How far does this go back? Probably when I was having my first period around the age of 13-14. I was very skinny and was bleeding so heavily that I became anaemic. The pain continued over the years with me taking full days off school due to the intensity of it. I never knew at the time that it was anything more than 'the usual' that women had to deal with. I thought it was the same for other girls, and while I knew the extent of the pain was so strong that it just didn't feel 'right', I put up with it. Every month I would, with no exaggeration, curl up into a ball and scream from the pain. I attended A&E throughout my teenage years and early 20's, because I would notice the pain localised to one side and it was unbearable. Each time I was sent away with paracetamol and told "I'm just not convinced it's appendicitis" - which obviously meant it was nothing. I think my parents would get frustrated with me as the nearest hospital wasn't close and every time I went, I would need one of them to give up their time to wait with me to see what the problem was.
It reached a point where the pain became a normal thing for me; it was just something I put up with. I would take a lot of painkillers and not worry.
I don't remember the details that prompted a visit to the GP one day, but she suggested looking into this pain a bit more. Over the years it had become something that didn't just happen around the time of my period and even happened in the absence of one altogether. I ended up getting an MRI which suggested the likelihood of endometriosis. At this point it was unknown for certain so they did a laparoscopy. The laparoscopy failed due to the scar tissue around the entry point. I then had to have another one, but for this one I had to lose weight. They called me when ready for my operation, and each time I was too heavy. They kept calling every few months and I'm thankful they were so keen for me to have the operation, but each time my BMI was too high for them to comfortably perform surgery on. My gynaecologist only suggested coming off the pill (part of the pain plan for the endometriosis, but evidently not making a difference) and exercising more/eating less to lose weight. I don't expect much since he's not a dietician, but I was left in a situation where I couldn't feasibly lose the weight.
So I went on a weight loss injection (out of pocket), started eating rice cakes for breakfast, lunch, and sometimes dinner. Lost 5 stone overall and got the surgery at the end of November.
Tissue was removed during the surgery and was later confirmed through histology to be endometriosis.
The recovery wasn't fun. I was in surgery-related pain for months after, and even after that the pain continued. I noticed my pain got worse during each period, so the next logical step was to do something about that.
As of last month, I got my first leuprorelin injection and started accompanying HRT. I've had some uncomfortable side effects (the hot flashes are no joke), but I have noticed my pain has subsided a little. I still get strong pangs of it, but nowhere near as often. I wonder if I just had to start the menopause to be freed from the extreme pains I've been feeling most of my life.
I want to also give a little attention here to that pain itself. While it can be difficult to describe pain and the severity of it to someone pain-free, imagine there are thousands of small knives inside you stabbing you from the inside out. That's what it's like.
I also want to say a bit about endometriosis treatment in general. I didn't get anywhere near a diagnosis until my late 20's. I didn't get that diagnosis until my 30's. I didn't get successful (fingers crossed) treatment until the age of 34. The fact that I thought for at least 20 years it was just a normal thing is a travesty that I shouldn't have had to deal with. You often hear some of the things women are told by doctors and are in disbelief, but I can confirm I'm one of those who was told "If you get pregnant you can get a kind of 'honeymoon' from it." Which is shocking in itself, nevermind the implications of bringing a child into the world purely to (possibly!) escape from pain for a 'little while'.
I wanted to do this post earlier, but I've honestly not had the time to. I feel it's important to speak about though. That's all for today.