Mother's Day 2021: Endometriosis and Motherhood
By Amanda Burgess
At QENDO this Mother’s Day we are celebrating Mums of all varieties: from our own mothers who fought alongside us as we tried desperately to get our diagnoses, to those of us who have become Mums ourselves, sometimes after years of trying. We also celebrate those still on their fertility journeys, those who have lost children, those who have lost their mothers, those Mums growing their families. We see you, this day is for you too, and send our love and support to those who may find this day hard. In this blog, Amanda Burgess shares her experience of being a Mum while also contending with stage four endometriosis. We thank Amanda for taking the time to share her story so honestly, in a way that so many of us with endometriosis can relate to.
Mothers the world over, at some point, feel like they are failing. They get that sense of dread, that rock in the pit of their stomach because it seems like everything they do is wrong, everyone is judging them, and they are barely keeping their head above water. All these feelings are normal and valid, but have you ever considered what it means to suffer from Stage IV Endometriosis and be a mother? What the disease takes away from you, as a mother, and how it makes you feel as a result?
When I gave birth, the years of dealing with Stage IV Endometriosis had left me exhausted, drained and emotionally fragile. Add to that all the hormonal changes that come with being a new mum and I was soon diagnosed with severe post-natal depression. Thanks to Endometriosis I felt like I had lost my identity and was just a shell of my former self, making it difficult for me to bond with my daughter and enjoy all the amazing moments and milestones that occur during the first year of a child’s life.
When my daughter was born I had been dealing with Stage IV Endometriosis for three years which left me lacking in essential vitamins and minerals despite my best efforts to live a healthy and active lifestyle. This resulted in me becoming dangerously anemic and being forced to cease breastfeeding at 7 months or risk going into respiratory failure. I knew when my doctor told me this it was for the best, but it did not stop me spending each day living in fear of my period returning and along with it the debilitating pain that had thankfully remained manageable during pregnancy.
Of course, that day did come and when the pain returned I was not prepared for how devastating it would be or the heart wrenching, soul crushing guilt I would feel because of it. I had made such great steps forward thanks to medication and regular sessions with a psychologist specializing in post-natal depression, but the pain set me back and gave us a whole new set of issues to work through. I felt like a bad mum, a failure, like my daughter would be better off without me because I could not look after her in the way she deserved. I felt that I was too much of a burden because my Endometriosis often meant people needed to look after me when they should have been focusing on my daughter and in my eyes she deserved so much better than that.
Then there are the numerous times when Endometriosis robbed me of opportunities to sit on the floor and play games with my daughter because to do so would cause me too much pain. It has stopped us from attending events, going to the playground, or enjoying play dates as I never know how I will feel in an hours’ time let alone a day, week, or month from now. Endometriosis has also put a huge financial strain on us to the point where I have not been able to take my daughter on a holiday because I just cannot afford it. There have honestly been many times that I have cried over the fact I cannot splurge on special treats or trips or gifts for my daughter because I need to cover the medical expenses associated with my Endometriosis.
In some ways Endometriosis has also robbed my daughter of a normal childhood because from a young age, my daughter would take on the role of carer as I was laid up in bed, unable to move, on my worst days. Her kind and caring nature truly shone through though as she would get me an ice pack, heat pack, water and medications without complaint, whilst also providing all the hugs and kisses I could ever need which I think was the best medicine of all.
Although I loved her hugs and kisses treatment approach, my pain and symptoms continued to worsen. So, despite it not being a cure and knowing full well it would not ‘fix’ the problem, I made the difficult decision to undergo a full hysterectomy and left oophorectomy, in the hopes it would give me back some quality of life. In turn however I was forced to come to terms with the fact that I was ending my chances of having the second child I had always longed for, all because of Endometriosis and what it has done to my body.
The surgery went well but despite this radical step I was only afforded six months relief before my pain came back. With each passing month my pain levels would increase and eventually I was forced to begin using mobility aids when leaving the house as walking any kind of distance was painful and tiring. I also applied for and received from a disabled parking permit to minimise the distance I need to walk from the car to shops and venues. This has been so helpful albeit a huge adjustment for me as when you are a young person utilising mobility aids and disabled parking random strangers tend to stare or ask questions such as “Oh what have you gone and done to yourself?” like they are entitled to know what is going on in your body or what your medical history is.
Still, after all of this, Endometriosis continues to impact my life in so many ways. From the daily pain to the guilt, from the endless medications and appointments to my ability to date and hopefully one day settle down. Endometriosis has taken so much from me, not only physically but mentally and emotionally, that I have anxiety around how a potential partner will react when they find out about my condition, my journey and what it means for us if we enter a relationship. I also stress about when the right time would be to have the awkward conversations around my inability to have another biological child, my need to use mobility aids and a disabled parking permit and how Endometriosis impacts upon almost all areas of my life in some way.
Yet despite all of this, despite everything Endometriosis has taken from me and how much it has ravaged my body I still hold onto hope. I Hope for relief from the pain, for effective and accessible treatments and that some soon, we find a cure for Endometriosis so future generations do not go through the suffering I have endured.