The Painful Truth - A film about Endometriosis and Adenomyosis
A film produced by the Norwegian Endometriosis Association, The Painful Truth, is a 42- minute film that was screened on March 20, 2021, to mark endometriosis awareness month. The film aims to showcase how a lack of diagnosis or an incorrect diagnosis of endometriosis and Adenomyosis can adversely impact the quality of life and well-being. In Norway alone, it takes an average of 7 years to get an Endometriosis diagnosis. And there is a lack of data on Adenomyosis diagnosis.
This film follows an interview format with specialists and patients speaking about the diagnosis, surgeries, symptoms, and living a day-to-day routine with a chronic illness. Several patients speak about having to undergo multiple, repeated and extensive surgeries, which do not guarantee a complete cure. Untreated Endometriosis can and has led to cysts, adhesions and scarring.
Some instances from the film stand out - a girl in her twenties who has waited months for a surgery post which she experiences four painless days before the pain is back. She describes her life as “having to grit my teeth and live every day”. Another girl who experienced intense pain and fainted in the toilet was later told that she had to have several parts of her colon removed. Months of uninterrupted pain for most entails getting through the everyday routine with the pain intact, and momentary relief is the only solace.
Dr Anton, a senior consultant and physician at the women’s clinic in Oslo University hospital, believes that Endometriosis is when endometrial cells are found outside the uterus. What is more, he attributes the cause of Endometriosis to “Retrograde Menstruation”, where the cells menstruate into the abdominal cave. This stimulates estrogen and remains in the abdominal cavity. The mucosal cells in the abdomen cavity, according to Dr Anton, turn into Endometriosis.
Commonly referred to as Sampson’s Theory, or Sampson’s Hypothesis of Retrograde Menstruation, originated in the research of Dr John A. Sampson in the 1920s. Sampson hypothesized that women with endometriosis experienced two types of flow during a period–the “normal” flow out of the vagina and the “retrograde” flow out of the fallopian tubes. He further suggested that the retrograde portion attached itself to the pelvic organs and “spread” over time. Sadly, many treatments operate under the assumption that this is true.
The myth of Retrograde Menstruation has long been debunked. As early as 1981, four crucial shortcomings were identified with Sampson’s retrograde menstruation theory -
The pathogenesis of endometriosis differentiates it from the endometrium (the tissue inside the uterus).
Women develop endometriosis post-hysterectomy.
Men develop endometriosis (rare, but true!)
Endometriosis has been found in the autopsy of female fetuses, suggesting that endometriosis is placed throughout the body as part of organ development.
Adenomyosis and Endometriosis have much in common and are sometimes identified as cousins. Dr John Hausken, a gynaecologist, claims that the pain Endometrial patients experience is not severe and is why many gynaecologists have a relaxed attitude. He adds - “endometriosis is a natural condition which many go through at some stage, and it is just mucosal cells going astray. One can live with it and have children. Becoming pregnant can end Endometriosis pain”.
Dr John believes that society has a passive attitude towards Endometriosis, and that is the right attitude to have. While on one side, doctors speak of endometriosis being not more than mucosal cells and bearable pain, on the other side, women living with Endometriosis describe debilitating pain, remaining undiagnosed for a majority of their lives and even treatment methods that were experiments. Seizures, dependence on painkillers and dismissal from doctors that the pain was normal had been a routine for most.
One harrowing experience recounts a tale of 7 different brands of contraceptives before finding one that worked. Deep infiltrating endometriosis in the bowels, the rectum and several places left a menstruator requiring extensive surgery. While surgeries have helped some, one woman who advocated for herself underwent surgery for Endometriosis. Although the surgery didn’t help, she had confirmation that it was Endometriosis. When her symptoms did not get better, she had to fight for a follow-up check, resulting in a diagnosis of Adenomyosis in her uterus.
Menopause at 27 after a hysterectomy did not guarantee an improved quality of life for a mother of 3 children who has had Endometriosis for 20 years of her life. Her daughter is now the same age as her, and the stress runs high.
There is still a long way to go. Awareness about Endometriosis must increase. Many undergo surgery/treatment with very minimal follow-up. Endometriosis and Adenomyosis severely impact the quality of life. The Endometriosis Association in Norway is looking to establish a national centre to educate health professionals and offer holistic training to better the health care system and allow for comprehensive and holistic treatment for endometriosis and Adenomyosis.