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Endo: Like piecing together a jigsaw puzzle from a nightmare

Trying to determine how long I have had symptoms of endometriosis evokes platitudes like ‘how long is a piece of string?’, but certainly for as long as I have been menstruating, I have been suffering. Whether it be extremely heavy bleeding, incapacitating pain, headaches, weakness and fatigue, iron deficiency, and pain with sex; the signs and symptoms have always been there.

Since about a year into getting my period around age 12, I had been semi-regularly asking my family doctor for advice on why my periods were so troublesome. His answer always equated to ‘some women are just unlucky’, and that was the end of that. After some years of pushing, he recommended that I begin taking Naproxen for a day or two prior to, and throughout, my period, to stop the production of prostaglandins which commonly cause or exacerbate period pain. Being a young girl, I was never very good at tracking my cycle, and so usually missed the opportunity to get ahead of this pain with Naproxen, as my period would arrive before I had the chance. However, Naproxen has been my saving grace over the years, and remains the only means I have of reliably managing my pain.

Sometime around my 14th birthday, I was put on hormonal birth control to attempts to control persistent acne. While this didn’t work, I stayed on hormonal birth control of varying sorts until I was 27.

Though my periods were always consistently hellish, and I frequently missed school, work, and social commitments due to pain and other symptoms, years of being silenced by doctors telling me ‘this is normal’ meant I soon gave up on reaching out for medical help, and just bit the bullet every period.

I began seriously tracking my cycle and any period related symptoms around age 24, and began to notice my symptoms started getting more scattered, popping up in the middle of my cycle, as well as seemingly anytime they liked, with no rhyme or reason.

After years of increasingly poor mental health, making every other attempt to improve it from therapy, to medication, to changes in lifestyle, I realised it was possible that hormonal birth control was adversely affecting my mental health. I decided I owed it to myself to see what life was like off hormonal birth control for the first time in my menstruating life. As a young single woman, I still required birth control, so I had the Paragard non-hormonal IUD put in.

The trauma of my first IUD insertion cannot adequately be described. I was warned there would be some ‘brief, minor cramping, lasting no longer than 15 minutes’, and that as I was already a pro at coping with extremely painful cramps, I would likely deal with this better than most. I was completely unprepared for the brutal, excruciating pain of my IUD insertion. Lying on the gynaecologist’s table mid-insertion, I remember thinking the pain was so bad that I felt I would simply disintegrate into stars and cease to exist. I have an incredibly high pain tolerance and almost passed out, weeping uncontrollably and seeing stars.

The gynaecologist who did the insertion seemed inconvenienced and taken aback that I was in such extreme pain, and I was shuffled out of her room in minutes. I paid for my appointment through tears, and wasn’t even offered a tissue by the frosty receptionist as I took to one of the waiting room chairs after failing to make it to the doors to catch a taxi. I called my partner and couldn’t speak, only managing to weakly squeak out ‘help’, followed by a txt to please urgently collect me from the clinic.

The barbaric practices of un-anaesthetised IUD insertion in nulliparous women is another story for another day, but must be mentioned as thus begun the start of my experience menstruating without hormonal birth control.

In the year that followed, my pain and other symptoms accelerated with alarming speed and severity, resulting in my partner taking me to the emergency department after a day of increasingly bad pain that left me unable to stand up straight or walk properly, and complaints that it felt like I had a bowling ball pulling my organs downwards.

After hours of waiting, the first doctor that assessed me told me I had ‘suspected appendicitis’, and that I would need to have surgery for it to be removed as soon as possible. Distraught, confused, and scared, I was admitted to hospital to have my first ever surgery at 28.

There was a delay of some days between being admitted to hospital and when my number was eventually called for surgery. During this, a continuous stream of surgeons, specialists, doctors, and nurses – rarely ever the same person more than once, tested me for numerous things without ever landing on a concrete diagnosis.

Eventually I had my laparoscopic appendectomy, and once I was awake enough from the anaesthesia, I was told my appendix was successfully removed …but was found to be completely fine. My relief soon turned to confusion, as I was then told I had severe, Stage IV, deep infiltrating endometriosis. With bonus ‘frozen pelvis’ (which translates loosely to having all my organs stuck together with sticky scar tissue so they can’t adequately move or function properly)!

I was devastated. A couple of my close friends had endometriosis and I only knew of it by name, certainly I knew nothing of the far reaches of its destruction, but I understood it was serious, it was chronic, and had no current cause or cure.

I was eventually discharged and referred on to local endometriosis specialist surgeon, Dr Lakshmi Ravikanti, who also runs a fertility clinic. My partner and I met with her to discuss in further detail the full scope of what we were dealing with, and were both in tears by the end of the meeting. This disease was simply so merciless and life ruining that we found it a challenge to find any positives, and left the hospital that day feeling drained of our usual optimism and completely defeated.

Due to the severity of my case, I was placed on both the public and private waiting lists for surgery.

The almost two months that followed were some of the most mentally and physically challenging I have ever experienced. My thoughts were consumed by despair about potential infertility and the guilt associated with this in relation to my relationship, as well as what looked like a lifetime stretching ahead of me of surgeries, pain, and suffering with no reprieve, spiked with a deep sense of horror at the nightmare growing inside of me that I had no means to remove or treat.

I subsisted on pain medication, my faithful Naproxen, hot water bottles, and bed rest. I could no longer walk unassisted at this stage, and had resorted to using a piece of driftwood I’d picked up on a beach the previous summer as a makeshift walking aid.

Battling not only the health aspects of endometriosis, I now also needed to ensure that the $26,000-odd worth of surgery that I required would be covered by the basic ‘when s*** hits the fan’ health insurance policy I had taken out on a whim the year before. This was the biggest and most important learning curve for me, and something I always try to particularly stress to others I speak with who have symptoms but as of yet no diagnosis for endometriosis. As it generally requires multiple surgeries throughout a patient’s life, and most people don’t have $26,000 burning a hole in their pocket, I encourage anyone who is able to take out a basic surgical cover health insurance as soon as they possibly can. This protects you from being left out in the cold due to a late diagnosis of endometriosis becoming a ‘pre-existing condition’, which is then not covered, meaning you must rely on the public health system for any future surgeries.

I had my surgery, which at a whopping 4 hours, was much longer and more extensive than expected, and required not one but two surgeons. Dr Ravikanti reported that my surgery was a success overall, though that I would probably always have some level of pain. After a life to this point filled with pain, I felt cautiously optimistic that I could cope with this. Plus, some 16 years worth of endometriosis growth had just been removed, which was of immense comfort to me.

I also reluctantly had a Mirena IUD placed while I was in surgery, in attempts to curtail endometriosis growth, and manage my cycles and symptoms. I was nervous about venturing back into hormonal birth control, but personally found it a great match for me and would use it again in future happily.

One interesting symptom of note for me, was that prior to surgery, for about a month or so, I’d been getting these random pulling pains on the bottom tip of each rib cage that felt something like light ‘stitch’. Nothing crippling in comparison to my other pains and symptoms, but enough to make me wonder what was causing it. When Dr Ravikanti visited me just prior to me going into the operating theatre, I thought ‘screw it, trust your gut’ and mentioned it to her, requesting that she take a look at those areas while in there and if there’s anything there to please remove it. She agreed, and away we went.

Cut to those several hours of surgery later, Dr Ravikanti comes to visit after I’m out of post-op recovery, and confirms she did indeed find endometriosis growth exactly where I described! This amused me that (as per always) I was doubting whether the pain was real, whether it was worth bringing up, etc, but it was exactly what I suspected it was, and has served as a stern reminder to trust my gut and speak up if something is concerning me. There are no ‘silly questions’ and I need to remind myself that expressing concern to a trusted medical professional is never ‘wasting anyone’s time’ because I really struggle with this, and suspect many others with endo do too due to the gaslighting nature of the journey to diagnosis etc.

The growth that was found equates to ‘diaphragmatic endometriosis’, which unfortunately due to its location could not be excised as the rest of my endo had been. The tissue it was growing on was too delicate, and excising it would risk a tear that would be dangerous for my health, so it had to be burnt off or ablated instead.

On returning from hospital, I also experienced severe post-operative depression, which I was not warned about by any of my medical team. I’ve since discovered this can be related to how long a patient is under general anaesthetic for, with each hour accounting for roughly a week of depression. This was in line with my experience of roughly 4 weeks of crying jags prompted by nothing in particular, consistently low mood despite a deep gratitude for my health and survival, and a growing frustration at my continued lack of mobility and need to rest.

I was off work for a full 3 weeks following my excision surgery, and needed that time and then some to feel any semblance of normalcy. Once I began feeling a little more like myself, able to comfortably walk around the block, more able to do my regular yoga practices, and when my first post-surgery periods passed with manageable cramps and less bleeding than usual, I felt an immense sense of gratitude for my body’s incredible ability to withstand trauma and heal from huge damage. Grateful that I have health insurance that lessens the financial burden of this condition. Grateful to have a beautiful support network, and for my wonderful partner who, through months of tears and fears for the future, has reassured me constantly that no matter what the future looks like we will weather it together. Grateful for the dedication of the surgeons and endometriosis experts who are constantly pushing for proper care and research to battle this condition and improve the lives of those with endometriosis.

Since surgery I feel I have my life back, and I feel that should I need repeat surgeries, while I’m not excited about them, I can get through them as required.

I have also since had my Mirena removed in order for my partner and I to begin our fertility journey. Due to the advanced nature of my condition, I have to be careful to manage any expectations as we don’t know yet whether I’ll be able to carry a child. While it’s sad to have to shut down any excitement or optimism about potentially having a child, I’m interested to find out what my situation is now that I’m healed from surgery, and am grateful for my health either way. Realistically many people struggle with fertility, whether suffering from endometriosis or not, so I try not to tie the two together too much.

Knowing what I know now though, I do wish that I had thought more deeply about whether I wanted children when I was a little younger, and potentially had some testing done earlier, but like the saying goes – ‘hindsight is 20/20’.

I have leant heavily on online support forums and communities for endometriosis since my diagnosis, and credit them with maintaining my sanity and fighting isolation in these struggles. I read everything I can about endometriosis now, both personal anecdotes, and scientific papers, and it has become a passion of mine to support others with endometriosis, raise awareness, and push for good research into treatment and care of this condition that affects roughly 10% of individuals that menstruate.

I could continue for a long time on the fascinating information I have learnt about endometriosis, and the reproductive system as a whole. As the title indicates, I have begun to think of endometriosis and the way it impacts the body in myriad ways as a jigsaw puzzle from a nightmare. Though the inspiration for it has not been pleasant, it’s immensely gratifying to begin to form a holistic understanding of my body, and my reproductive systems in particular, more comprehensively. I find this takes the ‘scary’ out of the often severe pains and discomfort we as endometriosis patients experience, allowing us to navigate life with chronic pain with a certain reassurance of control that wouldn’t otherwise be present. We know our bodies, and we know we can weather any storm we need to.

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