#2/15 What is Endometriosis?

Endometriosis is a disease that affects one in ten women any time from her first period usually until menopause although some women have been affected after.  There are cases reported of men having endometriosis but it is very rare for men to have this disease. It is believed the disease is formed initially during embryonic life before consciousness has developed.  Most published information describe endometriosis as the tissue that lines the womb called Endometrium back flows out the Fallopian tubes implanting itself outside the uterus and in the abdomen where these cells are not meant to be. Most commonly referred to as retrograde menstruation.  However, recent scientific research continues to question this belief and as patients we await an outcome.  New research suggest that the cells do not back flow from the Fallopian tubes.  That the cells are already there embedded in the tissue and become active.   Estrogen, environmental toxins, and stress being the most likely activation of these cells.

Endometriosis usually attacks the reproductive system causing deformities but can also be found on the abdominal sidewall and on other organs in the abdominal area. In rare cases lesions have been found on the lungs, diaphragm and brain. These lesions usually leak at the time of a monthly cycle causing inflammation and painful episodes. Endometriosis is referred to as an inflammatory disease.  A diagnosis and the extent of the disease can only be properly determined by performing investigative surgery by laparoscopy. 

There is no known reason for what causes Endometriosis and therefore no known cure for the disease anywhere in the world. Organisations like the World Endometriosis Research Foundation communicate with teams in America, Germany, France and other countries who are collaborating research to help find answers to many of our questions.  It is however possible to reduce the amount of pain and abdominal discomfort for some women by hormone treatment, laparoscopic excision surgery, adapting diet, learning relaxation, doing exercises or having regular activities and in some cases adapting lifestyle to eliminate stress.  In severe cases the internal organs can fuse together. Deformity of the reproductive system, infertility, lesions, adhesion, chocolate cysts, irritable bowel syndrome, bloating, painful sex, bladder problems are all common traits of Endometriosis and cause agonising pain. Fed by the hormone Estrogen it will only be completely gone for most women once through natural menopause. This usually happens in her 50s and once her ovaries have finished producing Estrogen then she is through menopause.  However, as previously stated this is not true for all women. Estrogen can come from other sources.  There are also other studies that have investigated the potential link between environmental toxins like dioxins and endometriosis.  These studies in time may answer why some women suffer worse than others, why a few women still suffer after menopause.

What makes this disease difficult to manage is some women will only be affected by experiencing painful heavy periods, others will have that and be in pain some of the time or all of the time throughout each month.  Some women will be able to manage it and have a relatively normal life and others will be debilitated unable to function normally.  Some women will find pain medicine from the supermarket will take away the pain, while others will be prescribed something like Tramadol and/or Morphine which in severe cases will only take the edge off the pain. Some women will have no pain but the disease has caused infertility, others will have children but be in pain between pregnancies.  There is a real inconsistency between women as to how each woman will suffer from having Endometriosis which is yet to be fully understood.  It can require multiple surgeries with no cure in sight. It is also thought to be hereditary.  Women in New Zealand are categorized as mild, moderate or severe. In some countries they use a grade of 1-4, 1 being mild to grade 4 being severe. It is a painful debilitating disease for those at the severe end of the scale.  The average time of diagnosis is seven years, most likely because there is no way of confirming the disease without invasive and expensive investigative surgery. It is a variety of colours including from clear to dark brown. Women with this severe disease require a gynecologist who has extensive experience dealing with Endometriosis and is considered to be a skilled surgeon in Laparoscopic Excisional Surgery. 

Endometriosis can impact everything about life because of its physical symptoms. Becoming debilitated by pain and/or nausea  throughout life some of the time or all of the time can typically have a negative impact on general health, family, relationships, finances, career prospects and achievements. It is without doubt listed as one of the most painful diseases to manage and work through in order to achieve the most out of life. There is a lack of information and therefore understanding which for many women of this disease has lead to drawn out diagnoses and no treatment plan.  The best outcome for young girls or women is to be diagnosed as early as possible.  New Zealand is the first country to have a presentation for young girls at school.  The ME presentation has been developed by Endometriosis New Zealand.  Through listening to this presentation young girls are able to identify if they have a normal period or if they should go a step further and seek medical advice.  This approach is working to identify sufferers of Endometriosis much earlier and therefore give the appropriate medical assistance to minimize the negative affects of the disease. 

Next Blog  #3/15  Plenty questions, where to link for answers


Up and coming Blogs 

#4/15 Choosing your medical team,  #5/15 Attitude versus aggressive disease, #6/15 Pelvic pain & nausea, #7/15 Diet & exercise,  #8/15 Medication, treatments and mind control, #9/15 Find your own pace #10/15 Gone Rampant, #11/15 Surgery & recovery,  #12/15 Moving forward debilitated or not, #13/15 Relationships, family & friends, #14/15 Other things happen, #15/15 Living beyond Endometriosis

Previous Blogs

#1/15 The Agony of how I found out