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Guest Post: Ainsley’s Endo Story

Guest Post

Ainsley's Endo Story

by Ainsley Clee-Harris

Ainsley shares her story of heartbreak and hope as she fought to find answers and support for her chronic endometriosis pain and recurrent pregnancy loss. 

The battle to be heard and diagnosed

For as long as I can remember I have been in chronic pain. Throughout highschool I missed weeks at a time with excruciating pain, heavy bleeding and migraines.

I was lucky enough to have a very supportive mother. With many women in our family suffering from the same issues as myself, my mother took me seriously – but unfortunately, a lot of doctors did not. My mother and I would go to the GP and she would be told “she is doing this to get out of school”, “there has to be other reasons she is not wanting to leave the house” or “we will put her on the contraceptive pill and that will solve everything”. Luckily for me my mother would not listen and kept fighting and taking me to new doctors to try and get someone to listen.

I suffered from the age of 14 through to 20 trying pills, pain management, the Implanon and even teas and before a new doctor said this was not made up and gave me a referral for a gynaecologist – little did we know it was just going to get more ridiculous.

My first laparoscopy

My first gynaecologist was a middle-aged man who was rude and not very good at listening to his patients. He told me that there is no way I had endometriosis and that I should just go on the pill again. But due to being a migraine sufferer, there were risks associated with being on the contraceptive pills, so he then said I should look into getting a hysterectomy if I didn’t want to be in pain anymore – I was 20 years old!

I went back multiple times, had internal ultrasounds (where he told me he could see nothing to suggest endo) but we eventually got him to agree to put me on the waiting list for surgery.

My date finally came up and I had my first laparoscopic surgery – where he found endometriosis and cysts. It was supposed to be a 45-minute scheduled surgery, but I was still in there hours later. It was 6 hours before they came and told my mother what had happened. We never saw that gynaecologist again, didn’t receive any updates or anything after my surgery, and I had a reaction to the anaesthetic, so it was pretty traumatic.

Finally, a diagnosis

I was then told by another doctor at the hospital they found stage 3 endometriosis and removed it from my uterus, fallopian tubes, bowel, bladder and kidneys. At that, I burst into tears because finally there was proof and they had to believe me! 

I had a good six months after that. My migraines had settled and period pain was manageable, but then it all went south in my private life. I had a bad boyfriend and was physically and mentally abused, but I somehow got a miracle through all the bad and fell pregnant. I decided to leave my abuser and I ended up losing my baby.

My second laparoscopy 

My pain started to get worse three months after my first “normal” cycle. (Normal isn’t a word I like to use because for me I never had one that anyone would deem normal). I had somehow managed to meet the love of my life and he encouraged me to continue to get help for my pain. In the next twelve months, my mother and partner were questioned at the local hospital about whether I was addicted to drugs, crying for attention, lonely, or trying to end my life. It wasn’t until one doctor turned around and told my mother “you should have raised her better” that a fire started back up inside of me.

I sought out another gynaecologist, This one was two hours away and highly recommended, but being a private practice it was quite expensive. She was lovely and so incredible, she was aware I wanted children so put me on the waiting list for another surgery, and I got in with a cancellation. She found stage 2 endometriosis stage and cysts on my ovaries.

Starting fertility treatment

I then began fertility treatment, and sadly we were not successful. We tried to just live life and work, and decided if it was meant to be then hopefully it would happen. I ended up surprisingly falling pregnant but unfortunately ended with another loss.

I was taken to a hospital an hour away for scans and was bawling on the phone to my father, as I was put into a maternity ward and I could hear babies crying and mothers settling their little ones. I was saying “I can’t be here, I can’t! It’s not fair”, when a nurse walked in and told me I shouldn’t be so ungrateful as I was getting health care when others weren’t so lucky. I left the hospital a different person, and I was going to be stronger.

I went off all pain medication and tried natural methods, as well as started a healthier lifestyle. It was so hard.

Third time lucky

I sought out another gynaecologist that I was told about and he really changed my life! I walked into my first consultation and said: “Don’t beat around the bush, tell me straight because I know I have endo and I want a family and I need your help”. He did an internal ultrasound and saw that I was pregnant, but due to my likelihood of an unsuccessful pregnancy told me to not get my hopes up. I unfortunately miscarried a week later. We did blood tests and I was put on a waiting list – and then Covid hit!

He was such an incredible man that he did all his public surgeries pro-bono at a private day surgery unit, as all reproductive treatments had been deemed “elective surgeries”. I had lost my job due to Covid, so we went to my parents and they helped with getting money organised to pay for the day surgery stay and anaesthetist.

Afterwards, at my check-up, he told me he found stage 3 endometriosis, adenomyosis and fibroid tumours. He said to do everything he told me and he would get me pregnant in three months. I was sceptical.

Month after month passed and we were heartbroken. But on my third round of fertility treatment, I fell pregnant and we got our rainbow!

I’m now 28 and we are about to start the process again to try and have a second child. 

Unfortunately, stories like Ainsley’s are all too familiar. That’s why we’re fighting so hard to improve endometriosis care for everybody. No one should ever be made to feel crazy or have to wait YEARS just to get a diagnosis and treatment, especially when endo is so common that it affects 1 in 9 women and people with a uterus. Our annual Walk4Endo fundraising event aims to raise money and awareness for endo research, and we’re constantly looking at new ways to improve things for all the endo warriors of today and generations to come. 

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Guest Post: Menopause Reflections – by Jadie Hunter

Jadie Hunter
Jadie Hunter

Guest Post

Menopause Reflections

by Jadie Hunter

Finally, menopause is out there on social media, and it is no longer a taboo subject – remember, it impacts half the population.

Menopause is not a sprint, it is a marathon, and as a runner, I know all too well how to prepare for a run like this. I am only 18 months in and already thinking when will I cross the finish line?

The start of medically-induced menopause

My menopause journey started the day of my hysterectomy. Headfirst, no natural leadup with perimenopause, just straight into medically-induced menopause at the age of 40. It has been a complex journey; I’m having to relearn and be in tune with my body. As a long-time sufferer of endometriosis, I got to know what my pain, flare-ups, cravings, and moods all meant.

Unexpected side effects of menopause

Menopause means a time of learning, growth, and change. It is uncomfortable not knowing how your body is now working and what various niggles here and there all mean. No one tells you that your eyes will no longer lubricate the way used to and that you will have to use a moisture gel, or that you enter the world of bone density scans and mammograms. The eyes not lubricating has taken me by surprise and hit me the hardest of all, for some reason that I’m still exploring, and these days a tube of eye gel comes with me everywhere.

As strange as this all sounds, I do miss having my period. It was that commonality, a way to bond with girlfriends over period pain and chocolate cravings. Now, being the first in my circle of friends to go through menopause, it can be isolating. Trying to explain a hot flush, chronic fatigue, and brain fog to someone who hasn’t experienced them makes it hard to relate, especially trying to explain what a hot flush is like in the dead of winter (no it doesn’t keep you warm when it is cold outside).

Menopause isn’t all bad, as I said earlier, it is a time of regrowth, learning, and reflection. A time to take stock of my life and figure out what is next. So I went back to university and decided to take on the masters degree I always yearned to do but held back due to my endo. It is not easy juggling a masters, full-time work, and menopause (that sounds exhausting just typing it). There are times when I am completely exhausted and want to sleep, yet an assignment is due, or it is Monday and I need to be at work after an entire weekend spent studying. Chronic fatigue and brain fog is real. At one point I was so overwhelmed with chronic fatigue and I was exhausted and had a heavy workload, so I reached out to an academic for advice on how to manage it all… their advice was, to get a good night’s sleep. If only it was that easy! I have learnt to pace myself and listen to the body. If that means I cannot study after work and I may only spend 10 hours a week on it, then that’s what I must do. I can only mange to do what I can each day.

My experience with Menopause Hormone Therapies

Experimenting with different Menopause Hormone Therapy (MHT) approaches has meant that I am now a little closer to understanding the changes that are occurring in my body: 

The patch heightened my allergies, and after 7 days of wearing one I would have to apply cortisone cream straight away. 

The tablets are an easier option, but let’s be honest, who wants to take a multitude of tablets each morning? It’s hard enough remembering to take my calcium, vitamin D, collagen, and iron each day! (And even then, I can forget.)

Thank goodness for the hormonal gel! It’s easy to remember and I just use in-between applications of the many serums for my face each day – I line them up in order each morning and all I can think is how many products do I use every day just to maintain the youthfulness, I am vain!

Final thoughts

As a runner, I know how long a half marathon will take me, and that I have all the time in the world to work through the next journey of menopause, I cannot rush this.

I will sit in the uncomfortable space of the change, knowing that growth is always a good thing, and that this means, there is light at the end of the tunnel, and menopause will pass.