What it’s really like living with endometriosis
I’ve Googled many descriptions about endometriosis and while some do explain some of what it’s like having endometriosis, I’ve never found any really truly do describe it fully.
I feel like there is a lot of misunderstanding. So I wanted to write this article in hope to paint a true picture (my experience anyway).
Many don’t mention the fact you can be a fully, healthy, functioning human one day, and the day before you menstruate or day of, go from feeling energetic and fine, to almost passing out in the most inconvenient locations.
Last month I was driving towards Ballarat, going 110 kilometers on the freeway. It was the day before menstruation and I had zero pain. Yet suddenly I felt that all-too familiar lightness of my hands and a very faint. I know the feeling all too well. I pulled over at the nearest exit and grabbed coconut water and a slurpy. Yet sugar is not really the issue. I just did that in hope it helps.
This issue is actually something I’m currently working on with a naturopath (to work out why). It’s hormone related. We know that much. I eat well, I even have honey in my drinks (as it’s low-GI) to help with my energy levels on those days, but no matter what, the feeling of almost passing out occurs almost every month.
The worst part is I have passed out while sitting up at my desk. The best part however is I now know all the symptoms and I know to stop or lay down as soon as those feelings occur, so I now prevent actually fainting completely. Still, the experience doesn’t get better and in a work situation, it’s inconvenient and you feel quite vulnerable.
Yes, for me, endometriosis is all the things I’ve read online. During menstruating, you can have awful painful periods, diarrhea, bloating and fatigue. But no one really describes how bad that fatigue is or that operations and pills may not do much, or have huge side effects.
The fatigue itself is not just mild. It’s as if someone has grabbed an injection (like the ones they draw blood with), stuck it in you, and drawn out every single last micro amount of energy you have. It’s a fatigue I’ve never felt with any type of flu or virus. It’s all encompassing. I feel like I go to war with my own body every month, while it’s obviously working really hard to fight off this disease.
So what is endometriosis?
In a nutshell, endometriosis is a disease in which tissue similar to the lining of the uterus grows outside the uterus. It starts from a woman’s first menstrual period and last until menopause.
The tissue that does grow then leads to inflammation and scar tissue forming in the pelvic region (and sometimes other areas of the body).
The current cause is unknown, there’s no way to prevent it, there’s no cure, and it can only be diagnosed by undergoing a laparoscopy. Ultrasounds cannot detect it or what stage you have.
For example, in 2010 I had my first laparoscopy and was diagnosed as ‘mild’ (stage 1). I didn’t think it had even become worse, because each time I complained about pain, I was told the ultrasound likely showed a cyst and I would be fine. I pushed for my second laparoscopy because I knew something wasn’t right. In 2023 I had my second laparoscopy, which showed I had progressed to stage 4 and the growths were all over my pelvic area.
Everyone’s symptoms are different, but the ones I suffer from occur one or two days before and during the first three days of menstruating. These include:
Extremely painful periods
Bloating and nausea
Extreme fatigue
Feeling faint or feeling as if I’m about to faint
The common myths
Myth #1
The operation (laparoscopy) will fix it
Laparoscopies do not cure it or take away any pain (well for me anyway). You might ask, well doesn’t an operation remove the growths and then you’re better? I wish. Oh how I wish. Yes, the laparoscopy removes the growths, but this just prevents them getting bigger and joining organs together that shouldn’t be together. Endometrial growths will continue as long as you have a period. As for my case, the two operations I’ve had have had absolutely zero effect on pain and symtoms.
Myth #2
Can’t you just take the pill and it will help?
Again. Oh how I wish! I tried an IUD for years and got my period like clock work, every 28 days. In a nutshell, this means that every time I have a period, I risk growths. I tried the implementation device (also known as the rod), which caused three months of spotting and needing it removed. Removing that thing was hell. I was at a full time dance school at the time and super fit. Due to dancing daily, my muscles grew over it, so I needed surgery to remove it and still have a scar from the stitches. I’ve tried five or six ‘new, better, improved’ pills on the market, all which made me vomit. A few months ago I tried a new pill, Slinda. This made my heart race and spot daily. I’m currently scraping the bottom of the barrel for options and the Mercy Hospital for Women have found one more pill for me to try in hope this one is better. The pill itself however has many other side effects as synthetic hormones are also not great for your body. However in the choice between pain, growths and another op, and trying a new pill, well, I’m going to do all I can.
Myth #3
It will all improve when you have a baby
Nope. I’ve met several women and several on the day of my last operation at Mercy Hospital who were going in for their third and fourth laparoscopy, even after having kids. One woman had children and was having a hysterectomy to stop the pain. While for some women, it might stop pain, it’s not the case for everyone and as a single lady, I’m not about to go have a baby for the sake of trying to rid my pain.
The struggle is real but we endo sistas are tough
I hope this paints a better picture than what Google can for you. Most of the month, I’m a vibrant, energetic woman! However some days are hard. Just this week I was paralysed in pain, trying not to vomit and gripping a pillow on my couch while I waited for the Nurafen to kick in.
I’m a hard worker and I listen to my body as well. I don’t let endometriosis ruin my life, but sometimes, it does put me behind on my goals. I lose an hour or more at work, I can’t workout like normal, I cancel plans and I can’t wear clothes I want on certain days due to severe inflammation.
It’s not easy. I’ve struggled and lived with this disease since my very first period. I remember ending up in the sick bay at school. But there is so much being done to research and find a cure, and that gives me hope for women in the future.