Endometriosis is a chronic inflammatory condition which is surprisingly common but is often poorly understood and rarely discussed.
It can start before your first period and tends to diminish with the menopause but can last throughout an entire life. It can occur as commonly as in 1 in 10 women and is characterised by tissue, similar to the tissue that grows within the uterus, growing outside the uterus.
While this tissue is most commonly found on the ovaries, fallopian tubes, and other reproductive areas, it has been reported as being discovered on patients’ bowels, lungs, skin and even on the brain.
There is no known cure but rather different treatments to manage and relieve symptoms. Before you can get to the treatment stage, you need a diagnosis.
I always thought I was just a bit of a wuss when it came to period pain. I would absolutely dread “the time of the month” and would be buckled with pain and discomfort. I thought this was normal.
In my 20’s I was on a variety of different oral contraceptives and not having a ‘proper’ period seemed to help. What I mean by this is when you take the combined oral pill, you have what is called a withdrawal bleed, as you are not ovulating.
My experience was a much lighter, shortened and less awful time. However, as with all medications, it is a person’s personal experience with them that decides if they are effective or not and as I was coming into my 30’s I felt the other side effects outweighed the benefits so I was back to the full-blown period unpleasantness.
I wasn’t diagnosed and I didn’t actually believe I had anything wrong with me. While some discomfort happens to many women, excruciating a debilitating pain is not normal.
As I got further into my midwifery career, it occurred to me when looking after different women who suffered from endometriosis, I suspected my symptoms mirrored theirs and that I might be amongst their number.
Shortly after I got married, I suffered a fairly horrendous ectopic pregnancy which resulted in emergency surgery, as with many women, it was only during my surgery that my suspicions were confirmed, and endometrial lesions were noted by the surgeon.
Endometriosis is the leading cause of infertility, the fact that I got pregnant without fertility treatment with my son Felix was a miracle but lots of women are not as lucky.
I have spoken with so many women over the years who suffered in silence for years and years or attended unsympathetic medical personnel who dismissed their pain and concerns.
Worse still, many women are were misdiagnosed with other conditions or accused of having a psychosomatic illness (ie. made up symptoms). The area of endometriosis research is poorly funded and there is a huge gap in the knowledge of the disease and treatments for symptoms.
While hormonal treatments may help some, surgical treatments may help others, or a combination of both. Some women end up being advised or choosing to have a hysterectomy, but this is no way guarantees that your disease will be dramatically improved.
Other surgical options such as excision may have better results and fewer complications. So be informed and get the right advice.
As with all of these things, knowledge is power. A wonderful resource is the brilliant Endometriosis Association of Ireland.
They have lots of information and support. They can also provide sufferer to sufferer peer support and have a forum for members to discuss treatment options, both at home and abroad.
As it seems with so much of women’s healthcare issues, we lack evidence-based research and full understanding. If you do suffer from endometriosis or believe you do, talk with your GP in the first instance and ask for a referral to a consultant who has experience and specialises in the area.
While painful periods are one of the main symptoms, there are many others such as painful sex, pain around ovulation, migraine, fatigue (the list is huge). Do not suffer for years in silence, while there is no cure, there is help and no person deserves to face years of pain, thinking that it is normal.