My Path to an Endometriosis Diagnosis

March is Endometriosis Awareness Month, which has also happened to align with my own personal timeline of finally freezing my eggs! I say finally because it’s been nearly 2 years since my Endometriosis diagnosis and it’s not a decision I have made quickly or lightly.

I tossed up on whether I wanted to share something so personal with so many people. Anyone with Endometriosis knows that the mental struggle can be just as debilitating as the physical pain at different times, and we all have different levels of comfortability when sharing our stories with those around us. It was in the  meeting we had about how we wanted to raise awareness for Endometriosis this month that I decided that sharing my decision to freeze my eggs and how I am preparing my mind and body for the process is something that many people with an Endometriosis diagnosis may learn something from, or resonate with. So I hope by giving you a little bit of an insight into my journey, you may make the brave decision to go down this path also (if it’s the right thing for you!).

Part one of this blog series will talk about my journey to diagnosis. I would also recommend you read our recent post Understanding Endometriosis – Symptoms, Diagnosis, Treatments where we discuss what endometriosis is, what the symptoms are, how it is diagnosed and treated, and how naturopathy can support alongside medical management.

Part One – My journey to diagnosis

In early 2020 I went for a routine Pap Smear with a new  GP, she was very thorough and as she started going through her standard questions about: regular periods, pain, pain with sex etc., and I sat there answering, she stopped me and said, ‘You know none of this is normal right? Has anyone ever said to you that you might have Endometriosis?’. 

I had been experiencing painful periods for as long as I could remember, some days I wouldn’t be able to get out of bed until my pain killers had kicked in, the dreaded ‘period poo’ (IYKYK) would near bring me to tears multiple mornings a month, my cramps would stop me in my tracks, leave me sobbing in bed and sometimes even have me screaming out as unexpected pain rushed through my abdomen or back; and I would sleep any chance I got!

I remember being told in Grade 6 family planning that, ‘sometimes when you got your period it would hurt, and sometimes you might need a day off school and work’, and so my whole life I had thought well, this is life? Maybe I am dramatic, maybe I have a lower pain threshold than others, for a long time I assumed everyone felt the same on their period. This isn’t even taking into consideration the gut problems and endoscopies and colonoscopies I had spent years having, searching for causes of pain and problems I was experiencing (which I now know are all linked to my endometriosis).

So I took my referral to a Gynecologist, took out private health, and was put on the public waiting list for my first Laparoscopy. 1 year later I received a letter from the public hospital saying my number was up and I was booked for my first Lap in May 2021. At this point I had also booked a consultation with Dr Tina Fleming from Grace Private for June, as she had been highly recommended as an excision specialist on the Gold Coast. However when I found out I could have the surgery without needing to pay a large out of pocket, I gave it some thought and took the opportunity.

Leading up to my first surgery I felt a roller coaster of emotions, what if they open me up and there is nothing, what if they open me up and it’s so bad I can’t have kids, what are they going to find in there?! I had weirdly convinced myself going into surgery that I would probably have it and it would be stage 2 endo (don’t ask me how or why).

When I came out of surgery and opened my eyes in recovery, I immediately looked at the Nurse and asked, “Did they find Endometriosis? She said Yes, but the Doctor will come and speak to you later. I lay there in anticipation and when I got to recovery I started to feel like something was wrong from the hushed handovers of the nurses and wondered what had happened. When the team that operated finally got to me they said, “Ashleigh we can confirm you have extensive endometriosis through your body. It appears to be covering most of your organs and due to the difficulty of the surgery required we deemed it too high risk to complete today and are referring you to the advanced surgical team”. They weren’t able to provide much more information than that and said someone from the advanced team would be in touch for a consultation. I started to cry because it’s one thing to think you might have endometriosis and it’s another thing to have it confirmed and be told it’s so bad they didn’t even want to touch it. I went home and although they hadn’t removed anything, my recovery was still relatively painful initially.

When I had my consultation with the advanced team I was told there was another 12 month waitlist to get in with them and I began to feel like I was walking around with an alien living inside of me, slowly taking over (dramatic but that’s how I imagined it). I felt a bit like I was in limbo and was so thankful I had my consultation coming up the month after with Dr Fleming. I also knew now going into my second surgery that my recovery may be longer than I had initially predicted.

After my initial consultation with Dr Fleming, I wanted my surgery booked asap, I wanted to get it out of my body stat. Tina had instilled me with confidence after my first appointment with her and said that no matter what she finds, there are always options. We were both disappointed that I had to go through my first surgery and recovery for no outcome, but she said the silver lining is they didn’t start trying to remove it and do half a job, so she wouldn’t be dealing with unnecessary scar tissue. Between surgeries I had struggled to get back into any kind of regular exercise and was more anxious than ever about finding out if the severity of the disease had affected my fertility.

Roughly 6 weeks after my consultation in July 2021 I went for my second laparoscopy. When I woke up from my second surgery I felt like I had been hit by a truck. I felt heavy, sore and exhausted to the point that even when I was out of recovery and back in my room, I just wanted to sleep. The memorable shoulder pain from the gas they pump you with in surgery was in full swing and I was anxious to hear how the surgery had gone.

Dr Fleming came around that afternoon and light-heartedly said, “you win the prize for one of the worst cases I’ve seen this year, who would have thought there could be so much endometriosis in someone so little!”. I enjoyed her sense of humour about it all and smiled, we already knew there was going to be endo, so the shock of last time wasn’t there and instead I was flooded with immense relief. I felt like I finally had answers for years worth of problems, and most of all I felt validation for every tear I had ever cried due to cramps, and every complaint I had ever made about pain and every nap I had ever taken because having that amount of inflammation in your body makes you bloody tired.

She gave me a brief run through of where the endo had been removed from and where it couldn’t be removed from because the risk would outweigh the benefit and said, ‘I don’t expect you to remember any of this right now, so we will go through it all in detail when you come back for your review and by that point you are going to probably hate me because you are going to be in a lot of pain over the next couple of weeks while you recover’.

I was diagnosed with stage 4 endometriosis and my endometriosis was found in my pelvic and rectal area as well as covering most of my abdominal organs including my diaphragm (the muscle that sits under your lungs to help you breath!) This for me explains various chest pain symptoms I get when on my period. Surprisingly my recovery experience wasn’t too different to my first lap. In addition to Endometriosis I have also been diagnosed with an autoimmune condition since surgery, this can be quite common for people suffering with Endometriosis due to the amount of inflammation present in the body and impact on the nervous and immune system. Lastly, I was recommended considering egg freezing if I wanted a family down the track, particularly if I was hoping to have more than 1 child. I will talk more about this in Part 3 of this Blog series on Endometriosis and Egg Freezing.

Ashleigh, Face Fit Clinic Manager & Dermal Therapist.

Ashleigh, our clinic manager joined the Face Fit team in 2020, coming from an extensive background in dental / managing dental practices.  Ashleigh also has an Associate Degree in Dermal Therapy.

If you need support on your own journey with Endo, don’t hesitate to give us a call.

Read part two of Ashleigh’s Endometriosis Journey.