One of my readers asked if I’d like to share her story as part of endometriosis awareness month. She shares a powerful story about working with endometriosis that we can all relate to. Thank you for sharing your experience Grace.
My period started yesterday. No big deal you might think, it happens to every woman, every month, for about 35 years. Unfortunately for me, this is a big problem. This warns me that I’m about to experience around 24 hours of agonising pain, followed by several more of aching and exhaustion.
You have to understand my normal to understand why my periods are such a nightmare, and it all started back in the summer of 2008. I was 18 years old, had just completed my A levels and I had an offer to study medicine at UEA, providing I completed a foundation year first. The first twinges of pain had started back in the February but I had brushed them off. I had a job at Nando’s, and ended up leaving early one Saturday in June with nasty period pains, with no idea of the cause.
I actually went to the doctors to get a sick note the same day I got my A level results, I hadn’t worked since July.
The last eight years with endometriosis have been exhausting. Foundation year, Laparoscopy 1 with gynaecologist A, starting medical school for real, laparoscopy 2 with gynaecologist B, zoladex, more zoladex, another laparoscopy this time with removal of endometriosis and then a repeat of my final year which required one more course of zoladex. I finally got married and then qualified as a doctor in July 2015.
I’m now a foundation year 1 doctor working in acute surgery in Hull. In reality this means I’m a very junior doctor who lives on the ward, making sure everyone is taken care of before and after their surgery.
I do my best to look after myself as well as I look after my patients, but I actually have pain every day now.
Sometimes it’s a low back ache, sometimes it’s a sharp stab in my upper thighs, sometimes it feels like burning through one of my buttocks, the only guarantee is that it will be there at some point and it could strike at any time. I counteract this constant pain by taking painkillers. Strong ones, paracetamol and ibuprofen don’t even touch it.
I survive most days by taking slow release tramadol, day and night, which keeps me able to work and socialise and live mostly like everyone else. I still feel the pain, but I can handle it when it comes and I sleep well. If a pain attack hits at work, I usually let whoever I’m working with know and volunteer to take on the administrative, computer based tasks until it passes.
However, soon after the bleeding starts, the cramping comes. This isn’t a little tightness in my tummy that can be relieved with light exercise, this feels like my pelvis is trying to expel all of my organs.
The cramps come in intense, nauseating waves where I imagine that maybe this is what labour feels like.
There’s intense burning in my lower back, my uterus contracting hard and I try to resist the urge to crouch on the floor and make strange groaning noises. Instead, the colour drains from my face and I look for somewhere quiet to curl up.
Every month I dread this day, trying to predict when it will be and minimise its impact on my life, making sure I have plenty of Deep Heat patches and reducing my social commitments. This time the crushing cramps started late at night when I was working a 10am-10pm on-call shift, unfortunately several days early but thankfully only 30 minutes away from the end of my shift.
I manage to hold it together until the night doctor comes to take over and I can finally go home. I take some oral morphine, my only option since I’m already on full dose tramadol and curl up with my electric heat pad.
Exhausted, I eventually collapse into bed for a restless night with multiple wakings. The morphine eases my pain and makes me drowsy, but like alcohol it makes sleep quality poor.
I wake up to my alarm, groggy from the restless night, still experiencing the same horrendous cramps now that the morphine has worn off. I have a decision to make. Do I let my colleagues down and call in sick for my 12 hour surgical on call shift, where one of them would likely have to cover the extra hours for me? Or, do I let myself and my patients down by dragging myself to the hospital when I’m clearly not fit to practice today? Too stubborn to pick up the phone and determined to push through the pain, I get myself off to work.
It’s not at all surprising that I only lasted four hours at work today, to me or to my poor husband who would have begged me not to go if he thought I would have listened. As it became more obvious to my colleagues how unwell I was, they encouraged me to hand my bleep over to them and go home. HR said they would try to find a replacement for the out of hours portion of my shift. I thanked them for their support, grateful to work with such lovely people.
They are part of the motivation for me to write this, my colleagues are all health professionals and yet they know very little about how this illness really affects people.
All they know is what I can share, and sometimes that’s easier for me than others.
Back at home I’m feeling tired and sore, but mostly sad and disappointed in myself that I can’t make it through a day at work because of something that is supposed to be “normal”.
When somebody says I don’t look well, I often say something like “my Endometriosis is flaring up” rather than admit that this is what my periods are like. I hope next time I’ll find the courage to pick up the phone and admit how sick I am before forcing myself into work, but I can’t make any promises.
I hope even more that next month my period won’t come at all and instead I’ll find the second pink line I’ve been waiting for. Not because it will cure me, but because of the relief and joy it will bring. The pain is easing now, fatigue is filling the space once occupied by agony, and I have around 30 normal days enjoy before it all starts again.
Thank you for your description of what your days are like. I feel like you wrote about my daily life. The pain I experience daily only varies in intensity. It’s always there. I take tramadol when it’s moderate, with an anti-emetic because all opioids make me nauseous. I have Percocet for severe pain or when I have gone too long without pain meds and find myself in a crisis. I’m scheduled for my fourth surgery in a couple of months. This time my left ovary and uterus via laparotomy. This surgeon came highly recommended as someone who will take their time during the surgery to try to get all of the endometriosis. It has been about 35 years of pain, no biological children and I am done. I’m holding on and working until the surgery as it gives me a reason to get out of bed. It’s very difficult to help other patients when all you want to do is curl up in bed. I’m very blessed to have a strong support network of family and friends. When I’m not working, my friends will pick me up so I can take pain meds and enjoy my time out of the house. I’m doing my best to keep a positive outlook. Look for the good in each day. I have some dark times. What keeps me going now is the hope that this surgery will provide me with the relief I have longed for.
I’m pre-menopausal and have served my time with worsening endometriosis over the past 35+ year’s. Right from my 12th birthday (oh happy day…..Some present!) I have retreated into the foetal position, drugged up and wracked with pain for 3 days to 1 week of EVERY month. I have probably spent what amounts to year’s of my life in the bathroom mostly in a cold sweat and practically passing out from pain . UNTIL NOW…. I’ve tried for so many years to get my doctor to take this pain seriously and actually do something about the cause instead of immediately just thrusting a prescription at me. I was informed some 25 year’s ago that I had quite severe endometriosis, ovarian cysts,fibroid. …and no acceptance of my anguished request for actual help until a visit to hospital recently in overwhelming pain led to me being admitted to a gynae unit, investigation by hysteroscopy and laparoscopy and the realisation that my bowel is stuck to my uterus ovaries and ligaments with endometriosis and a quick decision was made to remove part of my bowel along with a full hysterectomy. I can’t help feeling that more decisiveness earlier on would have saved me years of agony and given me a better quality of life sooner. Needless to say I can’t wait to start the next pain free (?) chapter of my life…..bring it on. Best wishes to all fellow sufferers.