My Story: Endo and Me by Nicole Ramsay

It can be a difficult thing to reflect on what the journey looks like, and when my Endometriosis story really began.. Most would assume it starts like most typical stories, a start, middle and an end. However my story begins in the middle as I would soon realise there is no ‘end’ to a journey that constantly evolves.

Only a short time ago, January of 2023, I found myself increasingly ill and with a sharp, stabbing pain that felt like I was being cut open with hot razor wire. Given that I had suffered from a lot of intense pain which led me to be bedridden, this was something I had not experienced with this level of pain being a 10 out of 10 the worst pain imaginable. I found myself in the ER, waiting hours to be treated, only to be doubted by doctors that anything was wrong on arrival. They decided before they dose me up and send me home to do a quick internal ultrasound. This is where they discovered I had had a 13cm, tennis ball sized chocolate ovarian cyst rupture. A cyst I had no idea I even had, and a term ‘chocolate’ I had also not understood. Within the next few hours I was rushed into Emergency Laparoscopic surgery to stage off internal infection and do a ‘discovery’ to figure out what else was happening as the only way to figure this out was to operate.

Post surgery whilst doped up, in pain and completely devastated thinking I was going to lose one of my ovaries given the extent of the size of the cyst - I was given an A4 piece of paper explaining to me that I had now been diagnosed with Stage 4 Endometriosis with an obliterated pelvis. This ‘discovery’ operation confirmed that it was serious enough that it required additional surgery to remove the cyst and the rest of the Endometriosis that had taken control of my pelvic organs. Bladder, bowel, liver, uterus, just to name a few, all tied to what I visualised to look like a black tar. Despite this rather traumatic experience, and my first time as a patient at 35 years old, I was completely blind sided. I felt confused, angry and completely alone. What does this all mean, and why am I only finding out about this now!?

Now, I’ll rewind to age 14, like any typical angsty teenager with hormones controlling the majority of the emotions.. It had disguised the fact that what I was experiencing monthly being bed ridden from pain, to being considered ‘normal’. The family GP put me on the pill and sent me on my way. Fast forward to my early 20’s and I had now started to get other symptoms. Just to name a few; dietary intolerances, skin allergies, depression, anxiety, fatigue, muscle tension, headaches, constant illnesses, along with a new fun diagnosis of IBS after doing every test under the sun with multiple GPs. Even in that early stage, I felt unsupported and doctors threw any chemical based medication at me - so took my health into my own hands whilst taking the handful of prescriptions I was told I needed. I cooked everything to a blood type, tried elimination diets and learnt to cook any meal with gluten and dairy free options. Back then, you had to make your own gluten free bread/everything...

Life continued this way with additional doctor appointments with abnormal results from pap-smears which had to be done every year instead of every 4 due to the undetermined nature of these results. All the while, never once had anyone ever mentioned the word ‘Endometriosis’. Not a single friend, relative or anyone I knew had this or even popped up into conversation. Sex Education in highschool didn’t exactly give us female health and hormonal education.. It was more an excuse for the boys to write funny questions the teachers had to answer anonymously.

As I got older, I started getting worse pain, worse fatigue, illness, with the worst being the brain fog and anxiety attacks. Unfortunately I had always had high level or corporate stressful jobs that don’t exactly allow for space to have a sick day. You would have to have a limb cut off to call in sick.. So I had just been told I needed to make lifestyle changes. I did/do Pilates, Yoga, eat clean and healthy, etc.. I still lived everyday without knowing anything was wrong so I just carried on, still worked normal hours, and enjoyed life as best I could. I just had good days, and bad days.

Being self-sufficient and supporting myself financially was always difficult but needed. To do this meant always working hard and being the non perfect perfectionist.. I was about to learn the hard way what this looks like when you have a disease not medically recognised as a debilitating all life consuming condition. As you would also assume, a woman over 30 starts to panic about their fertility and what this looks like. When you come to accept this may not be in your future despite how much you want it, it also feels completely different when this decision is taken out of your hands to make.

Ok, back to January 2023. I was feeling lost, and had a complete lack of understanding as to what this meant for my future. I was put onto a 6 month waitlist for the ‘big surgery’ for the excision of the Endometriosis. In my mind, I figured, OK I have 6 months to Google everything I can find, speak to researchers, workout like a crazy person, get as fighting fit and healthy, join support groups, connect with other people going through was I was going through, follow 50 different Insta pages with anything that had to do with Endo, see psychologists, naturopaths, dietitians and read up on how to cook Endo friendly foods. Who knew?! There is actually an Endo Diet specific to anti inflammatory ‘yes’ foods. Things I wish I knew 20 years ago! I stayed positive, I was open with my work and HR who were fortunately very supportive, and really cemented my support network of friends and family. The counselling really helped me in this time, as I was still finding the emotional side of this all quite overwhelming. Interestingly enough, I felt better than I ever had in those last 4 months leading up to my surgery as I had ever been previously. After the surgery in January I was prescribed a Progesterone based pill instead of the other one that was filling my body with Estrogen growing the Endo - which goes to show the importance of these hormones that any GP can hand out like candy without regulated patient questionnaires etc.

Finally the big day came July 2023, only 6 months later from when this all began. The operation took 10 surgeons, and 9.5 hours in theatre. They successfully removed 100% of the Endometriosis, the large tennis ball sized cyst and a portion of my lower bowel as the lesions had unfortunately infiltrated my lower anterior section.. This resection although successful at the time of operation was soon to become what landed me the 4 weeks in hospital. 3 days of excruciating pain post surgery, unable to walk, shower myself, and on a liquid only diet was not fun to say the least. It was however strange the immediate relief I felt.

Although in immense pain, I felt less heavy and had mental clarity. That was until the evening on the 3rd day, I woke up in a fever, abdo pain, tachycardia and vomiting. That evening I was jabbed with over 20 needles with countless blood tests and a quick trip to the CT scan room - to confirm that I had a serious internal infection due to an anastomotic leak. Seems the staples they had fused my bowel back together after the resection left a small hole they were unable to locate on the scans. That next day they prepared me for another surgery… This was my worst nightmare.

Fortunately, my body fought hard enough in those 24 hours just enough to have my infection markers come down to a point that I was able to go onto conservative management, on a feeding tube (PICC line) nil by mouth for another 3.5 weeks. (The PICC line didn’t take the first time so they needed to give me fluids to expand my veins to try again the next morning - and give me valium). They tell you it is an easy and painless procedure but not in my case... This was going to be 4 weeks without an actual meal.. But I never complained, stayed positive, made jokes with the staff and got to know the wonderful nurses personally. I used my chocolate gifts that I couldn’t eat as hospital currency to bribe the orderlies when taking me for more tests. It was tough but the highlight was that first shower I could do myself and to wash my hair, life became a day at a time with little wins to get me though. Side note: did all of this without Opioid pain medication as I react badly, therefore I was on your basic IBuprofen and household Panadol

The doctors and staff were all amazing and couldn’t be more appreciative - along with the heightened appreciation of all my amazing friends and family. They made my hospital room look and feel like a bedroom with books and flowers. After I was discharged, the next stage of the journey started. Low fibre diets, minimal exercise, work life management whilst still in recovery. This was harder than being in hospital. When living with what was a ‘different body’ and a new life, I was navigating what life was now. Learning what my new limits were and mentally processing the trauma. Everything felt different, and still does. But what is normal?! In that one year I have travelled Europe, getting my physical strength back, have a new community of amazing people through online support groups, an understanding and clarity of what things affect me and why, along with new learnings from being educated on so much I never would have known! The experience has encouraged me to live happy and healthy putting that before anything else and that when times get tough, the importance of having your support people who mean the world to me and will be forever grateful.

I’m sharing this only after one year, as I believe the statistics surrounding this disease are scary. 1:10 was the average but recently closer to 1:7 or 1:6 women are affected. None of this being taught to young women, the GP system outdated and the misdiagnosis due to personal opinion of what a normal periods or pelvic pain should be. The fact a Gynecologist is someone you go to if you are referred - not because it is in your family health tool kit for the basics. In my life I’ve had countless scans, doctor visits, even trips to the ER to be told it is something else or I’m overreacting. It is my hope that by sharing only the tip of the iceberg of my story, that it may inspire other victims of this disease life can get better, and educate others that this is so common yet so serious if left too late. I had to do much of my own research to find out about my disease and understand it. To not feel alone and find others I could talk too. I’m advocating for change for the system to do better and to spread awareness of the impacts this has on the life of those suffering from it, and the family, friends and coworkers with the ripple affect of Endometriosis.