This all may be too much information, or triggering, but here's my experience with endometriosis recently:
I ended up in A&E last week. I've been suffering with endometriosis for years, but have only just got a diagnosis. Last autumn I had some investigations, and when the results came back in January it turned out I needed another procedure, under anaesthetic. However, because of the thickness of my womb lining (around 2cm for goodness sake!) I first of all needed some meds to thin that so they could do the procedure better. I was given three months' worth, and an appointment was made for mid-April for the procredure to happen. However, it turned out that the referring doctor in January didn't do the referral properly, so I hadn't had a pre op assessment, so the procedure couldn't go ahead. So, I was out of the medication, and I asked the clinician if I needed more. I was told no, so, fine, I moved on.
But I was already bleeding again, a bit. I had my pre op assessment and needed some different medication for something else, which put the surgery back by two weeks while I saw my GP and sorted that out. The pre op nurse was quite arsey with me, as if it was my fault that this needed to happen first, when in fact it was her department who wouldn't pass me as fit for surgery. After my assessment I started bleeding again more heavily.
I have always had "bad periods" but honestly, I think people have no idea what that means. I can bleed through a super tampon in twenty minutes, and I regularly bleed clots that are the size of the palm of my hand. That started happening in the middle of April. I can usually cope, and it does often stop after a couple of weeks or so. But what made it different this time was the pain. On the 25th of April I was in so much pain that I couldn't speak or concentrate on anything. I went to bed early and concentrated very hard on lying still.
On Monday I was still in pain but it faded a bit so I thought, okay, the worst is over, I can cope. But on Tuesday morning I was trying to work, and the pain crept up again. I spent most of the afternoon in bed. I rang the gynaecology clinic and beg for more medication, and was given some more of the original medication from January, that I ran out of (and which I personally I think I shouldn't have been allowed to be without...). Lee had to go to the hospital to pick that prescription up for me.
Tuesday evening I again felt a little bit better. But then at 3.40 on Wednesday morning I woke up in the worst pain yet. I could barely breathe. I was bleeding horribly. I got Lee to phone an ambulance but there was a delay of an hour, so instead around 5am he drive me to the hospital. He of course couldn't stay with me because of Covid, so I had to go in alone. I was triaged quickly and thankfully given some codeine, which helped. I was told there was about an eight hour wait to see a doctor. Those are Tory cuts for you! Don't vote Tory!
However, I was moved from the waiting room within a couple of hours, and moved to a triaged bed. This was way better as the pain was better when I was lying down. A&E is a weird place to be, though, isn't it? I was moved up to gynaecology at around 10.30, as I was obviously aready under their care. I was the only one there and I felt a lot calmer. I was seen by a doctor there and she examined me and basically just said I needed to wait for the surgery to happen. But she did give me a prescription for painkillers, which has helped.
The next couple of days I had to take it so easy, I had to lie down and rest a lot and nap when I needed to. The pain hasn't been so bad, and I've kept taking all the meds as needed. I will say that I have just literally never known pain like that, and Lee said he hadn't seen me in that much pain either. I'm now waiting for a date for surgery, which will hopefully be before the end of May. I'm not sure what will happen after that, but I hope not a repeat of April!
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