Dee Montague Coast has asthma. She also has endometriosis, an inflammatory condition in which tissue that resembles the lining of the uterus (womb lining) is outside the uterus and usually attaches to other organs in the pelvis, often causing painful symptoms. She compares her experience with two states.
“My experience with asthma has been amazing. My treatment is almost entirely patient dependent, I have regular checkups, and healthcare professionals almost always understand what asthma is and how it can affect patients,” she writes on the feminist health blog I founded.
“My symptoms and how I deal with them are not considered character flaws. I wish I could say the same about my menstrual health.
Montagu-Cost goes on to describe the countless appointments, birth control, blood tests, STD tests, misdiagnosis, and even surgeries she had before paying privately to see an endometriosis specialist. Only then, more than 20 years after the onset of painful periods, in the 4th week, she was finally diagnosed with extensive endometriosis.
“Fun fact: I was born with asthma and no doctor ever said that my asthma symptoms were normal, psychosomatic or something I just had to deal with. I have never been denied medicine or treatment,” she says.
Endometriosis is the second most common gynecological disease after uterine fibroids, affecting an estimated one in ten women and women identified as girls at birth. This can cause symptoms such as excruciatingly painful or heavy periods, painful sex, infertility or fertility issues, bladder or bowel problems, as well as chronic pelvic and abdominal pain, bloating (known as “endobulla”), and fatigue. .
Endometriosis costs the UK economy £8.2bn a year in treatment, job losses and healthcare. Despite this and the fact that it affects about the same number of women as diabetes, medical science still does not know what causes this condition, and there is no cure for it.
Currently, endometriosis can only be diagnosed through laparoscopic surgery, and the gold standard of treatment is surgery to remove tissue. Again, this is not a panacea; Help is often short-lived and specialists are so scarce that access to surgery is usually a zip code lottery. Instead, many patients take birth control pills or other hormonal contraceptives for years without even knowing a diagnosis.
Patients are so rejected, ignored, mistrusted and deceived that in the UK it takes an average of eight years to diagnose endometriosis.
It wasn’t until 2017 that the National Institute for Health and Excellence (Nice), the government agency that provides advice on improving health care and social care in England, published its first recommendations on endometriosis, including advising doctors to “listen to women”. However, I have heard from many other women who have been waiting for a diagnosis for over two decades; who have been repeatedly told by doctors that their symptoms are “just bad periods” or “all in your head”, or who have been misdiagnosed as a syndrome irritable bowel (IBS), depression or anxiety and sent on their merry way.
Many, like Isabelle Dunmore, simply give up, feeling they’ve exhausted their options. “After three and a half years of actively seeking help, explaining my symptoms and medical history to several doctors, and undergoing all sorts of tests and scans, I gave up,” she writes.
“I stopped trying to understand why I was doubled over in pain all the time, why I had long, heavy and irregular periods, why I sometimes lost control of bowel movements, felt like I was about to pass out from fatigue and bled heavily, or why my my body let me down for days after nights when I curled up in pain.
Instead, she told herself that maybe it’s just her head, thinking, “Maybe every woman goes through this and my pain tolerance is just really low,” she says.
Finally, five years later, Dunmore was diagnosed with endometriosis “almost by accident” during surgery to remove an ovarian cyst the size of a tennis ball. Even this was initially misdiagnosed as appendicitis despite her history of reproductive health issues.
“So often we see menstrual problems go back to normal — people are being told they are making it up, or that they are wimps, or they just have to put up with it,” says Emma Cox, CEO of Endometriosis UK. “Why do we assume that all periods will be the same? We are all different in shape and size, our eyes are not the same, our breasts are not the same, why should our uterus and gynecological health be like this?”
For Cox, part of the problem is treating menstrual cramps simply by giving young women pills. “It looks like we are being treated with hormones without testing to find the root cause. The pills can treat the symptoms of endometriosis, although they don’t cure the disease, but what other condition could we give to someone for 10 years without looking for the cause or even telling them that they had one underlying cause? ? “, she said. “It just shows that menstrual problems are not a priority.”
What patients really need, adds Cox, is the development of a non-surgical diagnostic test, improved pain management guidelines and increased access to specialized endometriosis centers, not to mention major investment in research into causes, treatment options, and ultimately a cure. All of this must go hand in hand with improved education and training for physicians and a huge cultural shift in attitudes towards menstrual health.
One of the most shocking stories ever posted to the #ShitMyDoctorSays Instagram series I started in 2020 was about a doctor with endometriosis. “I worked in theaters and heard it straight from the surgeon. He hated examining endometriosis on the laparoscopy list because he said, “You’re all fucking crazy,” she writes. “It is depressing to watch, and even more so, an unconscious patient who betrayed his trust in a biased doctor who, even before anesthesia, wrote them off.”
For decades, endometriosis has also suffered from the misconception that it is an occupational disease of women, especially one that affects middle-class, high-income white women who choose to have children. Perhaps this was largely because they were the only patients who had enough time, status and resources to successfully fight for a diagnosis.
This is a misconception that continues to hurt women of color with endometriosis like Fiona Timba, who runs the @EndoSoBlack Instagram account. “In the past, endometriosis was considered a “disease of white women.” Doctors thought it was less common in black women, when in fact medical professionals often ignore the pain of black women,” she writes.
Another troubling thread running through the treatment of endometriosis, and other reproductive health problems, is the apparent tendency of some gynecological surgeons to remove women’s wombs on the fly. Hysterectomy is not a cure for endometriosis. All too often I hear from women, many of whom are young and still hoping to one day start a family, who have been recommended this major life-changing surgery as their first line of treatment.
The good news is that there has been a huge explosion of periodic activity in recent years. Menstrual problems have been affected by major awareness campaigns, thanks in large part to the tireless campaigning, voice and hard work of patient organizations, activists and advocates trying to bring about a change in attitudes towards menstrual health.
One of the campaigns that helped bring about this shift was the Menstrual Health Education Petition launched by Alice Smith, Trustee of Endometriosis UK. The petition, which has over 100,000 signatures, has influenced the inclusion of menstruation in the English school curriculum, which Endometriosis UK and Smith hope will help “educate a generation about the difference between normal and abnormal menstrual problems”.
Endometriosis UK and other regional charities are currently working to bring the program to schools in Wales, Scotland and Northern Ireland. Fair Treatment for Women Wales (FTWW), where Dee Montagu-Coast now works part-time, is one of the charities that has been working since 2018 to raise awareness of menstrual health in Wales. FTWW started as a Facebook group and has grown into a national charity advising the Welsh Government on women’s health issues including menstruation, multiple miscarriages and menopause, as well as chronic and autoimmune diseases.
Introducing the All-Party Parliamentary Group Report on Endometriosis in October 2020, then-Women’s Health Minister Nadine Dorries said it was women’s responsibility not to be deceived by doctors, she repeated on BBC Radio 4. women’s hour next year. While I have absolutely nothing against giving women the opportunity to stand up for themselves, her words, delivered by a minister capable of making meaningful structural changes, smack of victim blaming.
It is noteworthy that her first remarks were made in response, or rather to avoid the question, “When is the government going to take this up?” [the All-Party Parliamentary Group report’s recommendation on] reduce diagnostic time [for endometriosis]? At the time of this writing, the government has yet to make specific commitments, apparently with the intention of blaming patients instead and promoting a program of personal responsibility.
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Source: I News
I’m Raymond Molina, a professional writer and journalist with over 5 years of experience in the media industry. I currently work for 24 News Reporters, where I write for the health section of their news website. In my role, I am responsible for researching and writing stories on current health trends and issues. My articles are often seen as thought-provoking pieces that provide valuable insight into the state of society’s wellbeing.