I have always felt hard-done-by to be one of those (seemingly) few women who suffers from crippling period pain every month. But whenever I have taken myself to the doctor to investigate further I would get brushed off. Prescribed another type of birth control and sent on my merry little way. Suffice to say I was not very merry.
Fast forward to 2017 and by this time I had spent a good 18-odd years of my life suffering every month. Unfortunately it just became the norm and I accepted this as “just a part of being a woman”. But crippling period pain was not the only symptom of Endometriosis that I experienced. I suffered from a range of symptoms that, unbeknownst to me, were all related. From regular lower abdominal pain, sporadically painful sex to digestive problems (that worsened during periods) and despite my best efforts, I couldn’t get to the root cause of these ailments.
It wasn’t until I suffered from infertility that I was tested and subsequently diagnosed with Endometriosis… and I was so relieved. I was one of the “lucky” ones with an identifiable cause behind my infertility. A diagnosis of endometriosis meant that I now had options and next steps that I could take. Not only to become pregnant but also I had a new path to explore for improving my other symptoms and my overall quality of life.
I have pulled together a bit of a summary of how I was able to get pregnant, twice, while suffering from endometriosis, my learnings from my experiences and what I would do differently if I were to try for a third (spoiler alert, I am not ever trying for a third).
First Pregnancy - Lilah Claire
So, I was just diagnosed with Endo and had my follow up appointment with my fertility doctor. Now, at this point I found it most disheartening that my fertility doctor had a blatant bias for me to choose the path that was going to make her the most money, rather than the path that would be best for my well-being and overall health. So I followed my instinct, did my research and booked a consultation with a surgeon who specialises in Laparoscopies (keyhole surgery) by the excision of Endometriosis (excision is cutting it out, rather than ablation, which is burning it off). At this stage, I had two options before me, and it wasn’t until much later that I found out there was also a third option. But more on this point later.
- Laparoscopy (keyhole surgery) to remove it and then try to get pregnant naturally
- IVF
I chose option 1, a Laparoscopy. If you are interested in finding out more about my experience with my surgery, you can read more here.
After a more difficult than expected recovery, I was able to become pregnant by my second cycle of my period (I was very much still recovering from the surgery during my first cycle post-operation). It was pretty remarkable, and after peeing on a stick for so long with no luck, seeing those double lines confirming my pregnancy felt like a dream and I will forever be grateful for modern medicine.
Second Pregnancy - Leo Ziggy
Fast-forward 2 years and I had been trying to get pregnant for 6 months with no luck. Although this isn’t that long by any means, all of my symptoms of endometriosis had well and truly returned and I felt it was time to investigate again. At least this time I knew the first steps to take. I had a diagnostic ultrasound and an appointment with my surgeon and there were no visible signs of Endo found. This time around I had 3 options presented to me:
- Laparoscopy
- IVF
- Support from a nutritionist and naturopath
Option 1 was not very appealing to me this time as I had no visible signs that there was anything that could be removed - with a toddler at home I couldn’t justify the recovery time if the outcome wasn’t more concrete.
I was referred to a nutritionist by my surgeon to manage my diet in order to manage my symptoms (Option 3). But I was underwhelmed with their level of experience and expertise with endometriosis. Frustrated, I conducted my own research into Naturopaths. But in the end I decided that I didn’t want to risk the level of uncertainty or the time it took for these dietary changes to take effect on my reproductive system.
So I chose option 2, IVF. My first cycle of IVF was very stressful and coincided with the start of the pandemic in Australia - March 2020. Unfortunately, I didn’t have many follicles, had 2 eggs extracted and neither of these resulted in a healthy embryo - so this round was unsuccessful. I was forced to pause IVF due to Covid lockdowns, however this gave me a month off to research in more detail the impact of diet on fertility for those suffering with Endometriosis. And it was a life-changing discovery.
I changed my diet, following an Endo recipe book as closely as I could. After 2 weeks on the diet, the rules of the Covid lockdown changed in Sydney and I was able to restart IVF. And the outcome was positive - I had more follicles that were of higher quality and resulted in 6 eggs removed and 4 healthy embryos. I am grateful that I only needed to use one of these embryos and was pregnant after this cycle.
Now, was it a coincidence that I had such a significant change in the success of this round of IVF after I dramatically changed my diet? I don’t think so. But this is not something that I can prove or disprove. So if you’re struggling with fertility and also suffer from Endometriosis, I can say that from my experience, it’s worth looking into your diet.
So long story… long, what is it that I wish I knew before I started on this journey of Endometriosis diagnosis and ongoing treatment? -
- Research the full spectrum of symptoms for Endo, the process for diagnosis and all of your options for treatment for YOURSELF. Your Endo surgeon and your IVF doctor and your Naturopath and your GP will all share their individual POV based on their area of expertise, but not the whole picture - so do your own research and advocate for yourself.
“Current research estimates that up to 1 in 7 women may have endometriosis. However, the actual number may be higher as symptoms associated with endometriosis are often variable, different from person to person, and may vary from time to time. Sometimes someone can have endometriosis and never get any symptoms at all. This means it can often take some time to diagnose.
…The Raising Awareness Tool for Endometriosis (RATE) is a quick-to-use electronic resource for health professionals and their patients to help identify and assess endometriosis – and endometriosis-associated symptoms – to reach a faster diagnosis and achieve more effective management of symptoms”
https://ranzcog.edu.au/resources/raising-awareness-tool-for-endometriosis-rate/
- Surgery, contraceptive pills and contraceptive implants are not your only options for managing your Endometriosis symptoms. If this is all that has been presented to you, refer to the first point.
- There is a community of women ready to help you on various forums and social media platforms and I learnt a lot from them - at times, they can be your best source of general info and support. I personally found Jessica Murnane very helpful, both her podcast and her instagram accounts/book.
https://www.instagram.com/jessicamurnane/
https://www.instagram.com/knowyourendo/
Biggest hugs and lots of strength, from me to you xx
Always with Love,
Avril
