My name is Milly, and I was formally diagnosed with stage 3 deep infiltrative endometriosis in May 2021. I am currently 21 years old student in Auckland, and was first told of suspected endometriosis when I was 18. I am still waiting for my first surgery treatment, after over 16 months of being on the waitlist as an urgent patient. My story is a long and frustrating journey and unfortunately is shared with so many other women.
I first started my periods at around 14, and nothing was ever too bad until I turned 16 in 2017 when I noticed proper pain and quite heavy bleeding during menses. It was a slow progression, turning into taking days off school whenever my period was due in my last year (2019). My main symptoms at this point were severe pain, abnormally heavy bleeding, nausea, fatigue, dizziness, migraines, and a range of bowel issues. I was always told to just suck it up a bit and taken some ibuprofen and paracetamol, by my family, friends, teachers, and peers. “Yeah, periods can be painful” or “oh I hate when that happens to me it’s so annoying” were the responses I was used to getting for years – I was so confused. Did every single women experience this? Is my pain tolerance really that low? Is this what it’s going to be like for the rest of my life? Am I over exaggerating my symptoms? I found myself doubted by everyone, including myself.
A big turning point for me was November 2019, I remember it all so clearly. This was the first time that I knew something was really wrong. Once again, I took as much over the counter pain medication I could, grabbed a hot water bottles, and prepared myself for the familiar agonising clenching in my stomach and back. Within an hour or two, I was on the floor, struggling to stand up and sick in a public bathroom. The pain medication had zero effect on anything, a scary experience for my 19 year old self. Usually I knew when the ibuprofen worked, it wouldn’t ever get rid of my pain but it always took the edge off. This time, I was in worsening agony. This was also the first time my more telling symptoms started, namely excessive bleeding in vaginal, rectal forms, and in my urine. I could barely breathe through the pain, and could feel horrendous blood clots passing through me and the sheer amount of blood loss. After 3 months of these kinds of periods, I went to my GP. My mum said it would be good to just check, and even if I was overreacting my GP would tell me.
She didn’t tell me that. Something was wrong and she knew, I was not overreacting. She talked to me about endometriosis, and what it could mean. It was so overwhelming, is something wrong with me? What’s going on? What do I have to do now? Am I really exaggerating to my doctor? I got started on Levlen immediately and was transferred to another GP in the clinic. Levlen was a bad experience for me, I was on Levlen for 3 months in total, and bled almost every day. Nausea, bloating, migraines, fatigue, and more. I hated it, but kept being told to wait it out. Why? Why did I need to suffer for those 3 months? I went back to my new GP and told her, I said I didn’t like the side effects and I couldn’t see it working for me. She told me I needed to try microgynon because I need to give it a chance. She said, heavy periods are well treated with this, and I told her it was for endometriosis treatment. She said that it wasn’t, because I likely don’t have endometriosis. I was very surprised, a female doctor making me feel like I was overreacting to womens health symptoms? I did try microgynon, but things did not change. I went back, stronger, and told her again nothing was good. She put me on cerazette. Cerazette was slightly better, I didn’t bleed again for the whole 6 months I was taking it. However, my mood was severely affected, and my energy levels and I didn’t feel like myself at all. I felt like I wasn’t even a person sometimes, and I thought that stopping the pill entirely would be a good choice for me.
I went back to my GP, who told me that I shouldn’t get off the pill, and I needed to get the shot or an IUD. I said I was really struggling on the pill, and she said okay but you need to go on something. I stood up for myself a bit and said I didn’t really want any more medication because I didn’t feel like it was right for me. I was off any hormonal medication for about 9 months in total. When my cycle came back, I was immediately reminded of how bad things were, and was given a codeine prescription for pain. This was better than ibuprofen but just helped take the edge off.
I also want to talk about something called decidual casts that I experienced. This was difficult, decidual casts are very rare and the first 3 times I experienced it, my GP ignored it and told me I was just mixing up blood clots. The pain I experienced with decidual casts is something I can’t even describe, I have never felt anything like it. To clarify, a decidual cast occurs when uterine lining is pushed out in whole chunks from the uterus, essentially going into labour but for uterine muscle lining instead of a baby. I had 3 decidual casts in one night, with the only pain relief being 30mg of codeine. I would never wish anyone to have to experience that pain. It was quite traumatic, collapsed in the bathroom stall of my parents house, sobbing and groaning from labour-like pains, as my body was torturing itself. My GP didn’t even acknowledge this when I told her.
I also want to say that I first presented bowel bleeding and mucus during my periods in November 2019, and my GP consistently told me I must have haemorrhage, but I was persistent that I didn’t, as this only happened during my periods. She said that only happens in severe endometriosis, and I was just confusing myself. As an 18 year old, these conversations were very damaging to my perspective of my health. I felt it was all my fault, I am overreacting and being silly.
In January 2021, I decided to save up and pay for a private appointment with a specialist, as I felt like there was very little trust between myself and my GP. When I went to ask her for a referral, she told me, I was wasting my time, and they were just going to tell me the same thing she was, to get an IUD and leave it.
I ignored this, and went to see a gynaecologist in May 2021. On the spot, I was diagnosed with severe endometriosis through an internal ultrasound. He believed everything I said. This was the first time someone believed me when telling them my story. I told him everything, and was immediately put on the waitlist for a surgery, and given tramadol. I cried a lot that day. I wasn’t crazy. I wasn’t overreacting. I didn’t deserve that pain. I was just ill – and it wasn’t my fault that I was in pain. Finally, a bit of an answer.
There were definitely concerns about my bowel and endometriosis at this point, but he couldn’t see anything in the ultrasound. He told me likely it was further up, but needed to be confirmed in a surgery.
Not being able to afford the $20k surgery meant I was stuck with hundred of other women, waiting to be helped. I was told 4 months would be the latest I could expect to be contacted, I was excited! 4 months came and went, and using tramadol 4 days a month definitely had its problems. Then, I got 2 letters in the post. One letter was dated 2 months ago from when I received it, the other dated the day I did receive it. The first letter was informing me about a scheduled date for the surgery which happened early august, the second letter was informing me that since I didn’t show up to my appointment, I was no longer in the waiting list and was referred back to my GP. They had booked me an appointment, didn’t tell me, then when I didn’t show up, they booted me out. I was devastated, frustrated, scared. I realised how I needed to fight even harder, and push for my own treatment. It didn’t make any sense, why did I need to push for treatment against these doctors? They are supposed to be the ones trying to treat me!
I called the hospital, and was told this is quite a common occurrence, and they will get back to me. Quite a common occurrence – that was a hard thing to hear. I think of all the other women who had this happen to them, the girls, the mothers, the workers, every women who experienced this.
I was rebooked for October, which was cancelled due to the lockdown. Things got worse with my bleeding, and I went back to my specialist. He gave me another version of the pill to take, and told me to get an IUD too. I was very hesitant, this pill also made me more sick, and I did not want to get an IUD because I knew my reactions to hormonal medication are not good. I came off the pill he gave me after a few months of continuous bleeding, and finally made the decision to get an IUD. I refused to go to my GP, she had done physical examinations of me before and was not very nurturing. Whenever I told her there was pain during gynaecological and rectal examinations, she wouldn’t listen and told me the pain was because I was too tensed up. She ignored my bleeding, and I felt scared. I switched to another GP recommended to me by a family friend, and it was one of the best decisions of my life.
This GP was incredible. I was shaking and crying before the appointment even started, the insertion of an IUD was terrifying to me, and I had bad experiences with similar interactions. She listened to me, me, and I took tramadol before the insertion. She got a nurse to hold my hand, and listened every time I said I was in pain. I won’t lie, the IUD insertion was rough. It was similar pain to the decidual casts, but not as long lasting and much more acute. She gave me local anaesthesia to help with the insertion, and she made sure I was okay every step of the way. She believed me, she listened to me, and I trusted her.
Things took a bit of a turn from here, my IUD was not settling well. I had strange bladder issues that I never had before, and had Ben treated for 3 UTIs, even though no infection came back in all my tests. All they found was lots of protein, white blood cells, and red blood cells in my urine tests. I was taken into hospital after I went back for my 4th “bladder flare-up”, and kept overnight. I came out with a diagnosis of pelvic floor dysfunction and concerns about my bladder. I was told interstitial cystitis from my IUD insertion, or the endometriosis had progressed into my bladder wall. They didn’t know. Again, I brought up my bowel bleeding concerns, and was told it was concerning, and to bring it up with my next doctor.
I started to see a physiotherapist for pelvic floor dysfunction, and muscle relaxation with chronic pain overall. This was incredible, and helped a lot with my pain. I got used to how my body worked with my IUD, and re-learnt how to take care of myself. I hadn’t heard anything about the surgery I was still waiting for, it had been months. I called, and they told me that I had just been sitting in processing for the surgery. They said since I called I reminded them to put me on the list – otherwise they would have forgotten. Again, having to fight for treatment.
I got a call in April that I was scheduled to go in for my pre surgery appointment. I was excited! Almost one year of waiting! I got everything done, made sure I had everything ready to go and I new everything I could. I was asking questions, I knew the plan, I had done a lot of research in the surgery, bought books, and spent hours reading other womens stories. I prepared everything, I took time off work, arranged things with my studies, and had everything packed the night before. I was to,d to be in the hospital at 8am. 7am I got a call, cancelling my surgery. I was heartbroken. Frustrated. Again, I felt like the system was against me. I cried and cried, embarrassed I had to tell everyone it wasn’t happening. I got a call saying i was rescheduled for 2 weeks from then, this time I was determined to make it through!
Then I got covid. That is a whole other story, despite being fully vaccinated and boosted, careful, no pre-existing conditions, I managed to get hospitalised twice for covid and get long-covid. My surgery was cancelled the day before. Updating my file with pericarditis, long covid, and shortness of breath meant I was blacklisted from surgery for a while.
I jumped through all the hoops to make sure I could go back in for my surgery, appointment after appointment, taking extra care to be safe and recover to my best. I have now been scheduled for a surgery on the 8th September 2022. This is the third attempt. I have brought up my severe symptoms time after time, and told to bring it up to the next doctor. I have now had to have conversations with my doctors about bowel cancer, carcinomas, ovarian cancer, and other fatal diseases that my symptoms match. There have been no formal investigations. The health system is not set up for good doctors to help, but it is set up for bad doctors to ignore. I look back sometimes and realise how much I have had to defend myself to the people who should be taking care of me, I have to make them listen, I have to shout to be heard.
It’s not just the doctors, having to explain to people why it’s a problem can be difficult. My fertility as a young women is often peoples main concern when I talk to them. They care about my egg preservation more than my quality of life, pain, emotional health, and physical health. They are sad when I tell them, but not for me, for my eggs. I am prioritised as a child-bearer before I am a person. It’s hard. And it’s the same story for every woman.
I’ve been able to raise awareness for these shared issues in my own life, my friends and family have a much better understanding of it all now that so much has happened. I am involved with writing womens health for the university of Aucklands scientific publishing journal, and I love being able to share and uplift other women who have journey.
Apologises for how long this story is, but I hope if someone reads it they can understand a little more of what we are mean when we have to fight the disease, and fight the system and the same time. I wish I could have told my 14 year old self, my 17 year old self, my 19 year old self that her pain was always real. That she didn’t deserve it, it wasn’t a punishment or her fault. It’s just a part of her story now.