Talking about endometriosis

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.

Kimba Likes sharing experiences and talking about issues. I am sharing how endometriosis affected my life for 30 years, and how I got a whole new life.

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.

Kimba Likes sharing experiences and talking about issues. I am sharing how endometriosis affected my life for 30 years, and how I got a whole new life.

Baby Boyo – totes worth all that IVF drama llama

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.

Kimba Likes sharing experiences and talking about issues. I am sharing how endometriosis affected my life for 30 years, and how I got a whole new life.

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?

Kimba Likes // a style blog with a fun family twist! @kimbalikes

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    […] I missed a few days this year thanks to a little thing we like to call a hysterectomy to fix my endometriosis […]ReplyCancel

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    […] not something I say very often about my health!), you will experience these symptoms and it will be endometriosis, adenomyosis and / or ovarian cysts.  Never have I been so happy to hear that they had discovered a major […]ReplyCancel

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  • Karen Suzanne Styleloving2 - 5 December 2015 - 5.54 pm

    Thank you so much for sharing Kimba. I think so often as women we keep the stiff upper lip attitude and suffer in silence. Maybe we need to take a leaf out of the ‘Man Flu’ guidebook and be a bit more vocal especially when it comes to anything women only related. And then maybe the health professionals will take notice.
    I too had irregular bleeding in my late 30’s – lets just say it was a period that lasted 3 weeks and 1 week off a month. Thankfully no pain and the bleeding wasn’t always heavy but it really impacted on my personal life. 7 years post hysterctomy and I don’t know myself the freedom is amazing and it really is like getting my life back.ReplyCancel

  • Bernadette - 4 December 2015 - 6.13 pm

    It’s good to read others same age as me going through this. I know all too well the symptoms living in silence as friends don’t understand that period pain is unbearable when they don’t get pain at all. I wasn’t lucky enough to go on the pill because as a migraine sufferer I wasn’t allowed on it. I have my partial hysterectomy booked in for Feb and I haven’t looked forward to something so much before in my life but I know it’s for the better. ReplyCancel

  • Suzie - 3 December 2015 - 8.55 am

    Never too much information! So sorry you had to suffer for so long, you’re helping women bypassing all you had to go through by telling your story. Best thing I ever did was have a hysterectomy. I’m a new person, hope you get the same fantastic outcome. Look after yourself xx ReplyCancel

  • Chantelle@notsopeachie - 30 November 2015 - 8.45 pm

    I have friends who do and it’s awful. They were diagnosed early on and have shared their experiences. I think it’s great for woman to share their story. ReplyCancel

  • Sonia from Sonia Styling - 30 November 2015 - 1.12 pm

    It’s so important you share your story – you never know who could read this and recognise the same symptoms in themselves. What you’re doing is brilliant. xReplyCancel

  • Lauren @SAHM I am - 30 November 2015 - 12.55 pm

    I’m right there with you! You have been so amazingly strong this last month and I apploaud you for sharing your story. It makes me want to open up too- I got told so many times to harden up and that it was just something a woman had to deal with.ReplyCancel

  • HandbagMafia - 30 November 2015 - 7.18 am

    It’s something I didn’t know much about- but now I know what to look out for!ReplyCancel

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