I've been putting off writing this post for the past couple of weeks due to being the guest of honor at my own pity party. However, I've decided if I don't vent, there's a chance my head will explode and the last thing my landlord needs is to be scraping a dead girl's cranial lasagna from the living room walls.
I'm coming to you live from my sofa. With me are my laptop, an almost empty box of Cocodamol, Ibuprofen and my hot water bottle; I haven't showered in two days, I'm wearing a pair of Primark pyjamas complete with a number of questionable stains and my hair is in disarray to the point where if I went outside I'm pretty sure I'd get mistaken for Robert Smith.
I'm now five weeks post op. The surgery went well without any complications, although they had more to deal with than expected. Speaking to the surgeon in the pre-op lounge he told me that the plan was to rid me of a build up of blood filled cysts and endometrial tissue which was dotted around my uterus and ovaries; this was carried out successfully. The next day, before being discharged from the hospital, I found out that in addition to this, they also had to remove adhesions that had fused together my uterus and bowels, to the point that my uterus had literally folded over onto itself.
I woke up after the op in agony but in high spirits, proud that I had gotten through it all on my own. I was in such a great mood that I started giggling and dishing out compliments to the nurses and anesthetist in a morphine induced daze. I imagine had someone recorded it on their phone, it would've gone viral like those videos you see of people high as fuck after getting their wisdom teeth removed.
The first few days were just as difficult as I had anticipated, if not more. There's nothing that could possibly prepare you for not only the physical strain, but the mental strain of having to teach yourself how to walk again. It's exhausting to say the least.
I needed constant supervision. My best friend came to stay with me for the first couple of days while my boyfriend worked, and my mum arrived to take over from her at the weekend. I can't thank all three of them enough for being at my every beck and call.
I needed help getting up out of a seat and sitting back down. I needed help walking to the bathroom, and then pulling my underwear up and down after using the toilet. I needed help getting in and out of bed. I needed help bathing and then dressing myself. I was essentially a toddler trapped in an adult's body for those first four days, temper tantrums included; I'm a little woman with little patience.
After those first couple of days, things started to look up. I was walking around by myself, albeit with terrible posture, but I was moving at a quicker pace by the day. I was less squeamish which meant I was able to look at my incisions and clean them without suddenly getting light headed. I was getting my strength and stamina back slowly but surely and was able to feel a little more comfortable. It all seemed to be going well until eight days after the surgery, I felt a twinge on the left side of my pelvis.
My heart sank immediately. That twinge felt all too familiar, exactly like the painful sensations caused by my endo, and it began to make itself more apparent over the coming days. I tried to ignore it; necking pain relief tablets eight times a day, trying to push the thought to the back of my mind, convincing myself it was probably just my insides healing. I imagined it as two nerve endings sending a shock through my pelvis every time they made a connection, like in those action movies when you see a dude hot wire a car and the cables make that little "BZZZT!" sound.
I continued to ignore this pain for the next three weeks. I was now at the point where I was alone as my best friend and mum had both returned home after helping me out and my boyfriend had returned to work full time after essentially being a stay at home carer in their absence. My life felt like it reached a sudden stasis of stillness.
My mental health started taking a serious hit around the third and fourth weeks. I was at home, feeling lonely and bored with too much time on my hands but not enough of a concentration span to keep myself occupied, nor enough physical strength to do much housework. Days began melting into one another and when I wasn't scowling at my still-swollen belly in the mirror or staring aimlessly at my tv, I was comfort eating and oversleeping, all the while continuing to ignore the progressively painful pelvic sensations I was experiencing.
This week I've had a little more energy and have been more active at home, doing housework and have been able to venture outside for longer periods of time without feeling as exhausted. I made the decision that next week I'll finally be returning to work because for one I can't afford to stay off any longer and two, I can't stand being stuck at home feeling so unproductive.
Three nights ago though, I experienced pain and discomfort on a level so extreme that the only thing I could possibly associate it with would be an endometriosis flare up. White hot pain started coming in waves, radiating from my abdomen to my lower back, lasting for about five minutes at a time and then passing briefly before returning again. I've never endured labour pains, but this was what I imagined contractions to feel like.
My strongest painkillers did barely anything to relieve the pain. I was squirming uncomfortably for over an hour clutching my hot water bottle before the pain got so intense that I ended up doubled over, sobbing on my bedroom floor. I had no option but to focus on my breathing and wait for it to pass, which thankfully it eventually did.
The same thing happened again this morning. My insides contracted and throbbed so intensely that it woke me up just after 5am and there I was again, lying in a heap on my kitchen floor while I waited for the kettle to boil so I could fill up my hot water bottle.
"Something's not right here," I was thinking to myself. For a few minutes I seriously considered calling an ambulance because the pain got so intense that everything started going out of focus. The pain passed long enough for me to fill up my water bottle, take some Cocodamol and climb back into bed.
At that point I thought to myself, maybe this is more than just lingering pain from the surgery. Maybe this is my reproductive system returning to it's usual state of being - contracting and bleeding; internal organs fusing themselves together again.
This is why I'm writing this post. I'm angry. I'm upset. I spent the early hours of this morning reflecting on my endometriosis journey and I just wanted to scream into my pillow because I can't pinpoint what is causing this pain.
The whole point of that surgery was to improve my quality of life, if even just for a few months, yet the last five weeks I've experienced nothing but pain that's, if anything, actually been worse than any pain I've had in the last six months combined. When does it fucking end?
Not to be melodramatic, but I feel like I've been somewhat robbed of having a decent, normal life. It's been tainted by chronic pain for the last six years and before that was a monthly occurrence of agony brought on by my period. This illness has effected my social life, jobs, relationships and my mental health. I feel like a prisoner inside my own body, limited to what I can do on a daily basis.
I'm sick of spending so much time in waiting rooms, whether it be at my local GP or in hospitals. I'm sick of being told what a "strong" woman I am. I'm sick of people not knowing what to say to me when they ask me how my day is going and I get a little too honest with them and tell them I'm not feeling so good. I'm sick of feeling apprehensive to leave the comfort of my own home, fearful of how my day will pan out. I'm sick of having to wear unflattering baggy clothes because nothing else in my wardrobe fits me. I'm sick of feeling exhausted no matter how much sleep I get. I'm sick of pain relief tablets making me constipated and having to take laxatives on a nightly basis.
I'm sick of complaining, but above all, I'm sick of having to apologise for complaining.
Surely there has to be something more that can be done? I know there are women out there who have it so much worse than me but how is it normal to just throw pain relief pills at someone and expect them to just learn to deal with it? I've spent years struggling and it doesn't get any easier.
Therein lies the reason I haven't bothered visiting my GP this week, because I know it's just going to be a case of being given more pain relief and told to just accept it.
So, that sums it up. I'm planning on returning to work in a couple of days but I have the recurring threat of another "flare up" knocking the wind out of me at any given moment, in which case I'm sending myself straight back to the hospital again and screaming at whoever will listen to me until they investigate what's wrong.
This isn't recovery, this is a relapse with no foreseeable intervention.
