I was so excited to discover that Lenny Letter 8 is all about endometriosis. Padma Lakshmi, Lena Dunham and others talking about their experiences.
I’m now a month post-hysterectomy and endometriosis removal surgery, and I’m doing my own tiny little bit of talking about it on Kimba Likes. It’s something that we need to talk about. We need to open up and understand what is “normal” and what needs further investigation.
It’s not pretty, but it is important.
What is endometriosis?
Endometriosis is where the endometrial lining of your womb (the blood that is shed during your period) flows back through the body and forms lesions in your pelvic area. Every month, these extra endometrial cells bleed just like the ones in your uterus. There’s nowhere for this to go, so it continues to grow. Organs can be bound together, making normal functions such as going to the bathroom, ovulating or having sex painful. It can affect fertility.
It doesn’t just affect the woman who suffers from it. It can have an effect on relationships, work and friendships. As it is an invisible disease, which also suffers from the TMI label, many women can’t express how much it affects them, or are disbelieved.
Because endometrial growth is organic, of your own body, it isn’t recognised by the body as an intruder and flourishes.
My endometriosis story
I got diagnosed three months before my endometriosis removal and total hysterectomy operation. I had no idea I had endometriosis. I was 42 years old.
My specialist reckons I’ve had it since I was 13, based on my history and symptoms. That is damned near 30 years.
Those symptoms were the reason I was on the pill for years and years. I’ve pretty much been on the Pill since I was 16, with small breaks over the years. The Pill’s side effects aren’t very nice, but dealing with irregular and hideous periods is worse.
I came off the Pill when I was trying to get pregnant, and had to go back on it the following year after my son was born. You can read about my IVF experience here.
At 40, I decided that I no longer wanted all those extra hormones in my body. For the first year, my periods were regular. For the first time in my life. I joked that finally I was a Real Woman. A normal human being. One who had a regular cycle. Little did I know what was happening inside my body.
My regular periods weren’t much fun, but they weren’t hideous either. Every couple of months, I would have a much heavier cycle. They’d gradually get worse, until Very Bad became my new normal.
Eventually, my periods became unbearable. I was unable to leave the house for a few days every month because the bleeding was so heavy. I wouldn’t have been able to hold down a job outside of my home. Thank goodness for blogging!
During the rest of the month, I experienced constant pain and anxiety. I had to turn down invitations to blogging events, and catch ups with friends if they clashed with my period week. I couldn’t schedule an appointment without checking my cycle app. Endometriosis was running (and ruining) my life.
Life became a cycle of pain, exhaustion, anxiety, and fear. I couldn’t trust that my own body would do what I needed it to. I was living a half life.
Way back when dinosaurs still roamed the earth, or in my early 20s, I had a laparoscopy and colonoscopy after experiencing weird periods and constant upset tummy. I was diagnosed with PCOS, food allergies and IBS.
I was told an STD had caused some tissue growth, and had a D&C to help clear it up. The years of shame and guilt I felt over that, when it was actually endometriosis? Not cool.
In my early 30s, I was diagnosed with an autoimmune disease. For the next 10 or so years, these symptoms helped to disguise my endometriosis symptoms. My food allergies and IBS helped a lot here too.
More doctors need education about women’s health issues. So many of my issues and symptoms were missed or written off as my autoimmune symptoms. Or as getting older. Or post IVF / pregnancy.
These symptoms were loo issues, oedema, bloating, heavy heavy periods, irregular periods, long periods, frequent periods, back ache, depression and anxiety, weight gain, loss of sensation in my extremities, restless legs, pain from exercising … et al.
Many times I’ve been to the GP about these symptoms over the years. I’ve seen an endocrinologist, a nephrologist, a dietician, physios, chiropractors and a psychologist.
I’ve been on anti depressants, Valium, various contraceptive pills, diuretics, painkillers … et al.
My endometriosis diagnosis
It seems odd that a woman wouldn’t know that she had such a terrible disease, right? But if you’ve always had heavy periods, that is your normal. Over the years as they worsen, that becomes your new normal. You get used to living with pain. It doesn’t hurt any less but it becomes your standard.
Luckily, technology and a new GP saved me. My diagnosis came from a scan – I didn’t have to have a laparoscopy for diagnosis. Women are still undergoing operations for diagnostic purposes because not enough people (including GPs and medical professionals) know about them. Scary huh?
We need more education about endometriosis. Our primary healthcare providers need more education about endometriosis. Talking about it helps to educate people, including the sufferers themselves.
I’m not apologising for Too Much Information. I feel like I’ve got a whole new life. Not even my life back, but a whole new life. I can finally be the woman I was meant to be. The mama who can join in the family adventures. The wife who can be spontaneous. The friend who can say yes more often.
It would just make it all the sweeter if my experience helped someone else with similar symptoms find a whole new life too.
Do you have endometriosis? Or know someone who does? Has reading this given you a better understanding of the disease?