- If you could go back in time and talk to yourself (or your loved one) on the day of diagnosis, what would you say?
- What have you learned about being a patient/caregiver that has surprised you most?
I think I’m going to do endomitriosis for this blog entry. At first I wasn’t even diagnosed with that. They just diagnosed me with Dysmenorrhea, or chronic period pains, gave me tablets to take when I started bleeding and sent me on my way. One, it wasn’t right and two, it didn’t always help. The pills helped a lot a but only once they kicked in and if I started cramping early into my bleed then I didn’t catch it in time and given how irregular I was it wasn’t like I could predict it. I guess I kind of described myself. I looked up everything online because even though things were better I couldn’t live like that anymore and found endomitriosis. It was a rather horrific search session of ‘…that is all me…that is all serious…shit I need to see a doctor before a cyst blows up’, because I have GAD and of course it was going to convince me I was on the verge of a blow up. Anxiety is not fun like that.
So I went, I rambled and the doctor agreed and off I was sent for scans and such. Luckily it would seem I’m cyst free but I was sent packing with THE pill this time and a diagnosis. If I could go back that few months and talk to myself, I’d tell myself to research more right away. I was so wrapped up in how better everything was and getting excited at how I was regular and without horrific pain that I didn’t think past it. I was so used to the niggles and problems that they didn’t register too much. It took for one period to again be a bit more painful for me to start thinking of the other symptoms again. The pill was working but not on everything and that led me back to the internet and into the library.
Researching this disease has been a horrific experience. There is nothing but doom, gloom and terrifying statistics. Over ten years this body has waged an uncontested war against my body and I’ve no idea how much damage it has done, only the pain it has caused. I now need to find the strength to go to the doctor and demand surgery and answers as to where exactly it is and how bad it looks. If I had known more of the symptoms earlier I would have found better ways to combat them and stopped blaming myself for things sooner. I would have found the ways I know no to avoid antagonising the symptoms but I didn’t know because no one told me. I was told I had endomitriosis but no one explained what that really meant for me. I knew it was horrible periods but I wasn’t told about the other strange symptoms that I would never have connected on my own. Learning about the symptoms took away some of the despair and the feeling of ‘omg my body just doesn’t work. even my head hurts now’. No, actually headaches are an endometriosis symptom and I shouldn’t beat myself up because I’m doing everything I can to manage to illness. I’m finding info, taking meds and pushing for more treatment. I’m ticking all the boxes and that is all that can be asked of me.
So self, get all the information asap and go back and rant more and get more help. This is a serious disease with serious consequences and just because we don’t have cysts now doesn’t mean they won’t form and I personally don’t fancy collapsing in a screaming heap. And don’t be ashamed. Yes, it is periods and ovaries and your uterus but these things are natural and not talking led to 10 years of this bullshit with no help. I let myself be brushed off too many times, told it was natural and just take more ibuprofen when you can. I spent too many years deciding between taking away 80% of the pain for 2 hours with ibuprofen and paracetamol now or 50% buy keeping meds steady over 4 hours. I risked too much because sometimes I took more tablets in a day than I should have just to get by. I won’t be ashamed of that. I was a child that spoke out and was brushed aside. It wasn’t my fault. Not getting diagnosed until I was 21 wasn’t my fault. Any damage that has already occurred inside wasn’t my fault and if I could make myself realise that on the day I walked out with my first prescription of pills and instructions for 7 day gaps I would.