Because for too long I’ve kept quiet. That’s what we’re supposed to do, isn’t it? Hide in shame when we are bleeding. Suffer in silence. So it’s no wonder I’ve been let down. And you probably have too.
When I hit puberty I was introduced to a type of period that wasn’t normal. But I didn’t know my flow was abnormal, because it wasn’t something that was talked about. The only thing that I couldn’t handle was the acne that began taking over my face.
In search of clear skin, General Practitioners did nothing but prescribe contraceptive pills. Failing to diminish my blemishes, I was referred to a Dermatologist. Confirming I had Cystic Acne. The most painful, most severe type of pimple. Formed deepest in the skin, most likely to scar and hardest to treat. Without further ado, I was prescribed serious medication. Something was mentioned about birth defects and my mum signed my life away. Desperate to help.
Fast forward ten years, just after enough time had passed that I was supposed to be safe the medication had left my system. I had learned how to look after my skin. And would use a wheat pack when I had lower back cramps or ovarian pain. Still not suspecting anything out of the ordinary. Married, I went off the pill but had no period. Only then did I find out, after blood tests and an internal ultrasound that I had Poly-Cystic Ovarian Syndrome (PCOS). I didn’t really understand what that meant except that my doctor emphasised that I may have difficulty conceiving, and if I wanted to have a family I should start sooner than later. And I wondered how long I’d had it for.
As predicted I did have fertility issues. Ending up under the care of a specialist who checked my tubes, ran ovulation tests, he even checked my husband. But ultimately, I was the defective one. Another serious medication whipped my body into shape and suddenly I got pregnant. Although not without complications. With a Rhesus negative blood type, severe heat rash, grade four placenta previa resulting in one-month hospitalisation and an emergency caesarean due to haemorrhaging. My life was at risk and so was my unborn. A girl.
By the time my daughter was a toddler, I was ready for another baby. This time I needed 2 types of serious medication. Then I started internal bleeding – inserting progestogen pessaries saved my baby. And in the end, I went over term being cut open due to a mysterious lack of fluid. My son was born but I was a nervous wreck. And a month into his life I was diagnosed with Hyperthyroidism.
Almost ten years later - I get the flu. It hits me hard. People are dying this season and I have Influenza B – a bad one. After two weeks of feeling like I may never recover, I fought and won. But one day I couldn’t’ breathe and panicked, then started bleeding. And I didn’t stop bleeding for the next year. Fatigued and moody visit after visit and test after test led me back to my specialist. The hormonal IUD and hormone pills came to no avail. Until, finally, a cyst burst and he booked me in for surgery.
Scared as hell, but knowing there was something wrong and I had to get to the bottom of it, I bravely went under. Everything was starting to add up now. My stomach would bloat and cramp for no reason. I’d lost my appetite, resulting in dramatic weight loss. Bleeding after sex. So when he found Endometriosis everywhere I wasn’t surprised. I don’t know what grade, all I know is it was a two-hour operation that took me two weeks to recover from, and left me in more pain than my caesarean’s. Seven jars of my insides were sent away for testing. Slowly I regained my strength. Was able to have a shower without fainting. Could eat and digest without pain. Go to the toilet without panting and heaving, and wee without the feeling of knives coming out. During my operation, the hormonal IUD was removed. A skin lesion on my left groin was cut out – I believe a reaction to the hormonal IUD, but no one will confirm why I suddenly had this bruise-like lesion on my skin that just wouldn’t go away. My uterus was scaped as much as was possible without a complete removal. Call me lucky. That’s usually what someone who wins a trifecta would say. Adenomyosis was found also - lesions in my uterine muscle, inflamed and bulky. Are you keeping track?
So now I’m on Progestin which is supposed to help me manage my Endometriosis and Adenomyosis that was left behind. And after my first-period post-surgery or the massacre as I like to refer to it. I am going ok. Pain comes and goes, nothing I can’t handle. I mean when you’re used to a certain way of life you can handle more than the average person. Exercising is a challenge, but I’m getting back into it. The threat of a hysterectomy (for adenomyosis) is looming. But for now, I pray it can wait a few years. At least until I hit forty.
The reason why I’m talking is that for too long I suffered in silence. I went undiagnosed. Felt my complaints weren’t valid. But then as things got worse I started telling people, even men. I’m sick. I’m constantly bleeding. I’m anaemic. It’s not something I wanted to publicize but now I know it’s important I do. To help friends of sufferers understand, and most importantly to help the silent women like me. Maybe still teenagers, find their voice and demand answers. Not only answers, diagnosis, the right treatment, compassion.
Now, with such a spotlight on Endometriosis, it’s not the time to be shy. We must speak up and seek help. It’s time to start talking and end the shame, I've started and now it's your turn too.