[See post credit entry for March 2021 update]
I have never really spoken about my six-year battle with Endometriosis. It’s been tough, and to date, I’ve never felt able or indeed confident enough to talk about it. The recent awareness campaign culminating in the report issued on 27th March 2017 by the Women’s Health APPG spearheaded by Paula Sherriff MP, as well as the brave recent disclosures of the talented Lena Dunham, however, have changed my mind. I feel now would be a good time to share my experience with others who may find it reassuring to know they are not alone in the galaxy, and that help is never far, far away.
Let’s start with the opening crawl: Endometriosis is a chronic condition affecting many women across the world (one in ten here in the U.K.) and causes endometrial tissue (which normally lines the uterus) to grow outside of the uterus, but is unable to escape the body in the same way as uterus cells. This causes scarring and growth, which can take various forms, including lesions, modules and cysts. The causes of the disease are generally unknown and diagnosis is particularly challenging in light of this lack of understanding, as well as the broad range of symptoms a person may be experiencing.
From the news reports last week, in some respects, I consider myself one of the lucky ones. I was diagnosed with the disease within a month back in 2011, having visited a savvy ultrasound consultant in Cardiff who was investigating a large and painful nodule I had protruding near my belly button. It was this incredible lady who made the connection between the unusual tissue protrusion and the cyclical pain I was experiencing and she referred me immediately to an expert private gynecologist who confirmed the prognosis within a fortnight.
After my initial diagnosis I had surgery to remove the large nodule (which was about 4cm and as diseased as the horrid Salacious B Crumb) shortly afterwards.
Instead of the average 7 years, my clinical diagnostic journey was more akin to the Kessler Run undertaken by the legendary Millennium Falcon, the speed (maybe not quite 12 parsecs) unquestionably efficient, and for that I am deeply grateful.
The empire strikes back
Whilst much of the emphasis seems to have been on the failures of diagnosis, what many don’t fully appreciate is that the disease is not curable and the options available are not always palatable, or indeed, fully effective.
Hormone treatment is presently the most effective option, and can be used following excision to manage and suppress symptoms for long periods of time. Pregnancy can also alleviate symptoms temporarily but the presence of Endo makes this a less certain option for many sufferers by affecting fertility.
After my first surgery, I (naively) thought that would be the end of it, but three years later the pain escalated to such an extent that I would often be incapacitated for days at a time. More surgery was recommended, followed by a 4 month hormone induced menopause and HRT treatment, which was hoped to force-blast any remaining tissue from my body. I would not advocate this latter treatment as it resulted in horrendous hot flashes and angsty moodiness worthy of young Anakin Skywalker himself.
I didn’t think such pain existed. In any universe.
Part of the difficulty people have had in getting diagnosed is because the symptoms are diverse and often resemble other conditions. Some people may not even know they have it, as some have no symptoms or pain at all, and may only discover the disease when they look to start a family and struggle to do so. I am one of those who experiences chronic pain. Whatever anyone says, the affliction is nothing like regular “period pain”, and the pain (together with other symptoms such as nausea, vertigo and headaches) lasts for many days at various points of the menstrual cycle.
As C-3PO once eloquently informed Jabba the Hutt about the unfortunate fate of Boba Fett having failed into the Sarlacc sand pit, “in [your belly] you will find a new definition of pain and suffering as you are slowly digested over a thousand years“. OK, so I exaggerate a little. Endo is not life threatening, but its symptoms are collectively debilitating. The pain is two-fold: the crippling cramps feel as if I have my very own Sarlacc presiding in the depths of my pelvis; the sharp stabbing pain akin to a cheese-grater-wielding General Grievous, trapped inside, looking for a way out. On top of this, the nausea and general unexplained exhaustion kicks in. For up to ten days of every month, I suffer in relative obscurity as I try and keep it all under the radar and try to continue with my demanding job as a lawyer as best as I can in the circumstances. I have been fortunate that my boss at work has been excellent throughout this time (notwithstanding the fact that I have never actually discussed the condition with him) and I couldn’t have suffered so long without the tireless support of my scruffy-looking scoundrel of a husband.
Strike me down and I will become more powerful as you can imagine (but not in a good Obi-Wan way)
After completing the course of hormone injections in 2014, I hoped that the disease would give me a break, or that maybe I would find myself expecting a little Luke or Leia to alleviate the symptoms via a more natural method, but here I find myself in 2017 sat at home recovering from my third bout of excision surgery.
It was an unpleasant experience overall (but the staff at the Spire hospital were fantastic). What surprised me this time around was how extensive it was. Not only had the disease spread like the Galactic Empire army to engulf most of my pelvic area, but also extended to my liver and setting up additional garrisons upwards onto my diaphragm. This spread does explain, however, then chest pain I have had for a while as well as back and neck pain. I had no idea it could move to areas outside of the pelvis, and I encourage everyone to relay all symptoms you may be having to your doctor, as it seems that most of all of my recent ailments can be attributed to this bizarre and capricious disease. As this piece probably conveys, the disease is a complex weapon system much like the Death Star, but unlike the Empire’s most sophisticated weapon, Endo has no identifiable reactor core that can be taken out by a skilled X-Wing pilot.
After being in surgery for four hours, I returned to my room and was hooked up to a drip and other breathing apparatus to recover. I felt dreadful, the internal trauma caused by the excision of the significant amount of rogue tissue, quite considerable. I was swollen from thighs to belly, as immobile and puffy as the blue organ playing elephant, Max Rebo.
My first venture to the bathroom was a particular highlight, the transition from a lying position to a sitting up one forced ghastly retching, which produced a substance that I can only describe as putrid Bantha milk. That I concluded was the remnants of the anesthetic, but who really knows. A Cantina worthy cocktail of morphine, codeine and paracetamol kept me going through the night and into the days that followed.
Recovery has been frustratingly slow, and it’s taken some time to become less of a clumsy Gonk Droid and to start being able to fend for myself.
A new hope
Whatever happens next, I am sure that I do not want to have to revert to this option again, and living with the pain is no longer an option. With most of the tissue removed, I have a short window of time before the cycle will inevitably start again. So for me, I have some difficult decisions to make.
The reason I have not taken more permanent action to date was because I had plans to have a family of my own, and taking the hormonal option would (of course) not have been a viable option taking account of this aspiration. Sadly, however, the past five years have passed all too quickly: It’s been one long emotional Speeder chase, during which I have had to come to terms with the increasingly likely alternative reality of not being a mother due to my Hoth-like, inhospitable reproductive system.
This realisation and subsequent reluctant acceptance has involved a strange grieving process for a life you will never have but that you’d always hoped you have, as well as grieving for the youngling you will never help bring into this world. Whilst biological motherhood may not be what the midi-chlorians had in mind for me, I take a great deal of comfort in knowing that I already have four beautiful and very special padawans in my life. I will always be there for my nieces and goddaughters as the Organas and Lars’ were there for the young Skywalker twins.
That being said, today is a new day, a new beginning and I am not quite ready to give up and take the permanent option just yet…
For all of you brave women out there fighting their own Battles of Endo, may the force be with you, always.
Post credit scene (9 March 2021 update)
I’m pleased to say that since I wrote this back in 2017, the increase in awareness of endometriosis has been significant, with the 2021 campaign looking collectively at women’s health and how changes need to be made to support women more generally. For too long women are not being listened to and their symptoms dismissed. The APPG has recently released its report, which is available here: https://endometriosis-uk.org/endometriosis-appg . Remember that your voice is important, and that you deserve to be treated with respect by health professionals and your workplace. We are not living in the Galactic Empire, you know!
From my personal perspective, I had about 12 months after my 2017 surgery where I felt like a human being for the first time in a long while, but just like the Emperor himself, the disease resurrected itself from the deep, forcing me to find new ways of adapting to this insidious condition. In the midst of this, we had some initial consultations with a fertility clinic, but the bureaucracy involved meant that by the time we had had a couple of appointments, my condition was already gathering pace, and reached a new height of pain in 2019. I’d had enough, and we banished the fertility options into the Unknown Regions, and I set to look at the options of more permanent pain management options and to establish my own Resistance to the disease.
But then the Covid-19 crisis struck, as suddenly as Order 66 and just as devastating. Because of the initial restrictions, I was unable to schedule some important investigatory examinations last year. In the meantime, I have been experimenting with a cocktail of drugs (no not Spice), but different contraceptive pills, none of which are succeeding in alleviating all of the symptoms.
For example, the progesterone only pill made no difference to pelvic pain and in fact, caused even heavier bleeding and clotting which was intolerable. The combined pill on the other hand is mercifully easing some of the pain, but this is counterbalanced with crippling nausea migraines for 10 days per month with regular pain relief doing nothing to diminish it. The discussion between Bail Organa and Obi-Wan Kenobi comes to mind:
“What in – Kenobi, are you sick?”
“No. A headache. It’s nothing.“
“It’s not nothing. You look like you’re about to retch.” Yup, that’s pretty much how it feels!
The one saving grace of this pandemic has been that working from home has enabled me to hide my symptoms more easily, by having the freedom to take short breaks to lie down etc., without anyone knowing I’m having a bad day. I know that I am no Jedi, and that I will continue to have bad days, but I take comfort in knowing that more is now being done to find better treatments and solutions for women across the galaxy.
As Poe Dameron eloquently once put it: “We are the spark that’ll light the fire that’ll burn the First Order down“.
Together, we can fight for a more equal health care future.
http://starwars.wikia.com/wiki/Main_Page (reference guide for the non- Star Wars fan)
Do go to your doctor if you have any of the following symptoms:
Chronic pain (including pelvic, back and chest pain)
Fatigue/lack of energy
Problems with a couple’s sex life/relationships
An inability to conceive
Difficulty in fulfilling work and social commitments