The Yahoo Group Chronic Severe Endometriosis was established in October 2000, during my second surgery post-Hysterectomy. At the time, now 11 years ago, the number of women undergoing post-Hysterectomy surgery for the purpose of treating Endometriosis was extraordinarily small – less than 3% of the total OnLine Population within the Endometriosis Research Center’s Community and other smaller Endometriosis Communities on the Internet.
From 1998 through 2000, I navigated the medical treatments and research for Endometriosis using the Endometriosis Research Center. There was nothing special about the ERC, other than they were the only professional, non-Profit organization who answered my inquiries, spoke with me on the phone and provided reams of documentation on the latest Endometriosis Information available at the time.
Too many times, I posted a detailed topic, generally relating to Hysterectomy, Bowel Endo, or Ovarian/Endometrial Cancer, and within 2 days my email inbox is flooded with emails from young women, recently diagnosed with Stage I or II Endometriosis, asking all sorts of questions, and generally scared out of their minds.
These young women and girls will never have the Endo experience that I or other Chronic sufferers have had. Not only are their cases mild, they have been diagnosed early, and have a far better chance of seeing recovery than most of the veterans. It became difficult researching my own disease while “backtracking” to the more milder forms of the diease and the short term treatments available for Endometriosis. Stage IV Endometriosis is the most severe stage of endometriosis. Women with stage IV endometriosis will have many superficial and deep implants as well as large adhesions. The treatment protocols for Stage IV Endometriosis are some of the most intense and in most cases, result in Hysterectomy for pain management, which may or may not provide long term relief and better quality of life post-Endometriosis.
I had the bright idea that by narrowing the topic and the audience, the veterans of ERC (and other lists) could gather in one place to discuss the hard topics of Stage IV Endometriosis without scaring or upsetting women who were diagnosed with Stage I or II Endometriosis. My vision was for a Group which would provide a platform to ask questions – the difficult questions – concerning surgery, hysterectomy and the long term side affects of High Dose GnRH Antagonists (Danazol & Lupron most significantly), compare notes, vent frustrations, cry, be terrified and panicked, and know that we are speaking directly to other women who KNOW, who have experienced the PAIN, and the FRUSTRATION, and especially the LOSS, and then the BETRAYAL when the disease returns … yet again.
The target audience of the Chronic Severe Endometriosis Yahoo Group is Women age 30+
- who have been dealing with the effects of Endometriosis Stage 3 and 4,
- who have undergone multiple surgeries in the pursuit of relief from the disease, including Hysterectomy and post-Hysterectomy Re-occurrence of Endometrosis symptoms (also known as Ovarian Remnant Disease).
- who have undergone one or more GnRH Antagonist Treatments either pre or post-Hysterectomy
The discussions within the group focus on, but are not limited to, the unique challenges Tecurring/Genetic/Severe Endometriosis pose to women, such as
- “Treatments for Severe Chronic Endo” – including discussions on Danozol, Lupron, Depot Provera and Surgical Options
- “Endo & Hysterectomy” – It’s not always the right treatment
- “Abdominal Surgery after Hysterectomy” – Undergoing surgery post-Hysterectomy
- “Endometriosis & the Connection to Cancer” – Discussions which explore the lethal aspects of Endometriosis as it progresses into Ovarian, Uterine, Cervial and Colon Cancers
- “Endometriosis & Mortality” – Chronic Severe Endo Sufferers DO have a tendency to higher mortality rates and higher incidences of cancer.
One of the resources promoted extensively on the list is the Endometriosis Research Center (ERC).
The ERC helped me in so many ways with my Endometriosis Battle. I do my best to promote them as much as I can. Heather and Michelle, the two primary ERC Board Members and active participants with the ERC, are two dedicated Endo women and their talent in Endo research is beyond expression! I urge all Endo sufferers to utilize what the ERC has to offer, and to promote the ERC, through support, both on the internet and in the community.