One in ten women are Endo sufferers, most women are left undiagnosed for years because the symptoms are so similar to menstrual cramps. How can you tell if you have it? You don’t, well not really. You shrug off the pain and just assume it’s normal menstrual cramps, take some paracetamol or anti-inflammatory medication to relieve the unbearable pain. Sometimes this doesn’t work. No matter what you try and do sometimes that pain you feel low in your abdomen just does not get relieved! It’s exhausting!
You ask other women if they experience chronic pain, you research different ways to relieve yourself of it even if it’s only enough time for a nap to reboot. You are not alone! You have support and women who understand your daily struggle.
I was on oral contraception from the age of 12 because I wanted to go swimming one summer and didn’t want to have my period, especially since it was a new experience for me and it wasn’t regular yet. My mum took me to the doctor and I got prescribed the pill. Since that point I stayed on it because it was nice knowing when I was going to get my period without having to guess or try to calculate approximately when I was due for it.
Then I got married, we had already decided we wanted to have children so a year before we got married I stopped taking the pill. My body was having a hard time adjusting to the change and I figured this was normal. Doctors told me it was normal so I didn’t think much of it. For almost 3 years we were trying and nothing happened, this is when it took a toll on my marriage. We had to go for tests (oh so many tests), nothing in those tests revealed that there was any issue with me or my eggs. So it was my husbands turn, he didn’t want to do the tests and decided he didn’t want children at that point in time. I was devastated because for so long I’ve wanted to start a family and be a mother. I’m sure a lot of women can relate to that!
After my marriage brokedown, I felt like I was running out of time to meet someone to settle down and start a family. I essentially wanted to find someone who was ready to settle immediately, many mistakes were made and a few miscarriages. Mind you, I was on contraception again at this point. So I and my doctors assumed it was the contraception basically doing its job. In those 3 years with my now ex husband, I experienced unbelievable pain when I ovulated and when my period would start. It was awful, even when I went back on oral contraception the pain never wavered. I would end up in hospital because I couldn’t manage the pain.
After 3 miscarriages and several trips to the emergency room I wanted answers. Why am I having such chronic pain? How do I control it without the assistance of hospital grade pain relief? Ladies, if this sounds familiar I recommend not giving up and pushing the doctors to investigate because you just never know!
I remember sitting in the emergency room in one of the temporary beds waiting for a spot to open up in the ward. I wanted to be admitted so I could hopefully get some answers. After many vaginal examinations and ultrasounds they were going to send me home and put it down to ovulation or possibly that I would be due for my period. I couldn’t accept this. How can doctors just shrug this off? The pain is real, I’m not making it up or trying to squeeze the hopsital for medication (Yep, I had an evaluation about my mental health because of my history with depression), I was very distraught. One of the doctors doing their rounds she couldn’t understand how I passed a mental evaluation yet still had so much pain. This registrar had ordered for a laparoscopy (exploratory surgery) to see if there was anything they could pick up that ultrasounds couldn’t.
I was terrified leading up to the surgery, I started doubting myself. Had I gotten so emotionally driven by this pain that it was worse than it actually was? What if they find nothing? Then what, just keep my stock of pain relief up? Am I crazy? Did they mess up the evaluation? Ugh! So much doubt!
I woke up and went back to the ward after my surgery, I was so hazy that I can’t remember much of what the doctors said apart from “endometriosis” and “category 4”. Thankfully my mum was there with me waiting for the results! Mum burst into tears and I was confused. Mum explained to me that I was diagnised with category 4 endomtresiosis and that there is no known cure for it. I’m sorry, what? An incurable disease? What does that even mean? Can it kill me? Will it kill me? I guess it can kill a person if it goes on untreated for too long and it’s severe. That’s still a little unclear to me.
It hadn’t completely sunk in that my fertility was now compromised or had been compromised for a while. There was no way of knowing when this endo decided to show itself. I remember thinking a lot that my desire to have children grew immensely. You don’t realise how much your mind focuses solely on thing/task or whatever until that thing is threatened. Will I ever have my own children? What are my options? How long do I have before the endo takes over my uterus? Will I need a hystorectomy?
All the pain I had experienced for years made sense, why my ex husband and I couldn’t have children yet he was able to have a child with his new girlfriend. I had also found out in that surgery I suffer from retrograde menstruation which could be linked to endometriosis or at least the pain intensity. I wanted children yet I wanted to stop the pain, it was affecting every aspect of my life. My work, my home, my state of mind, my physical ability to do even the smallest of tasks. So far the only thing that worked for me was having the Mirena IUD implanted. It was amazing, for the year leading up to my last pregnancy I hadn’t experienced any pain. I got my energy back, I was starting to feel positive again about my future and had come to terms that I probably wouldn’t bear my own children.
It’s a sad reality. To live with the pain. To have to research options of having a family instead of just enjoying your partner and falling pregnant the natural way. In some cases it can happen naturally (it did for me not even 3 months of having the Mirena removed) but for others this might not be the case. The struggle to be able to muster up the little energy you have to get motivated to attend work or even just to get out of bed on a weekend. Depression and/or anxiety can be a factor as well, know the signs and if you don’t? Find out what the signs are! Beyond Blue and Lifeline have always been my go to websites, you can call them or even email them to get the info you want or need. There is so much support and you can be anonymous if you wish.
I pride myself on being an honest person and being real, I don’t pretend to have my shit together all the time (sometimes I try but it doesn’t work) but that’s the anxiety getting the better of me. When I feel that my anxiety is behaving, I know that there are bad days and that’s ok! Everyone has good and bad days. It doesn’t mean you have to deal with it alone or suffer in silence. I’m here with you, experiencing the good with the bad and if I’m not the person you want to vent to or just for a moment forget about all the rubbish that endometriosis throws your way? Then find someone your comfortable with. I strongly recommend it. Whether it be a friendly stranger in the blogging community, a family member or friend, and don’t forget there are professionals out there too!
Always remember, you are not alone! I’m here too still figuring it out.