Childless by Choice & Endometriosis
There it is for the umpteenth time. The look. I despise that look. It says "No. You're wrong."
How could I possibly not want children? That's what she's thinking. That's what a lot of people think. But the difference here is that "she" is a gynaecologist and yet again her personal opinions are standing in the way of my getting treatment for a chronic disease I've been living with for a decade and that I will continue to live with for the rest of my life.
I've gone into this appointment, having learned from so many before, knowing that I'll be given the third degree. This time I'm prepared. I've written a four page script. It has three parts; 1. My understanding of the disease and the impact it has on my life. 2. All the research I've done on all the treatments I've tried, those I'm not willing to try and why, and every other treatment available that I have questions about. And 3. Why I don't want kids.
There are a plethora of reasons. Too many to list here but it boils down to the fact that I don't. And this is important because I'm not receiving the best possible solution to dealing with endometriosis in favour of preserving my ability to reproduce.
It seems to me that most treatments are geared towards women who are trying to have a baby or want one in the future. And that's a great thing for women who do. But what about those who don't? With the recent increase in research and awareness being given to this disease there will come a time when women will not have to choose but we're not there yet.
I've printed two copies of my paperwork, one to read from and one for my medical file, so that there is a record that I've asked, I've been thorough in researching my options, addressed concerns and begged for a solution. I have to, to ensure my pleas aren't dismissed. That it is recorded to show that I'm making an informed decision and that I haven't wavered in my choice or feelings in 10 years.
Imagine that. Imagine if you had diabetes, or arthritis or another chronic illness and having to go to your doctor prepared to fight for treatment, fight to end your suffering, having to make sure the notes are added to your file so that there is a record of your insistence to receive the best possible treatment to manage your quality of life.
Endo is a disease I’ll have to manage for the rest of my life. It's growing on my diaphragm, it hurts to breathe. It's growing on my bowel, there are times when I haven't pooped for up to 7 days. I've bled for 6 weeks straight. I'm on 7 different medications. 6 of those are for pain management depending on what, where and how bad. The other is an anti-depressant to deal with the crippling depression I've developed. >4 months ago the cramping was so bad that my vagina was literally coming out of my body which was the most terrifying and humiliating experience I've ever endured. I have cramps so bad that they wake me up in the middle of the night and I spend hours sobbing in pain on the shower floor. I get migraines so bad I can't move and have to just lay in a puddle of my own vomit until it passes, so bad I've had to call an ambulance. I'm in pain ALWAYS. I'm sick ALWAYS.
Despite that, I had to fight for FIVE years to finally get diagnosed because the only way to diagnose endo is through surgery, a diagnostic laparoscopy. In that time I tried every contraceptive pill available. I was told pain is part of being a woman and I needed to accept that. I was told it's all in my head. That I'm being melodramatic. Once it was "suspected" that I had endo, the fight was on to find a surgeon to perform a laparoscopy, remove any endo found and insert a mirena IUD at 22 years old because of the risk to my fertility. The first surgery I had scheduled was cancelled on the day, while I was in pre-op because my surgeon had something come up and her colleague refuse to do a mirena insertion as there is still very old (and incorrect) thinking in the medical industry that IUDs cause infertility. Back to the end of the waiting list, it was another 3 months before I received the necessary operation. It's been three and a half years since then and my symptoms have returned with a vengeance. It was agreed that my endo has grown back. I've just had another surgery to remove it and it is likely if the endo has grown back so quickly already that it will continue to do so. Rinse and repeat.
But sitting in that doctor’s office three months ago it was clear. Fertility will yet again be preserved over improving my quality of life, over repeated surgeries and ongoing expenses. Because I'll "change my mind." Because I'm old enough to have children but "too young to make that decision" not to. Because "lots of women regret it".
Because I'm "supposed" to want children.