A quite long read about Endometriosis

Memories

We experience a great deal of events across childhood, and yet as adults we recall only a handful, mostly our “firsts”, our first ice cream, our first day at school, or significant life events. Although we sometimes see memory as a video camera, recording our lives accurately and without bias is a myth. An actual photograph, taken by flashbulb, preserves everything within its scope; it is altogether indiscriminate. Our flashbulb memories are not…

Our childhood memories are intricately shaped by our family and culture. While family culture means different things to different people, to me it swirls around one word- “Medicine”.

Growing up in a house with four doctors (two gynaecologists/obstetritians, two urologists), our burgundy-colored trim-line phone rang constanly, even during the late night hours. Someone, somewhere was always in need of some help. Sadly, I grew up in a house where parents, as well as grandparents were mostly absent and most of my days were spent with babysitters from different countries. The advantage of learning different languages as a kid (you can read about it here) did not necessarily outweigh the feeling of loneliness one has when one constantly misses a parent. Nannys and I used to play a lot, mostly using first aid kids, stetoscopes and syringes (without needles).

When the grownups got back from work, they often discussed the latest findings in their fields of expertise. I am not even sure what was work and what was real life for them, as these two were merely the same. Prior to specialising in obstetrics and gynaecology grandma was a surgeon. Being a real foodie herself, she also liked to cook. The food we had for dinner was made of slices of ingredients cut with unimaginable geometric accuracy. I soon understood, that even the language spoken in our house was different from what the neighbours spoke, there was lots of medical wording, which I, unwittingly too, used while talking to my friends.

My great grandfather was one of the most famous surgeons, a pioneer in country´s modern medicine, whose memory was kept alive through stories, photographs and the little gratitude people expressed when mentioning his name. One of the other “firsts” I remember is the unspoken, but very well felt and pleasuring, devotion to humanity that existed at home and that I, as a grownup am more than proud of. Maybe that is why, when the time came, I decided to be a doctor too and do something to help that somebody, somewhere, in need of help.

“One of the essential qualities of the clinician is interest in humanity, for the secret of the care of the patient is in caring for the patient” (Frances W Peabody in The Care of the Patient).

Memories are generally prone to distortion over time, but researchers have found some evidence to suggest that emotional memories are more resistant to the decay processes that wear away at all memories with time, says review author Elizabeth Kensinger of Boston College: “It’s clear that there are some aspects of events that are really well-preserved, and then people may completely forget other aspects of the event altogether.”

Endometriosis

Might sound weird, or boring, but endometriosis is one of my “first words”. A word my earliest memories hold, because of the frequency it was mentioned at home and in general, around me. The two lady gynecologists that raised me, loved to talk about the disease that affects 1 in 10 of us, women.

The word endometriosis comes from the Greek endon meaning “within” and the Greek metra meaning “uterus”, akin to Greek meter meaning “mother”. The word osis comes from the Greek and/or Latin suffix meanings “affected with, condition, abnormal process”.

Considering the hardships of diagnosing this disease, this ratio could be even more dramatic in real. It takes shocking average of 7.5 years to be diagnosed with endometriosis in the UK and a bit less in the US. I looked for the statistics for Georgia (country, where I´m from), but it was unavailable. For Norway it is 7 years.

Endometriosis is an estrogen-dependent inflammatory disease characterized by the presence of ectopic endometrial implants. Endometrium, the innermost lining of the womb spreads to the places it normally should not spread to. Because the growth of the implants is dependent on ovarian produced steroids, it is a disease that most severely affects women in their reproductive years. Patients can present with a wide-range of symptoms ranging from being asymptomatic to infertile. Although most women are not diagnosed until adulthood, it has been estimated that nearly 70% of all women with endometriosis started experiencing symptoms before 20 years old.

The most common symptom of endometriosis is pain that occurs prior to, during, or after menstruation. The pain can occur during sexual intercourse, during urination, or during bowel movements and it can be disabling. It can also cause chronic pain in the low back or pelvis. Other women have mild symptoms or no symptoms. Symptoms such as pelvic cramps, nausea and bladder and bowel problems can mean that days in the office or workplace can be at best, uncomfortable and at worst, unbearable.

Endometriosis can influence fertility in several ways: distorted anatomy of the pelvis, adhesions, scarred fallopian tubes, inflammation of the pelvic structures, altered immune system functioning, changes in the hormonal environment of the eggs, impaired implantation of a pregnancy, and altered egg quality. Research found that the women with endometriosis had lower levels of a molecule called HDAC3 in the lining of the uterus compared with fertile women without endometriosis. HDAC3, is a type of molecule which is involved in controlling the levels of proteins that particular genes give rise to. About 25 to 50% of infertile women have endometriosis, and 30 to 50% of women with endometriosis are infertile.

The impacts of endometriosis are keenly felt by the economy. A 2016 study comparing the economic burden of endometriosis in different countries found that the indirect costs (resulting from sick leave and unemployment due to endometriosis), ranged from $3314 per woman per year in Austria, to $15,737 per woman per year in the USA. A 2010 American study found that women with endometriosis missed work an average of 19.3 days of per year due to treatments, surgeries and recovery (10% of the working year, huh?). Worryingly, 69 per cent of the 107 women with endometriosis surveyed in the study said they continued working despite feeling pain, a phenomenon that has been termed ‘presenteeism’.

Additionally, 20–25% of patients are asymptomatic and never been investigated.

The actors Lena Dunham and Whoopi Goldberg are among the prominent figures who have spoken out about having the condition.

WHO writes that:

The variable and broad symptoms of endometriosis mean that healthcare workers do not easily diagnose it and many individuals suffering from it have limited awareness of the condition. This can cause a lengthy delay between onset of symptoms and diagnosis.

At present, there is no known cure for endometriosis, and treatment is usually aimed at controlling symptoms.

Access to early diagnosis and effective treatment of endometriosis is important, but is limited in many settings, including in low- and middle-income countries.

There is a need for more research and awareness raising around the world to ensure effective prevention, early diagnosis, and improved management of the disease.

WHO´s focus on early diagnosis of Endometriosis is understandable as diagnosing the “silent disease” in early stages means preventing it´s most common complications, infertility and cancer, avoiding all the stress, managing the pain, uncertainity women have to bear for several years, as well as opening new ways for better understanding the underrated disease and who knows, maybe also helping find newer, more efficient ways of treatment. In medicine, as in the body, everything seems to be well-connected.

According to the results of the largest-ever study of its kind involving 13,500 women with the condition in the UK revealed that 50% of women with endometriosis had suicidal thoughts, and many said they rely on highly addictive painkillers. Most also said endometriosis — involving painful periods — had badly affected their education, career and relationships.

Note: If you are experiencing suicidal thoughts or other symptoms of mental health problems, there are many services available for you. Contact your local municipality, GP or other healthcare professional. The sooner you seek help, the better your chances of getting better. For Norway- pls call 116 123 anytime throughout the day.

Ingvild

As the international day of action for women`s health is around the corner, I spoke with one beautiful and smart woman from Stavanger, Ingvild about her journey with endometriosis, the difficulties she has faced and whether or not they have affected her quality of life.

“There were a couple of years in my life, when I was basically bed ridden for 2–3 weeks a month. I wasn’t even able to walk properly. Now I can.. but still have 2–3 days were I am bed ridden. And I still suffer from chronic pain.”

“My journey started already at 13 with my first period. I bled a lot and had severe pain. I thought it was normal therefore I pushed myself to cope with school and other commitments. I always thought, even as a younger child that I was ‘weaker’ than other children.

15 years later, at age 28 I was admitted to the emergency unit for severe abdominal pain. The pain had just excelled more and more the older I got. The doctor told me he was very sure I had endometriosis because he could see that I had two big chocolate cysts. I was booked for a surgery that very same day. This was the first time I ever heard of endometriosis. I had been sick with pneumonia, chronic earaches for a year and I felt my body more and more tired and fatigued.

When they did my first lap in Stavanger hospital they just looked in my abdomen and made a quick decision to end the surgery as the condition had advanced and needed the best expert available as it was deep infiltrating and had spred to other major organs.

Surgery just relieved temporary pain. It was short lived and came back with a vengeance. My second surgery I had in Barcelona by one of the best endometriosis experts in the world. This surgery allowed me to finally get pregnant. Now I try to protect myself from possible new inflammation by eating organic wholesome food, basically a paleo diet, gluten, dairy and sugar free.

Has endometriosis affected your plans to get pregnant?

“Yes, severe endometriosis affects fertility. I did 5 IVF-s to finally conceive my daughter. I had high immunological market and had to follow a special protocol with immunologist through the process.”

After experiencing chronic pain for years before getting diagnosed with endometriosis, what would it mean to you to have been able to have your diagnosis earlier?

“ Early diagnosis is obviously important so you know there is something physically wrong with you and it is not all in your head and also from stopping the disease in early stage. I am scared of new surgeries as the endometriosis will come back and scar tissue also gives pain.”

Memories again

I loved the days when mom took me to her clinic. Sitting in the chair with a sign “Mariana, private” made me feel supreme. On the other side of the wiriting table sat her assistant Nelly, who registered mom´s findings onto patient-books. The ultrasound in the corner looked like some kind of a mystery box that could look into humans bodies and detect their innermost secrets, the long, linoleum-floored corridor was always crowded with a long line of women. Good guess, mom was a women’s doctor.

Most of these women were pregnant, but some were there to find out the reasons for their inability to get pregnant. Before putting the magic stick on their tummies, mom would ask them about their complaints, symptoms, habits and etc — to collect the so called “anamnesis”. And soon there was my favourite part, putting the magic stick and looking into the monitor to find out their “secret”. Mom, already using her myopia glasses, would still narrow her eyes for a full focus. A minute of silence would fall..

Those with pregnant tummies got excited to know the gender of their future baby, their faces expressed contagious happiness. I felt happy for them too. Those with flat tummies looked eager to find out the reasons that kept them unable to reach this kind of lament. Their eyes carried a detectable glimpse of desperation. One of the most common things mom used to tell them was: “ this needs to be further investigated on endometriosis”. The meaning of the word- “Endometriosis” was never explained to me at that point, but somehow even in very early years of my life I had an associative understanding of what it might mean. To me “Endometriosis” was associated with sad faces, frustration, despair, problems with getting pregnant and generally with something more like the bad-news than good.

I still remember the emotion of feeling sorry for these women. Sitting in my bean bag closest to the TV while trying to put my thoughts together for endometriosis today and looking back to the times in the 80´s when I was sitting in my little, red chair at mom's office, I notice, that not much has been done to help these women, neither has the situation really changed. I dont know why these womens voices werent heard and how much more time it shall take, but I i do hope that the science that my family has devoted their lives to, will soon find more efficient, more convenient ways to diagnose their conditions and to end their pain.

Written By Mariana T. Eiane