Find the expert (better yet national expert) who will work in line with your personal philosophies. During the September acupuncture lecture, Stephanie reiterated an important point: There is no “quick fix” for endometriosis either in Eastern or Western medicine. It is a process that takes time, sometimes months or years to attain better control of the multitude of symptoms. It involves lifestyle changes including gentle exercise, dietary alternatives, stress reduction techniques, and often alternative medicines and/or surgery.
We exist as a group to support each other in this journey toward excellent health. I am honored to know each and every one of you amazing women and your significant supporters! For those I haven’t met, 2009 is a good year to participate in the group. The 2008 financial markets have had losses and gains, but women will still have endo and need each other to improve their life quality in 2009!
Happy Holidays!
Debbie
President
Seattle/Eastside Chapter of the Endometriosis Association
November 2008