What Endo Looks Like - Steph Yates
Updated: Mar 22
I remember having lots of tummy aches as a child, and my mum saying they were just growing pains. I got my first period at 11 and they were painful, irregular and heavy. I regularly had blisters from burning my tummy with hot water bottles. I remember I bled for the whole month when I was 15. I would get home from school and just sit on the toilet because there was just so much blood. I went to the doctor and got iron tablets. That’s all! Without my mum knowing, I went to another doctor and went on the pill because I was just so desperate to not have such horrendous periods! Didn’t work, and I got massive migraines. I also started vomiting during my period, so I couldn’t keep any painkillers down. Once every few months I would get what I called my ‘earthquake’. I would feel feverish, sweat profusely, shake uncontrollably, vomit and have explosive diarrhea. This went on for a few hours. In between the worse bits, I would lie as still as I could because if I moved, the pain would spark up again. I’d go from having a very hot shower to being shivering cold, to sweating and stripping all my clothes off, and then freezing and needing two or three blankets. I also had lightning pain flashing down to my knees. It was exhausting! (Having had two children, labour was not much different.) I nearly had a burst appendix at 17, because I thought it was just period pain. I used to have a lot of urinary tract infections, and terrible thrush too. I also had many tests come back as negative for urinary tract infections. I eventually went to a urologist (at 28) who ablated my bladder as he said it was red raw inside. The procedure was meant to encourage healthy tissue growth.
At 24 I had a #cyst the size of a golf ball removed. Nothing else reported as unusual. I wonder if he bothered to look! The worst thing that I’ve found over the years in seeking medical help, is being minimalized and dismissed. I thought I was going crazy. I was really desperate to find solutions to my horrible periods and continual phantom urinary tract infections. I resented my body being hijacked once a month. There was about one week a month that I felt normal. I was otherwise building up to a painful period, having a painful period, or recovering from having a painful period. I changed my diet (did I have IBS ?) I took calcium for the cramps in the week leading up to period- that sometimes worked. I got really fit, but that didn’t work either. I had one specialist tell me, after a very quick press on my stomach, that there was nothing wrong with me and he recommended a breathing coach because I was shallow breathing. I was breathless at that appointment, because I was rushing to tell him everything that had gone on! I managed to have children at 31 and 35. At 38 I had a lovely male South African doctor who was concerned I was on too many pain meds. He gave me a questionnaire about my pain, and I explained what my usual period was like his jaw dropped. He lowered the dose of painkillers as they were incredibly constipating, and put me on antidepressants as part of my pain management. He referred me to a specialist. Finding out that I had #endometriosis was actually a relief and empowering for me. I wasn't going mad. There was a reason for all these things that I had over the years. It all made sense and I knew what I was up against now because it had a name. I had surgery within the month, and a #mirena. The surgeon said she wished I’d given her permission to have a #hysterectomy because my #uterus was ‘completely stuffed’ and she had no idea how I’d managed to have kids. I also had endometriosis pollops and scarring over the surface of my bladder (explained why my bladder had been so internally raw 10 years previous). I chose a mirena because I wanted the option of having another child, and I was vain and didn't want to put on weight that I thought went with having a hysterectomy. Well, I gained several kilos within a few months, but everyone told me that it couldn't be the mirena (even though that was the only thing that had changed!) I remember my boss tearing up when I told him why I was having time off for the surgery. His wife had suffered terribly from endometriosis, and he was well informed. He acknowledged how strong and amazing I was, and that he wish he'd known, and was in awe how I could even function let alone have a great attitude. It was so lovely to be validated! Anyway, my periods stopped. I had a bit of spotting but it worked perfectly. After a year or so I had a ‘weak bladder’ problem that became a serious bladder problem. It impacted my ability to exercise and I put on more weight. I had another mirena at 41. By 45 I’d had enough of the bladder drama and had questions about my mirena.I went to VP Singh in Hamilton for his advice. He is so kind and I highly recommend him. I had a hysterectomy and a sling on my poor old bladder. The six weeks at home (not the four that I thought would be plenty of time-ha) was sooo boring and frustrating. At 53 I’m happy to say that I have never looked back. I didn't have any more children, and I regret not having a hysterectomy at 38. I have no more endometriosis flares of symptoms, and no more pain or incontinence. I’m one of the lucky ones that it has been resolved. I really encourage anyone still on the journey for answers to find someone who will listen to you. Don't put up with being dismissed by health professionals! You live in your body, you know all your pain and symptoms aren't normal. You deserve to be taken seriously and have the help you need.