My Endo Story

hospital

I’ve had so much resistance to sharing my personal endo story publicly. Yes, it feels vulnerable and raw. But mostly, it feels sort of self-indulgent. I mean, I feel my story is not really all that interesting, and it’s definitely not unique! However, I do have a sense of personal responsibility to share my experiences. Keeping endo shrouded in shadows and secrecy only allows us, and so many other women, to continue suffering in silence. If we begin talking about having endo as openly as we would talk about having a broken leg or the flu, then we will immediately feel less alone and perhaps one day soon we will have better treatment options or even a cure.

So, here goes…

I’ve had painful periods as long as I can remember. Sometimes a dull ache, sometimes sharp stabbing pain that felt like a scene from the Alien movie. Not just pain in the “usual” places like my womb and ovaries either, but in my bladder, pain in my bowel, pain that spread across my lower back and down my legs. I knew both my mother and grandmother had experienced something similar, and so accepted it was simply part of being female. The pain would last a few days, and then I’d be back to normal. 

As I got older I got into dieting (code for starving and then binging) and intense exercise. I did bootcamp every morning and pushed my body to “perform” even when I was in pain and fatigued. As a society we are told to push through pain. We are told we “should” be able to work out at the same intensity every day, all month long. Just like we “should” be as productive, motivated and energised all month long. This is a totally masculine paradigm. Women’s bodies simply do not work like that. We ebb and flow (literally).

Since women’s bodies are hormonally, physically, emotionally totally different from one week to the next, it is only logical to assume our physical needs and capabilities will also shift. There is a reason why ancient societies created red tents where women gathered during their “moon time” – women need to rest and take time out. I look back now at those 6am bootcamps I did every single day, no matter where I was at in my cycle, and I cringe inwardly. My poor body. No wonder I was exhausted and miserable. A heartbreakingly painful relationship break-up was the last straw. My body was done. I got glandular fever that knocked me out of action for a month and then experienced the most stressful six months of my life (you can read all about it in my Year of Jamaica blog.) After that, I experienced chronic fatigue that lasted years. I would fall asleep on buses, park benches, and at work. My period pain became so crippling I could only lie in bed with a hot water bottle and wait for it to be over. 

I dove into every book, blog, workshop and podcast I could find on periods and women’s health. I focused on lowering my stress levels, prioritising self-care, only doing movement that felt good, meditating every day and syncing my eating to the phases of my cycle. I looked into the link between women’s bodies and the moon. I worked with a naturopath and took endless supplements. But the pain did not lesson. In fact, it got worse. I started to get pain around ovulation as well. First just a twinge, then eventually as much pain as during my period. Then gradually I noticed the pain lasted from ovulation all the way through until my period, until suddenly I found I had pain every single day of the month. I went from someone who rarely took paracetamol to someone who had to consume a steady stream of prescription pain killers just to get through the day.

I caught up with a beautiful friend of mine who strongly encouraged me to get a referral to see her gynaecologist. She had just had laparascopic surgery for endo and she was convinced I had the same thing. I was in denial. I didn’t want to believe it. I definitely didn’t want to have surgery. I threw myself into acupuncture, pelvic massage, Chinese herbs and read anything I could find on ways to treat endo naturally. But after three months of non-stop pain and a tonne of research I had to accept that I was totally out of my depth.

My fantastic GP was happy to refer me to the gynocologist my friend had recommended (I’ve been so lucky to only receive support and validation from all my doctors, which I know is not always the case.) The gyno was an expert in minimally invasive excision surgery – after my extensive research I knew this was the most effective kind of surgery to have. At the appointment the gyno asked me three or four questions before stating she was quite sure I had endo. I was booked in for surgery about a month later. Being in constant pain, a month felt like a year. And yet at the same time I was terrified. What if they didn’t find anything at all? What if it was all in my head? What if they did find endo and had to take out some of my organs? What if they found something even worse was causing the pain?

Another lovely friend suggested I see an Emotional Freedom Technique therapist to process my emotions around the surgery. It was a game-changer. I sobbed throughout the entire session as we worked through all my fears and limiting beliefs relating to not just the surgery, but my body and my pain. I felt like a new woman at the end of it, so much lighter and brighter. The morning of my surgery I felt totally ready. Calm yet almost excited. Finally I would have some answers about what was going on inside me. This terrible pain would hopefully be a thing of the past. I laughed and joked with my boyfriend and the lovely nurses as I waited to be wheeled in to surgery. I felt safe and taken care of. I couldn’t have asked for better care.

Afterwards, while I was still in a haze of morphine and anaesthetic, the surgeon came to see me and told me the surgery was a success. She found a large amount of endometria on almost all of my pelvic organs and she was confident she had excised it all out. She said had I waited another year to have surgery she believed my organs would have started fusing together (scarily enough, the average wait time for laprascopic surgery through the public system is one year). Like my GP, she was totally confident that I would be off the pain medication and feeling great very soon.

Unfortunately, this has not been the case. I’m six weeks out from surgery, so it’s still early days and the critical time to support my body. The first two weeks after surgery, it was worse than any pain I experienced in my life. There were times it felt like I was still being operated on. The third week of rest, I began to see some definite improvements. I had an hour or two at a time when I could get by on just paracetamol and ibuprofen (which was a major deal at that point!) But as soon as I returned to work, the constant pain returned too. The only respite is when I am in acupuncture or physio sessions and the pain completely disappears – for a little while. This in itself feels like a miracle and gives me hope that it is possible to experience pain-free days or weeks or even months. I have wondered more than once if the pain is simply in my head. If the reason for the pain is gone, why does the pain continue? Is my brain just stuck in a loop of sending pain to the same places in my body? Did the surgeon miss some of the endo? Or, is there something else altogether that is causing the pain?

I have to let all this go for now, because regardless of the answer, the best thing (and perhaps only thing) for me to do is focus on supporting my body to heal in any way I can. Since experiencing pain-free moments, I have a bench mark, a memory to hold on to that might help retrain my brain to focus on wellness and feeling good. My surgeon strongly recommends hormonal birth control as a way to “manage” endo, but I have decided against this course of action (I explain why in this post). Basically, since it tends to grow back with or without hormones, I’d rather go without and try other healing methods that resonate with me. I believe it is our natural state to be healthy. I am doing all I can to support my body physically, emotionally, mentally and spiritually. Beyond that, I must keep trusting my own body’s wisdom and capacity to heal.

One thought on “My Endo Story

  1. Pingback: How to Prepare for Laparoscopic Surgery | Sparkly With Endo

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