Life

Endo Warrior – A Year On

This month marks a year since I had surgery, as well as it being Endometriosis Awareness Week at the start of March, so I thought I’d share my story. I wrote this last year – I shared it elsewhere at the time, but I thought it was about time I published it here, especially since it’s such a huge part of my life now.

 

Here it goes…

 

I’ve always been good with pain. I mean, it’s not something I enjoyed, but I’ve always just addressed that I wasn’t feeling my ideal self, and moved on. I’ve broken numerous bones and am constantly the human who stubs her toe or bashes her head on over-hanging cupboard doors; I’m clumsy, so pain was something I’ve always been used to. That was until February 2016 when I collapsed on the floor at work from an excruciating stabbing sensation in my abdomen. It felt like all my organs were twisting tighter and tighter, tearing me open from the inside. I now knew how Kane felt in Alien’s infamous chestburster scene. I couldn’t move and just huddled in a ball on the floor, waiting for it to go. It didn’t fade and I knew it was time to go to the hospital.

A nurse came and did the usual checks, as well as testing my blood and conducting an ECG. I was scared for what was about to happen. Was I going in for emergency surgery? I fretted about needing time off work. What if something has gone terribly wrong with my body? I was anxious. I waited and waited, watching hospital staff rush around from patient to patient – the pain slightly subsided, only to be taken over by fear. The doctor eventually came over to see me and I was shaking with nerves and sickness, and probably from the pain too. She looked down at the piece of paper in front of her, and that’s when she told me; there was nothing wrong. According to all the tests they conducted, I was healthy. It wasn’t my appendix, or an infection, or anything. I was confused. I was angry. How could there be nothing wrong if I was in so much pain? It didn’t make sense. I was sent away with a high dose painkiller and told to come back if it didn’t ease in a week.

I spent that following week after my hospital visit extremely drugged up. I had never been on anything stronger than shop-bought painkillers before. I was pain free, but I was also sleeping my days away. I came off the painkillers and realised that everything had gone. The pain had mysteriously disappeared, and I started to second-guess myself over what had happened. Was the pain that bad? Could it have just been my period? I’d never experienced anything like that before and I hoped I never would again.

November 2016. I was starting a new job and couldn’t be happier. Me and my fiancé had set a wedding date, and life in general seemed to be on the up. Then came the curveball – y’know, the one life throws at you when everything is finally working out.

 

*NOTE* A lot of women don’t like to talk about their periods. It’s not the sexiest topic of conversation, and most of us seem to feel embarrassed talking about anything happening with our lady parts. Admittedly, I used to be one of those women, but since my diagnosis I now realise how important it is for women, and men, to know their bodies; to listen when they tell you something isn’t right. Don’t feel afraid to talk about it. And ladies, if your period is painful, don’t shrug it off as being ‘normal’, because it could be endometriosis.

 

Back to November, my cycle had been and gone, but I noticed it had left behind a faint ache in my lower abdomen on the right-hand side. It wasn’t particularly painful, so I decided to just carry on and hope it would eventually disappear. It didn’t; it got worse. The faint ache gradually started moving towards my lower back, and then down the front of my leg. The ache got stronger and was sometimes equipped with sharp, stabbing pains across my abdomen. Some days were better than others, until there were no good days. I was given painkiller after painkiller by my doctors until they just stopped working. I was in agonising pain throughout the night, which meant I hadn’t slept for weeks – which then turned into months. Another hospital visit and an ultrasound scan later, revealed a presumed large ovarian cyst on my right ovary. I was told to wait and see if it would just miraculously disappear by itself.

February 2017.  Christmas and New Years were spent in pain and tears. My social life was non-existent because I was in pain every single second of every single day. I was miserable. Depression and anxiety were at an all-time high because I was terrified this pain would never go and if it didn’t… well, I didn’t think I could carry on. It was a very low point. I was on a concoction of prescribed painkillers that made me feel drowsy and nauseous, but still didn’t stop the torture I was experiencing by my own body.

March arrived and I decided that I couldn’t carry on feeling imprisoned by this unwanted thing growing inside me. I hadn’t slept properly for months.  The pain was taking over my whole life. I couldn’t enjoy TV, reading, or just generally being around those I love, because the pain was controlling me. I had lost all other aspects of myself. I pushed my consultant for an operation date to remove the cyst.

On March 13th 2017, I had my laparoscopy. I was told beforehand that they wouldn’t be sure what they would find until they went in. The plan was to remove a large ovarian cyst, but that turned out not to be the case at all. When I came out of surgery, I was pain-free. Sure, I was sore from surgery, but it wasn’t THE pain. Once I had escaped my drowsy, incoherent state, the consultant came over to my hospital bed to explain what they found.

 

“It’s endometriosis”

 

Endometriosis is where tissue, similar to the ones in the lining of the womb, is found elsewhere in the body. It’s a chronic condition that can have a significant impact on your life. It is said to affect 1 in 10 women, though most will never be diagnosed.

I had endometriosis. There was no cyst – instead, the endometriosis had overtaken my right fallopian tube, causing it to swell (and look like an 8cm ovarian cyst) and wrap around my right ovary. The stabbing pain I was experiencing was a result of it “twisting” on the stem. The unbearable ache in my lower back and the top of my leg was down to it pushing on a nerve, and my bladder. There was no cyst to remove, but they did manage to reduce the swelling of my now defunct right fallopian tube, and remove any build-up of endometriosis they could find. I wasn’t cured, but for now, the pain was gone.

To prevent this process from happening again, I’ve been instructed to take the contraceptive pill back-to-back, which essentially means avoiding periods in the hope of relieving any future pain. I’ve been told that it might take longer for me to get pregnant, and that if I do I’d be at risk of an ectopic pregnancy. The reality of it all, is this:

 

Endometriosis is hard to diagnose.

The only way to be diagnosed with endometriosis is through a laparoscopy. I had 4 1/2 months of constant excruciating pain, but after reading many endo stories online, I now know many other women have suffered for years before a diagnosis, and for that I am grateful for my quick treatment but equally outraged for others who had to wait. It’s also important to remember that every case of endometriosis is different, and while some may not experience much pain, for others it can affect their daily life.

 

The fear never leaves.

I don’t experience pain the way I used to, but I still have bad days. Mentally, being diagnosed with a chronic condition is debilitating. I’m not at a stage where the thought of the pain coming back doesn’t enter mind my mind every day, yet. I’ll get there, but I’m not sure the fear will ever go.

 

The other symptoms.

The problem with endometriosis is that pain isn’t the only symptom. I suffer terribly with chronic fatigue. Feeling weak and exhausted is not fun for anyone. Every time another symptom appears, I’m constantly asking myself if it’s endo related or a sign of something else. You never really understand endo, and that’s one of the hardest things to live with.

 

The worry that a baby wouldn’t survive inside me.

I’m not completely ready to have kids, but I want to be able to when I am. I have this fear that if the endometriosis attacks my left fallopian tube, and then my ovaries, I’ll be left with a very inhospitable place for a baby to grow.

Since the first mention of endometriosis uttered from my doctor’s lips, I have tried to make myself feel better by telling people that I’m just “too much woman.” Medically, it doesn’t make sense, but in my head, it does. It takes a strong woman to have to live with endometriosis. Yes, it’s not life-threatening, and there are way more terrifying things to be diagnosed with, but that doesn’t make it any easier. I’m still learning how to deal with all of this, but I do know you have to be strong. You have to be a warrior.

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