It’s ironically funny that until a few weeks ago (June 2020) I had never heard the word ‘Endometriosis’ before. It is funny because I have been living with it for what I believe has been years.
I thought I would make a little section on my blog where I can virtually vent, rage, research and connect with others now that Endometriosis is going to be a lifelong companion of mine. I also feel it is important that my friends and family should get acquainted too!
What is Endometriosis?
Endometriosis is a common inflammatory disease estimated to affect 176 million girls and women worldwide in their reproductive years. The statistics say 1 in 10 women will have this condition.
Endometriosis occurs when tissue similar to the lining of the uterus is found in places outside of the uterus. The tissue can form nodules or plaques which may be visualised at surgery. Endometriosis is commonly found in the pelvic region but may be also be found on the pelvic ligaments, ovaries and bowel.
The Stages of Endometriosis
Minimal (Stage I)
Typically small patches, surface lesions or inflammation on or around organs in the pelvic cavity.
Mild (Stage II)
More extensive than stage I but infiltration of pelvic organs still very limited, without a great deal of scarring or adhesions.
Moderate (Stage III)
Sometimes more widespread and starting to infiltrate pelvic organs, peritoneum (pelvic side walls) or other structures. Sometimes there is also scarring and adhesions.
Severe (Stage IV)
Infiltrative and affecting many pelvic organs and ovaries, often with distortion of the anatomy and adhesions.
What causes Endometriosis?
The cause of endometriosis is not fully understood though there are several strong theories. The cause is now generally considered multi-factorial with a strong genetic link, possibly also how genetics behave with other influences (perhaps by environmental factors for example).
Endometriosis seems to run in families, so you are more likely to have it if there is a family history. It is important to remember not everyone who has had symptoms will have been diagnosed, but they may have experienced the symptoms.
Symptoms of Endometriosis
Endometriosis has elements of a pain syndrome often referred to as central neurological sensitisation. There can be an overlap with other conditions characterized by pelvic pain and infertility, including irritable bowel syndrome.
- Pain with periods. Often the most common symptom
- Bowel problems like bloating, diarrhoea, constipation, pain with bowel movements, painful wind (sometimes diagnosed as Irritable Bowel Syndrome)
- Painful intercourse
- Sub-fertility or infertility
- Tiredness and low energy
- Pain in other places such as the lower back
- Pain at other times e.g. with ovulation or intermittently throughout the month
- Premenstrual syndrome (PMS). This might make you feel moody, emotional or irritable
- Abnormal menstrual bleeding
- Bladder troubles like interstitial cystitis (IC)
Diagnosis of Endometriosis
A doctor may suspect you have endometriosis based on your medical history and symptoms. A physical examination is often performed and scans, blood tests and other investigations may be recommended. These tests do not diagnose endometriosis but can be useful in determining treatment and next steps. Endometriosis can only be definitely diagnosed by viewing the pelvic cavity at laparoscopy (key hole surgery). This is done in hospital under general anaesthetic and is best performed by a gynaecologist with expertise in treating endometriosis. The endometriosis should be removed and sent to the lab for confirmation.
Internationally, there is a diagnostic delay of 8+ years from first presentation of symptoms to a doctor with diagnosis.
Why the delay?
Endometriosis can occur from a girls first menstrual period.
Early intervention is vital to improve quality of life, halt the progression of the disease and ensure fertility is not compromised.
Unfortunately millions of women from generations past and during present times may have suffered a whole lifetime but never had a diagnosis or suitable treatment and the effects sometimes continue beyond the menopause.
End the silence
It’s time to end the silence on Endo! It’s time for us women to start speaking up about our journeys and coming together to highlight this as an important medical issue. Let’s get on social media, lets hashtag #endthesilenceonendo and lets fight for the right to get funding into good quality medical research! Let us never give up the fight and let us support each other so that we may all rise above the pain and the fatigue and make the most of what this glorious world has to offer!