One In Ten

I read Norwegian author Karen Havelin‘s novel “Please Read This Leaflet Carefully” already in May, on my way back from New York. I read a book review about it in the Guardian last week and it lingered back onto my radar. The novel is about a Norwegian expat who lives in New York and suffers from severe endometriosis. “Niche!” you scream. “One in ten” is my response.

I was diagnosed with endometriosis a decade ago and it was operated a year after that. Until extremely recently I have been a master concealer of my chronic illness. I went as far as had my surgery during my annual holiday, so as to avoid having to file for sick leave and tell my (male) management about my “women’s issues”.
Why so crazy?” you ask. Havelin has the description:

I went on with my basic programming and ignored the symptoms until my endometriosis was a hideous stage-four mess that had taken over my pelvis and abdomen and left me twisted with pain. It felt as if there was something ugly in not having done more to protect myself -in clearly thinking it was okay for me to be in such pain. It felt disgusting, like I had done it to myself.

I should like to add that in addition I did feel like I should have been more in control of my fucking bleeding (all women bleed! Don’t stick your neck out!), I was after all in my 30s at the time! Who wants to sound like a teenage broken record about painful periods in their 30s! No one!

Despite endometriosis affecting one in ten women worldwide, still very little is talked about it. The methods recommended for patients to keep the symptoms at bay even today include Goop-level woodoo (more on this below), and dietary- and exercise tips. There’s no cure to endometriosis, and the most common treatment is a surgical operation, often followed by hormonal medication. The choice of prescription medicines specifically treating endometriosis is still extremely limited and very expensive. I am lucky to be covered by an extensive health insurance policy, but at €50 / month the pills understandably are unaccessible for very many sufferers.

One in ten women in the world and no readily available, affordable medication. Let’s have a quick moment to think about the flurry of meds to treat erectile dysfunction, including their pricing and availability.

Thank you.

I will spare you from my life of pain pre-op and instead list some of things that I have tried post-op as the cramps, dizziness and pains caused by internal adhesions are not entirely kept away by the medication. Some of the following was recommended by medical practitioners, some by fellow sufferers, facialists, massage therapists, witches and horoscopes:

  • Hydrocolonics
  • Excluding dairy from diet
  • Excluding wheat from diet
  • Swimming
  • Having saunas / not having saunas
  • Chiropractic
  • Hot stone massages
  • Ice-packs and/or hot water bottles
  • Alternating with painkillers and wine for relaxation
  • Making Ayurvedic massage oil blends myself, according to an ancient recipe
  • Yoga
  • Laxatives
  • Not drinking fizzy drinks
  • Taking various herbal capsules and ointments
  • Being less anxious and stressed“, my all time favourite medical advise.
  • Walking in forests. This was a recommendation by a male GP.

Havelin’s story resonates because the protagonist is an expat like myself. I had a very strong need to surrender my ailing body into the hands of Nordic women, as if my intestines somehow would better react to treatment by someone with geographically proximate origin. My chiropractor is Danish, pilates instructor Icelandic and my GP half Swedish. Sadly my Finnish ovaries seem to give a shit about their passports.

Back to the book. You do not need to have endometriosis or otherwise suffer from pain in order to enjoy Havelin’s novel, but admittedly at least having an interest in women’s health likely helps. There’s another recent book about the topic that I have wanted to read, Abby Norman’s “Ask me about my uterus”. The book is a quest to make doctors believe in women’s pain and hopefully take it seriously (see “take walks in a forest” above).

“Despite all of the female body’s talents, from youth it’s constantly wracked by hurricanes, snow and rain – by cramps and pain, premenstrual craziness, menstrual craziness, pill-related craziness; waves of uncontrollable rage and sadness, fluctuating weight and libido, urinary tract infections, yeast infections, not to mention the smorgasbord of mind boggling changes that is pregnancy. There are so many things that swell, ache, cramp and droop. So many places an eponymous cancer can settle – breast, uterus, ovaries – and so many illnesses that are specifically female. The male body seems like a sunny campsite in comparison.”

For a more statistical take on gender bias in the medical world, have a look at Invisible Women by Caroline Criado Perez.

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