Before I go any further let me warn you that this post is about periods, ovaries, a uterus, and that sort of stuff, so if these things make you uncomfortable, stop reading right now.
I have endometriosis, a condition where the inner lining of the uterus grows out of the uterus and around the surrounding organs. And like the inner lining of the uterus the extra lining also responds to the monthly hormonal changes and sheds itself every month. But unlike the menstrual blood that makes its way out of the body, this blood collects on the inside and starts forming cysts.
The cause of endometriosis is yet unknown and the only real treatment is laparoscopic surgery to remove the cysts and clear away the extra tissue. There is a hereditary element to the condition, so mothers and grandmothers can pass it down to daughters and granddaughters. I inherited the condition from my mum.
I came to know that I had endometriosis way back in 2004 through pure chance. I had a mysterious fever and while being examined by the physician, he found internal swelling in my lower abdomen and had me get an ultrasound done. And boom! Less than 24 hours later I was being taken in for an emergency laparoscopy to drain a ginormous cyst on each ovary.
I was in my twenties and unmarried so the docs did everything they could to make sure that I would be able to go forth and multiply like the Lord intended. And I did. Over the next few years my main focus was starting a family and I brought two amazing little girls into the world.
I was fine for a while and the two pregnancies actually sent the condition into remission for a while. Then in 2012 the cysts were back. It is only because I religiously got an ultrasound done every year that we were able to catch it early and monitor the situation. I underwent a second laparoscopy and this time the cysts were removed along with a lot of the excess endometrial tissue. I felt so much better after the surgery and was ready to take on the world.
Let me interrupt the series of events here are backtrack for a bit. Intense period pain or dysmenorrhoea is not normal. Some amount of mild cramping and discomfort during periods is fine but unbearable pain is a cause for concern. My mother would get terrible pain during her cycle but her whole young life she was told that it was normal and grew up believing that.
When I hit puberty and started experiencing unbearable pain as well, guess what? I too was told that it’s normal and was given a hot water bottle. By the time my mum’s condition was diagnosed it was already too late and the tissue had become malignant. Any abnormally growing tissue in the body will turn malignant eventually. And yet, I continued to believe that my period pain that completely incapacitated me was “normal”.
So ladies; young ladies, older ladies, mums and mums of teenage daughters, I implore you, don’t ignore the pain. If it’s too much to bear get yourself checked up and get your daughters checked as well. I got lucky, but sadly it was too late for my mum.
And we’re back: Early last year (2017), I knew that the endometriosis was back. I got an ultrasound done and my instincts were right. My gynaecologist started me on a course of treatment which was brought to a grinding halt by my portal vein thrombosis (PVT) diagnosis. The endo was not life threatening so treatment was stalled till the PVT was brought under control.
Of course it was just my luck that the condition would only worsen. Several doctors, treatments and a blood transfusion later we arrive at the present moment. I have a large painful cyst on my right ovary, a smaller cyst on the left, multiple cysts all over the place, two uterine fibroids and a damaged fallopian tube. But it gets worse; because of the blood thinner I am on for the PVT my cycle had gone completely haywire and my bleeding off the charts. Every few months I find myself severely anaemic with no energy to get from one room to another. Thankfully we have finally reached the end of this story.
In two days from now I will be undergoing one last and final surgery for endometriosis. This is the only real cure for endo and it requires me to bid farewell to these parts of my body that made me a mother. These ovaries bore the eggs that created life and this uterus nurtured and carried my daughters to full term. I have nothing but gratitude for my body but the time has come to let go of what no longer serves me.
It is the end of an era; a journey that started almost thirty years ago, and it is a very emotional time. While I had no plans of having any more children the finality of it all takes some getting used to.
This post is not to gain your sympathy but to create awareness, pain is the body’s way of letting us know that something is wrong so don’t ever ignore it.
I am a survivor and I will get through this. It’s all about getting better from here on.