I AM 1 IN 10!
I am a 39 year old female frontline police officer from the UK. I’m also a daughter, a sister, a girlfriend, an aunt, a pet owner and an avid hiker amongst other things. I’m independent, strong willed and have always struggled letting others help me – never wanting to be a burden on them. All of these things are parts of me. Recently though I’ve learned of another big part of me. It’s been there for years but only diagnosed as recently as October 2020. Endo-ME-triosis. I’ve learned how to spell it, how to say it, and am currently learning how to live with it.
I had my first period at 10 years old- heavy from the start. In adult life however I learned what a real struggle felt like with troublesome periods. After 20 + years of having them you become a pro. I call the worst of it the ‘white knuckle’ pain. Where you’re cramping inside and feel the need for the bathroom. You sit there and writhe in pain waiting for the imaginary razor blades to pass. There’s blood sometimes and there’s almost always sweat and tears. Usual home treatment for this situation- put myself to bed and in an hour or so it will all pass / I will pass out. Whichever comes first.
Around 2014 I approached my GP.
Is there even anything wrong with me or do I just need to take a pain killer or two? Well the last was pretty much the Doctors proposed plan. So off I went and dealt with it by myself. Bouts of intermittent excruciating pain. Brace up and hope it happens on a day off so I can just hide in bed until it passes.
OUT OF CONTROL
So a diagnosis was one thing and quite the relief to be honest. I hadn’t made all this up after all and I shouldn’t have just sucked it up all this time!! Now for a plan to combat this. I had been placed on the contraceptive pill July 2020 in order to stop my periods and give my body a break from the internal bleeds. That would have been all well and good if it had actually stopped my periods and if the wriggly wee hormones had stayed down in my reproductive area. Break-through bleeding was daily. Unannounced periods came when I hadn’t even stopped taking the pill. Unfortunately the hormones decided they were in control of almost everything about me! Sitting in a board meeting in work and it’s my turn to talk. No actually it’s my turn to cry! Right, apologies made, tears wiped away and I just have to carry on. I’ve no control over this so I just get on with things as a bumbling mess. Back to the consultant I go for a review of treatment.
December 2020 we decide to give the Mirena Coil a go. Focus the delivery of the hormones to where they need to work and hope it controls the bleeds better! 31st December 2020 – Happy new coil insertion, happy new year! The insertion was uncomfortable. I have a high seated cervix therefore the consultant struggled to get it home. After a wrangle it was in. I brushed myself off and went back to work. I was feeling positive that this would bring me better control of my periods avoiding in-work bleed through disasters and subsequently my life in general.
Endometriosis: A condition where endometrium, tissue from the lining of the uterus, forms and grows in places outside of the uterus.
One week one from coil insertion – 7th January 2021 I’m on patrol driving the police car. I feel a little wave of pain come over me. I continue maybe half a mile. I’m OK. It’s not a massive pain attack but I don’t feel right. So I pull in. I sit there a minute and suddenly, SURPRISE, it is a massive pain attack. I remove my heavy utility belt. That gives no relief. I undo the heavy body armour. That doesn’t help either. It’s time to admit defeat and ask my partner to drive me back to base. I waddle to the medical room to find somewhere to lie down – of course it’s locked. Instead I waddle back to my office and lie on the floor. I’ve got the sweats and am blowing hot and cold. My buddy leaves me in peace because I know this always passes within the hour – right? Two hours later I’m in A&E. In a wheel chair desperately hoping not to catch COVID. Scans and pokes and 6 hours later – nah you’re fine. Just a bad day off you go. …. OK then? This didn’t feel right. I didn’t feel right.
Two days later, 9th January 2021, I’m feeling no better. I call the out of hours doctor and end up admitted to hospital.
Long story short the cysts I knew about on both left and right ovary are still there no problem but they grew a new friend. It’s 10 x 10 x 18 cm and lives in my abdomen. It didn’t like it when the coil came to stay so got itself infected and decided to bring the party down.
Blood infection markers in the 500s. I’m in hospital for 1 week on IV Antibiotics then home (on my birthday!) for out-patient IV antibiotics for another 10 days. So, like I said earlier, I had never been in hospital before. I had never really been ill before so I didn’t really take on board how ill I was this time. I knew I had endometriosis and I knew it was being managed. The infection was a bit of a surprise to me though. Turns out 1 in 1000 women react this way to the insertion of a coil – I should have done the lotto. During my outpatient IV treatment I felt pretty rough. Night sweats and lethargy. Tested negative for COVID so we put it down to just feeling rough on antibiotics. Nopey that was wrong too. At the end of the 10 days my blood tests revealed my infection markers had gone back up to where they had been when first admitted to hospital.
Next day on Monday 25th January 2021 I’m back in another hospital! This time The Big Bad Infected Cyst is getting surgically drained!Yummy. I didn’t even know that was a thing. Surely a bit more IV would fix it? No I’m not well and if they don’t get the infection out I’m going to get worse and they can take the coil out while they are at it. Scans had revealed that my over achieving Endo cells had attached themselves onto parts of my bowel and joined it to my reproductive organs! How kind! This made complications for surgery and meant that, not only did the Gynae surgical team need to get ready, so did the general surgery team to deal with bowel issues. The risk of losing part of my bowel and therefore it’s functioning meant a risk of ending up with a stoma bag etc. At my age this was not a nice thought. A few hours on the surgical table and I came through well and was discharged from hospital four days later.
Today, three weeks from discharge, I’ve just had the final dressings taken off my wound. It was a vertical incision from my belly button down to the landing strip which makes it difficult to bend or pick up that dam pen I’ve dropped three times already today! My partner has arranged working from home to care for me (no mean feat I can tell you). I’ve had family and friends send flowers and pop over for Covid friendly, through the window, chats. I couldn’t have done this without you all so thank you. I am so humbled by the care I have received. The NHS is worth their weight in gold. I have a new view on accepting the help of others (when you need a stranger to help you clean yourself after using the toilet it kind of puts the fragility of your health and independence in perspective).
I understand now how letting things go on too long isn’t a sign of strength after all. It has, in fact, meant my endometrial cells have had far too many years of growing wherever they want, cysts growing as big as they want and the endo cells fusing my organs together! This means that the traditional route of Hysterectomy to remove the reproductive system is now more complicated yet not an impossible option to me. I am currently infection free with three drained cysts. I am on an injection to stop the reproductive organs working for a bit and in 6 months’ time we will look about what to do with the rest of what’s going on in there. I am grateful for this break in my periods. I am grateful for the pain free drained cysts. I am indebted to the NHS, my family and my friends who have supported me through the illness and recovery. I’ve got to thank Andrea founder of Lady Talk Matters. A life-long friend and a great steering hand through the storm of all this.
Ladies please don’t leave it too long. Don’t suffer in silence. Don’t be afraid to be honest with how bad your pain is or how heavy your periods are. And don’t be afraid to insist on further tests.
I would never have known about the growths inside me without pushing forward and leaning on our amazing NHS. Lean on your sisters too. Talk about your experiences and raise awareness. I really only started to get fed up with my pains after a season of fund raising for Lady Talk Matters. Look who’s talking now!
I’m a real member of the club now and no longer just an ally. We’re in this together!
