I got my first period when I was 10. I remember being so excited as I was officially a grown up (if I'd known then that being an adult meant being tired all the time and paying bills I wouldn't have been as excited!) My mom was not as happy as she knew what a pain your monthly blood moon is. It was a year before my next period and mine were pretty spotty for the next few years. By the time I was 14, my periods were lasting for about 10 days, were very heavy and I had to stay in bed at least one day out of the month from cramps. I thought this was normal. I went to an all girls' school most of my life and, despite it just being girls, nobody talked about their bodies or their blood moons. It was taboo. I remember hiding my used pad in my bag at a sleep over because I was too embarrassed to put it in the trash at someone else's house.
My mom had never had any issues with her periods, just issues falling pregnant. My cousin and aunts on my dad's side of my family had always had painful heavy periods and both aunties struggled to fall pregnant with their only children. By the time I was 16, I seemed to be in pain all the time and weirdly enough, my pain was especially around my chest and on the right side of my body. I went to a gynecologist and she put me on the pill to regulate my periods. They didn't help much and I was still bleeding heavily 10 days of every month. At 17 my periods were almost unbearable and I was living on anti inflammatories and my hot water bottle followed me everywhere. Unfortunately, I started to have anal pain too - literally felt like someone was sticking a hot barbed poker up my butt and twisting. My mom and dad thought I was being a hypochondriac - no one has this much period pain right? I had gained a lot of weight at this point and my stomach constantly felt bloated and tender. My gynecologist finally paid attention when I sat in her waiting room and sobbed and screamed because the pain was so bad. She sent me for an ultrasound and they discovered that I seemed to have two cysts the size of tennis balls pressing against my ovaries. She put me in hospital that night. Funnily enough, I remember the technician doing the scan complaining she couldn't find my right kidney - I told her if she pressed on me any harder I would pee all over her table!
Imagine my surprise when I woke up after my first (of many) laparoscopies and found three male doctors and my female doctor all standing around my bed. Please note, when you have a disease like Endometriosis, you very quickly lose any prudish qualities because more people are going to be staring at your va-jay-jay then you want!
My laparoscopy showed some interesting things: 1) the cysts? They were actually the horns of my uterus (I have a bicornuate uterus) that had filled with blood over numerous periods and sealed themselves off. The doctors drained about 1 and a half liters of blood from me...and oh yes, I lost my virginity to a wooden stick while I was under anesthesia! 2) I don't have a right kidney. Apparently it goes hand in hand with having a bicornuate uterus. 3) my Endo was classified as Stage 4 (not that those stages actually mean anything!) and it is everywhere except on my ovaries. They even discovered Endo on my diaphragm and of course, no one was going up there to burn anything off!
So, I was put on the Depro vara injection (which I hated as it made me gain 15 pounds in 2 months and I was constantly in tears) and then I was swapped to Nordette. A very old fashioned birth control but, one that worked for me. I was skipping every second period as my doctor was worried about me having any.
I ended up with a new doctor as mine professed she wasn't comfortable with my case (at least she admitted it) and I went to a gynecologist who I loved until I left South Africa permanently. I have had two more
Laparoscopies and had the Mirena inserted under anesthesia. Because my uterus is in such a horrible state I couldn't have it put in just in my doc's room. At my last big lap, I had a urologist, my gynecologist and her husband who is an oncologist working on me. My Endo had glued my rectum to my bowels and the urologist had to go in and resect my rectum - I am literally a short arse! My gynecologist burned off as much of the Endo as she could but, of course wouldn't touch my diaphragm. Then I was put on a drug similar to Lupron and then has the Mirena inserted and am now on Seasonique and the Mirena. By the way, Lupron is the worst ever. I feel like I still haven't recovered from the side effects 3 years later.
So, I try only have a period 3 or 4 times a year. When I last went back to South Africa I saw my gynecologist and she agreed that the Endo has probably infiltrated my chest as I have chest pain, have problems breathing when it's time for the blood moon (even though it doesn't happen) and my right shoulder is agony for a few days of the month. I count myself as a lucky Endo Warrior as I seem to have a high pain threshold and my pain doesn't hold me back as much as it should be. But, the constant exhaustion and aches and pains are a downer. There are some days when I tell the world to go away and spend the day on the couch with pain meds (which I have to be careful of due to my single kidney) and my hot water bottle and quiet time. And some days I can manage the basic tasks. It's not a way to live and the Endo bloat belly is hard to explain to people - how you go from looking 3 months pregnant one day to fairly normal 2 days later. All I want to do is raise awareness of our disease and make people take us seriously - and for health insurance to understand that Endo is an actual disease! Promise I'm not making this up in my head.
Plans for the future? I have no chance of conceiving a child (that's why I teach - I get to spend time with children all day and then give then back when they're getting cranky!) so within the next year, I plan to head to Atlanta, Georgia to the Endometriosis Center there and have a hysterectomy and have as much of my Endo excised as possible. They have a good record when it comes to dealing with Endo on the diaphragm, hopefully they'll be able to tackle my chest cavity too!
I was lucky that I was diagnosed at an early stage in my life but, the lack of knowledge about our disease and the horrible treatment options have left me frustrated and sad. I never visit the doctor unless absolutely necessary as I'm tired of being ignored and being told that there is only one way to fix me - Lupron and laparoscopies. It's hard to explain to others that you have no energy because your body is constantly fighting itself and is in pain. It's hard to explain how gluten free is how you have to be because of your Endo (if you don't have Celiacs disease, you shouldn't need to go gluten free). It's hard to tell your husband that sometimes, it hurts to have sex and sometimes, all you need is some quiet down time. Endo puts a strain on everything in your life. It's great to see how much more is acknowledged now than 10 years ago but, we're still a far way from living our lives to the fullest.