The weird thing about learning that you ‘may’ have Endometriosis is discovering that all of the things you have been experiencing aren’t normal. I mean, how was I supposed to know that most women don’t:
- Have spasms and stabbing pain so intense in their bowel that they can’t go to the loo or fear they will collapse with the pain on public transport
- Bleed so heavily that they see stars and feel dizzy when they stand up too fast
- Feel constantly fatigued, no matter how much sleep they have
- Have intense uterine contractions every month that result in them being bed bound for a few days
- Have pain that is so intense, that when they feel it start to strike they dare not move out of fear it’ll worsen, even if this means becoming a statue on the train or in the supermarket
- Avoid becoming aroused (let alone having sex), because it can be so uncomfortable/painful it’s just not worth it
- Have stabbing pains in their bladder if they don’t instantly pee on demand
That’s just some of the things I’ve experienced. It’s a strange situation; on the one hand it’s a relief to know it’s not normal and there’s a reason for it, yet you now may have an incurable disease that very few people can pronounce let alone understand. And worse of all, no one can just say you have it. You have to have an operation before you can even be diagnosed.
What I found interesting is that once it is expected you have it, nothing is done about it. Apparently, despite you being in crippling pain, it’s OK to have to live with some pain. To quote my GP at the time:
“It’s only when the pain becomes unbearable or abnormal that we will refer you”.
Of course this then lends itself to the question of, well, just how much pain is normal then? This is still something that totally stumps me. Many a time I’ve found myself in A&E, coiled up in pain, yet sent away because apparently, Endometriosis pain is meaningless. It’s “normal to have pain” “It’s nothing to worry about” “it’ll just be your Endometriosis”. Words that are very reassuring when you feel like your insides are tearing their way out. Not. (And needless to say, on every occasion I was turned away, there was actually something more sinister happening, but that’s another post! As in the incredibly high pain threshold experienced by most endo sufferers due to being used to having to cope with high levels of pain).
You’re expected to put up with an unacceptable level of pain, because that’s what endo is all about, apparently. Yet, if this were any other physical symptom, it wouldn’t be OK. In fact, upon arriving at hospital, you’d probably get seen by a doctor who would at least examine the cause of the pain. Maybe even ask you a few questions. You wouldn’t just have a nurse comment that it’s to be expected with Endo, and you should just take some paracetamol or ibuprofen and have a hot bath. 🙄
Luckily, after a while of you living as if this is normal, your GP will finally decide to send you to gynae (this took me 5 years from discussing my symptoms with my GP – the average is 7.5 years. I was one of the lucky ones, although I had had symptoms for years before mentioning it to my doctor).
Finally, you can have an operation to determine your diagnosis. Never before has the word operation sounded so appealing! You don’t even care that you have to have surgery. By this point, you are used to normalising the abnormal. You are just so over-joyed that someone is agreeing this isn’t a normal way to live, and FINALLY you will get some answers. You could just cry with happiness because it’s the first time within years of pain, that someone finally seems to be listening to you.