Mission almost-impossible - studying with endometriosis

By Louise Goode, PhD Candidate, Department of Earth and Planetary Sciences, Macquarie University, Australia

March is endometriosis awareness month, and so I am writing this piece to provide some insight on endometriosis, or ‘endo’, and share my personal experience of living with and managing it whilst studying.

Endometriosis is a chronic disease that effects 1 in 10 women worldwide, but many have not heard of it, partly due to the stigma that exists around women’s reproductive health and periods. Because of this, many women often suffer in silence even though in Australia it affects 500,000 women [1].

Endometriosis is where cells that are similar to the lining of the uterus occur elsewhere outside the uterus [2] such as on the ovaries, the surrounding pelvis, bladder, and colon. Every month these cells build up, shed and bleed, just as the endometrium inside the uterus does during a period [3]. However, this blood outside the uterus has no way to escape. This can result in a number of chronic and often severe symptoms including fatigue, pain on periods and ovulation, pelvic pain and cramping, painful bowel movements, irregular or heavy bleeding, and sometimes infertility, among others [2,4] (Please see any of the sources below for a full list of symptoms).

Debilitating pain during your period, or any time around your cycle that interrupts or puts your life on hold is not normal [5]. Endometriosis is difficult to diagnose and involves medical imaging and laparoscopic surgery [6]. Finding someone that is skilled in laparoscopy excision of endometriosis is key, as the surgeries are often complex and can involve multiple organs [7].

Endometriosis is also hard to live with mentally and physically, often impacting on quality of life, but there are many ways of managing symptoms and the disease [6]. Below is my journey and experience with endo and studying towards my PhD degree.

From the young age of 11, I suffered from unusually heavy and painful periods, resulting in many trips to different GPs and hospitals until diagnosis. I was prescribed different pills to manage this for many years, but I never had further medical examinations to find a cause of these symptoms. I have always had digestive issues and was diagnosed with IBS, which I know now was a misdiagnosis.

I was always told that my pain was normal and so I just learnt to deal with it. It wasn’t until I made the move to Australia (from the UK) in 2013 to start my PhD that steps were made towards a diagnosis.

Due to the pill I was on not being available in Australia, my symptoms worsened to the point where I would not be able to get out of bed for days, with severe debilitating pain on ovulation and during my period. I couldn’t go out and do the things I enjoyed, like hiking, and I couldn’t go out when my friends wanted me to.

This also made it very difficult to find the motivation to study, I couldn’t concentrate due to the pain, and I was so fatigued. I finally found an amazing GP who noticed how miserable I was, and decided that enough was enough, and I finally had a referral to a gynaecologist. After this consult and an ultrasound, I was booked in for a laparoscopy in late 2015, that was aimed to diagnose endo and subsequently excise any of the existing disease.

At the age of 24, I was diagnosed with Stage 4 endometriosis. This diagnosis took 13 years of hardship, and whilst I was finally happy to have an answer, I was also filled with fear because I knew this dealing with this would be a lifelong battle as there is no cure. Recovering from this surgery was very painful and required a lot of patience. I was so anxious and eager to get back to my studies and to the lab, but I knew that pushing myself too soon wouldn’t help with and may even prolong recovery.

During the surgery I also had the Mirena (a hormonal IUD) inserted. I agreed to try this out as I was told it would help my symptoms and treat the endo. Although this and the surgery did improve my symptoms for a while, around 6 months later and throughout 2016, I experienced complications and further pain, meaning my studies and personal life suffered again.

At this point, another surgery was not an option as it was too soon after my first, so I was offered hormonal treatment to try and ensure that I could manage my endo enough to finish my PhD.

After much deliberating I agreed to try Visanne, a hormone therapy that can help with the treatment of endo. I had read many negative things about Visanne but decided to give it a go, because not everyone reacts in the same way to hormonal treatment therapies. For me, Visanne has been great (I still take it), it mostly stopped my periods and it has helped my symptoms to the point where I felt like I had my life back on track for about a year.

One of the unfortunate side effects for me however has been migraines. I also have days where my emotions feel a little like a rollercoaster ride. So, managing this endo, aside from hormonal treatments, also meant that I regularly saw a counsellor at the University to help with the emotional support, and managing my PhD work load. They and my understanding supervisors really helped me to prioritise and break down my work into manageable amounts. I also found that regular, light exercise, although this sometimes was very difficult, helped my mind set and improved my symptoms.

Around August 2017 my symptoms and pain started to increase again and became unbearable. At this point I was so frustrated, I only had 6 months left of my PhD, but the end point felt so out of reach. I once again couldn’t do anything I enjoyed and studying became almost impossible.

I decided to try the Mirena IUD as my previous one did help initially, and I wasn’t keen on trying any of the other hormonal therapies or other treatments offered. The Mirena initially gave me unbearable cramps, but the pain was more manageable than without it, so I decided to endure whilst I finished my PhD.

It wasn’t easy, but with the professional medical help, and the support of many at the University, and family and friends, I got there, and I submitted my PhD in February this year. At times it felt impossible, there were many occasions where I didn’t believe I would finish, but I was so determined to do so.

In my experience, the importance of a trying multiple treatments, emotional support, along with successful pain management meant that my endo was managed enough for me to continue with my PhD.

Two weeks after I handed in, I had my second successful laparoscopy for endometriosis excision, and am currently 2 weeks post-op. Although I am not sure what my next steps are with my endo journey, I am continuing to pursue my treatment and management plan post-surgery recovery.

My main motivation for writing this was to share my story and raise awareness and education for this insidious disease, and encourage people to speak up if you have any of the symptoms. I am proud to share my story and I am not ashamed to talk about reproductive health.

It takes on average 7.5 years from onset of symptoms to be diagnosed [7], and during this time the endo may spread, and the severity of the disease and symptoms may worsen, so early intervention is key [9]. If your pain is preventing you from carrying out daily activities, it is advised by Medical professionals and Endometriosis organisations to seek medical advice [2,6].

I, like many others, have missed out on many personal and career advancing opportunities because of endometriosis, and this should not be the case and is not normal. Future generations should not have to go through what I, and many others with endo, have been through.

There are many myths that surround endometriosis, but there is currently no cure and it cannot be prevented. A hysterectomy or pregnancy is not a cure for endometriosis [5]. Successive invasive surgeries, and the side effects of gruelling hormone therapies in my opinion have been strenuous on my body and mental health, and I hope that future research is centred on improving existing treatments and finding a cure.

There is hope though, with thanks to the participants of the Australian Coalition for Endometriosis, providing a voice for thousands of women, a National Action Plan is being developed to provide guidelines on the diagnosis and treatment of endo, as well as increasing education and awareness of the disease [10].

The Australian government has also granted $2.5 million to endometriosis research as part of this National Action Plan [11]. Having endometriosis doesn’t make you weak, it is a daily battle that we endure and this makes us stronger.

For any other information, I recommend looking at the following sources:

Endometriosis Australia - https://www.endometriosisaustralia.org/

Endometriosis UK - https://www.endometriosis-uk.org/

EndoActive - http://endoactive.org.au/

Endometriosis New Zealand - http://nzendo.org.nz/

Please note that this is my personal experience and I am not providing medical advice, and what worked for me may not work for others. If you believe you have any of the symptoms, please see your doctor.

Sources:

[1] Dr. Geoffery D. Reid (2017) - A New Look at Endometriosis and Fertility.

https://www.endometriosisaustralia.org/single-post/2017/07/13/A-New-Look-at-Endometriosis-and-Infertility

[2] Endometriosis Australia – ‘About Endometriosis’ https://www.endometriosisaustralia.org/about-endometriosis

[3] Endometriosis UK – ‘Understanding Endometriosis’

https://www.endometriosis-uk.org/understanding-endometriosis

[4] Endometriosis Australia – ‘Endometriosis Fact Sheet’

https://docs.wixstatic.com/ugd/aefbed_ebed46435f8f4d01bf96f4549b00870c.pdf

[5] Endometriosis Australia – ‘Leaflet About Endometriosis’

https://docs.wixstatic.com/ugd/aefbed_9a867589d4034733b298786364f3cce3.pdf

[6] Endometriosis UK – ‘Understanding Endometriosis – Information Pack’

https://www.endometriosis-uk.org/sites/default/files/files/Information/Understanding-endometriosis.pdf