Let’s Chat with Aimee
by By Aimee Long | @endomadness
*Content warning: this piece mentions self harm / suicidal ideations and may be triggering for some readers
Hey I am Aimee from the UK.
So, 1 year after getting engaged, the endo monster got me. I look back at 2019 me and how I long for her, no pain, no aching, not feeling so lost and not feeling like I have to rush through life. Not being angry, hurt and down. It's only taken me 3 years to mentally forgive myself, it's out of my control and the world has a plan for me.
Being now 28, all my friends already have kids or my social accounts are just full 'we are having a baby' which is so testing to you as a person. I'm happy for them, I wish them all the happiest, but 1% of me is like why not me? What did I do wrong? I want what they have! Or I think about maybe the time I can tell my fiancé we are having a baby. But it just feels so impossible.
In 2020 I had my first laparoscopy, at the height of the pandemic so I got sent to a private hospital (I live in the UK so would have been NHS / public hospital) they stated “there wasn't enough endo to burn away”, so they left it, but my left tube was completely blocked and put in the mirena IUD / coil.
A few months later I removed my coil, as my partner said he would love to be surprised and not know we were trying for a baby so that's what I did. I took all the pressure of every month sitting on the loo and crying. As I didn't have the coil anymore, I started getting blood clots, pain so bad I would fall to the floor, ended up in A&E three times and once even calling an ambulance, which after everything, I was just given co-codamol (panadol and codeine) and referred back to the gyno team.
My first appointment since my operation in 2020 was about 6 months after (so no check-up). It turned out my hospital didn't even know I had this operation, no notes were sent back to my gyno team.
I was told basically they couldn't do anything for me as I wanted to have a baby. So by 2022 I just had enough. They put me on zoladex, the menopause drug for two months. This was then extended to 11 months due to the treatment not working the way it should. Also my doctors not comparing my MRIs in Feb to my latest in November. This drug is unbearable, I lost myself. For four months of this I didn't have hormone replacement therapy (HRT), which made me feel like I was going to hurt myself. I was driving in my car and all I could think is if I do not stop, I'll be out of pain. I knew that these thoughts weren’t normal, so I called my mum crying and then that same day we called the hospital. I said I needed an appointment, but didn't get one for a month. As soon as I told them, what was happening, I went on HRT. The HRT helps but I still wasn't me. I gained weight. My skin was horrid. My sex drive was nowhere to be seen. I was snappy. I just wasn't happy, but on a positive I wasn't in pain.
After 11 months on this horrid drug, that I have mixed emotions about , I had my second laparoscopy, this year in 2023. This time on the NHS (which is now falling apart at our very own eyes and is very sad). They burnt away my endo that was there and proceeded to tell me my left tube is blocked, which I already knew (from my last lap) so I asked what did they do? … They did nothing as they never got me to sign paperwork to remove it. They asked me to go back on birth control, due to the risk of ectopic pregnancy and said that I will need another operation at some point to remove it. After nearly a year on hormones, I said nope I can't do birth control and I now feel amazing (no endo pain YET). I was sat in my hospital bed crying saying “I told you this”. Their only response was “We were never given the paperwork”. I questioned them and said “I told you I had the operation in 2020 and told you guys the outcome” and shock — they didn't really have anything to say.
So now I'm 28 years old, waiting to have my first period so I can freeze my eggs. The hardest part I have found is not what I've been through but what I have put my fiancé through and my family. I may never make him a dad, or my parents to be nan and grandads.
In May 2023 my mindset is in a completely different place. I've accepted that it may not happen the natural way. I may put on weight. I may get pain. I may have to go through IVF. I may not be a mother. But what I will be is loving, caring and never take anything or anyone for granted, as tomorrow isn't guaranteed. I've stopped the pressures of what should be or could be and just focusing on being happy and stop trying to control every little detail. The world has a plan for me and I just have to accept it.
Thank you for reading this, it's good to express to people who understand and I hope all us endo warriors find peace and harmony with the cards we have been dealt.
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