'M.E. myself and I' by Anna Redshaw

Content note for childlessness, mention of pregnancy

Please allow for typos or mistakes, more so than usual. My sentence construction and word finding has taken a knock with the increased fatigue and cognitive dysfunction. 

It’s February 2025 and I’ve just had a laparoscopic hysterectomy and oophorectomy. This has been a very long journey; a multifaceted one. So let’s get you up to speed.

It was about 2015 when I realised parenthood was not in my future (despite having a partner) because of the impact M.E. has on my life. I asked a GP about sterilisation a few years later as a permanent form of contraception. The thought of an accidental pregnancy was truly terrifying because I could not raise a child, no matter how much I wanted to. The GP was confident that there would be a reluctance to sterilise someone still in their twenties.

I had been on the Progesterone only pill (due to migraine with aura) as a teenager and again in my mid twenties. It didn’t ever stop my periods. My periods were always a problem. I remember one time at school, bleeding through my clothes and onto a chair. But things got a lot worse when I hit 30. The pain became the kind that almost made me lose consciousness. It woke me in the night. The bleeding lasted a lot longer than the standard ‘up to 7 days’. The longest period I had lasted 42 days. I lost a lot of blood, and ruined clothing, furniture, and even a carpet in the process.

I was diagnosed with Adenomyosis in late 2021 via ultrasound. I noticed what came to be “probably PMDD” (Premenstrual dysphoric disorder) around the same time. The week before each period was, for want of a better word, horrific. I was not myself; unhinged and hysterical. If I was laughing, it would switch over into sad uncontrollable sobs and then back again with no warning and no ability to control it.

In February 2022, I was seen by a gynaecologist and asked for a hysterectomy. I had started counselling in early 2019 for The Baby Thing when I struggled with a family member’s pregnancy, and so hoped this would help my case for such a life-altering surgery. But the hysterectomy was refused due to the severity of my M.E. and my very limited mobility.

Willing to try anything, I had the mirena coil fitted there and then instead. The coil reduced my bleeding dramatically, and gave me a 28 menstrual cycle for perhaps the first time ever. But it did not stop the pain, and it took 12 months to settle. 

I went back to see my consultant in early 2024 because things were just not okay. I was put on to Zoladex in April 2024 to ‘turn my menstrual cycle off’. My consultant stressed the need for HRT, to protect my bones from the menopause, and so I was put on oral HRT. Even with the coil and the Zoladex, during what should have been my period I still had a couple of days of bleeding in the latter months of having it. That’s an out of sorts body and an out of sorts menstrual cycle.

After months of Zoladex, in August 2024 it was confirmed that I could indeed have a hysterectomy for the adenomyosis and an oophorectomy for the PMDD. I was elated! A very strange thing to be so happy about. I got my surgery date in October 2024 for February 2025.

My pre-op went very well; perhaps the best medical appointment I have ever had. Then three days later my surgery was cancelled by an anaesthetist who refused to take my case* because of some of my M.E. symptoms, notably paralysis and loss of speech. That was undoubtedly the hardest, bleakest week of my little life. A week later it was all back on as originally planned, thanks to my husband, consultant, and a hospital secretary advocating for me.

On the 2nd February 2025 I had the surgery and it was a complete success. I am now in Surgical menopause at the age of 36 as my ovaries were removed. My HRT prescription has been changed to patches, and I will need to take HRT until I am at least 51.

Although recovery is miles and miles better than we’d feared or prepared for, it’ll be a good while until I am back to my pre-surgery baseline. I may not get back there as so much has changed for my body.

We’ll get into the specifics of surgery and recovery in other posts, so watch this space.

*The anaesthetist refused my surgery at this particular hospital, despite assurances from my pre-op nurse and consultant that everything would be okay. My family and I believed this smaller hospital was the best place for me to be admitted to because of my M.E. According to the anaesthetist, I would need to be re-referred to another consultant, face being on the women’s ward (around pregnant women which is hard for me with my feelings towards my childlessness), in the large city hospital. I would need to begin the process of explaining M.E. and my access needs all over again, in a place where they likely wouldn’t have been taken into account. You wait over a decade for M.E. to be taken seriously and then it is at the wrong time and for a simple misunderstanding.