Our Endo stories, diagnosis, treatments, procedures, remedies etc.
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December 1994, I started my periods. One morning I woke up and just found my bed covered in blood. It totally threw me. I soaked through my first pad in less than an hour. I progressed from regular towels to the super-heavy absorbency ones my mum had in her cupboard and soaked three through that first night. It was the worst Christmas present that I ever got.
Fast forward to the first week of July in 1996, I had finished all my GCSE exams the week before and was free for the summer. On the Monday of that week I decided to go shopping with my mum. My period started just before we left the house so I took a painkiller and tried to ignore it. Somewhere on the ten minute walk from the house to the town I experienced the kind of pain I never knew possible. Where the agony came from I have no idea but I genuinely thought I was going to die. I spent the rest of the day, and the next two, laying on the couch in agony. From then on, every month was spent the same.
A couple of years passed. I finally went to the doctors in '99 and was prescribed Tranexamic acid which did absolutely snothing but tasted great (vanilla flavoured tablets!) then when that didn't work they forced me to go on the pill, claiming it would "solve all my problems" when all that happened was that I bled non stop for weeks and weeks until I passed out through pain and anaemia.
I finally got the doctor to send me to a specialist in early 2000. I met my husband while I was in the process of going through hospital visits to try to find out what was wrong with me, but the specialists used the 'too young' line on me all the time. I was 'too young' for this, 'too young' for that... eventually they did an ultrasound which showed cysts and sent me away with a packet of mefanamic (sp?) acid, which did even less than the Tranexamic acid and didn't taste half as nice. I had an operation to check for fibroids and polyps which found nothing, and finally was put back on the pill by an Evil Specialist. Once again, the pill made me bleed and bleed and in despair I cried and screamed until they agreed to do a laparoscopy just to 'shut me up'.
"We won't find anything though," he told me, "because you're to young to have Endometriosis."
So there I was, finally, in the summer of 2000, about to undergo a lap. I had been informed about a half-hour procedure with two small incisions and a week's recovery time. What actually happened was that I was in surgery for about 2 and a half hours and woke with 5 holes in my stomach. There had been a lot of endometriosis attaching my womb to my bowels, and also a cyst had grown around one of my tubes, causing it to somehow twist around itself and completely ravage it.
At first I was so relieved to have a diagnosis. I'd heard about loads of women for whom a laparoscopy had been the equivalent of a 'miracle'. However, my pain was actually worse in the months following the operation. I went on the pill - a different kind with hormones that DIDN'T cause me to become a one-woman red sea - to at least regulate when I was going to be ill. The hardest part though was coming to terms with the implications for my fertility. The specialist, at my follow up appointment with his wonderful bedside manner informed me that there had been a lot of damage to the tube and it most likely was not viable. I would need tests at a later date when I was ready to conceive.
I just felt deflated and depressed, especially when I told him that the pain was no better. He told me he would send through a prescription to my GP for ‘something to sort that out’ and sent me away.
A week later, a prescription for more Mefanamic Acid came through.
I had a second lap in 2002, which was one of the worst experiences of my life. I can't even stand to think about it now.
In 2003 I was persuaded by my GP to go on the Depo injection. I had never heard of it. I was stupid for agreeing to it there and then, I should have gone away and researched it for myself, but it's so hard to say no to a doctor. He told me the only side effect was that I might gain some weight, and that it would stop my periods completely. That sounded like a dream come true! So I agreed, and had the injection. A week later I started bleeding, and just didn't stop. I went back and begged to be put back onto the pill, but he refused. I finally went to a different doctor, who put me back on the pill.
I tried many different brands between then and 2005. Only one brand ever stopped my bleeding completely and that was withdrawn because not many people used it any more. My painkillers were also banned in this country around 2004-ish.
Despite taking my pills religiously the hormone levels were never strong enough to stop my breakthrough bleeding, and I must have started to experience breakthrough ovulation too because in June 2004 I had my first miscarriage while on the pill.
I had three more losses and a chemical pregnancy before we conceived our eldest daughter. I never, ever stop counting my blessings for being able to have my girls. My youngest was a planned shock - it had bee so hard having our first that when she came along we were totally dumbfounded.
My endo has never really improved any. The pain, heavy blood loss, painful sex, leg cramps, stomach issues, and now chronic O pain too are all still there. It has been a long time since I last had surgery and I am doing my best to avoid it at all costs. Until this board was added I hadn't felt able to talk or even think about the impact it has on my life in years. I'm really glad we have a place to talk about it now.