Endo...It's...

I was inspired by a tweet by Life-With-Endo to write another post about living with endometriosis (I promise I'll write about more trips...once I go on some). Everything I say is from my own account, I am not speaking for all endo-warriors. I have also learnt a lot about this condition since my original post.

(Incase you don’t make it to the end...yes endo sucks but I ultimately love my life)

There’s a common misconception that endo is basically extremely painful periods, this is false. The cells are not exactly the same as those that line the uterus but they are similar. They do bleed during menstruation, this is painful as the blood has nowhere to go so it just pools in different areas of the abdomen cavity. These patches of endo can be super deep in the tissue, causing scaring, fibroids and nodules. These in turn can cause pain at anytime, this can range from cramp to feeling like you’re being stabbed with a hot poker. 

I have rectovaginal endo, it’s in my Pouch of Douglas (still mad at him) and my uterosacral ligaments (USL). This is generally deep infiltrating endo, it needs to be cut out rather than ablated with lasers (what I had done), I recently read an article which stated using lasers can cause nerve damage in the area. Ablation is not suitable for this type of fibrotic endo. My discharge letter, sent to my GP, said that it had been ablated where possible (I was under the impression he’d gotten it all post-op). This makes me think he didn’t touch my USL, or if he did he just got the tip of the iceberg. 

Flare ups can be random but there can be certain triggers; working a 12.5hour shift on my feet in a busy, stressful environment often does it (why I only work part time as two shifts in a row pushes me to the edge but I love my job so I do what I can); intense & deep sex can occasionally leave me curled up a few hours later...I’m lucky though as I don’t experience pain during the intimate moments as so many sufferers do...also personally, totally worth it; pushing myself with physically activity, even just deep cleaning the house can have me reaching for my TENs machine and co-dydramol. Sometimes though, with no warning and no obvious reason, I feel like I’ve been punched in the stomach by someone holding a knitting needle. This can be in the middle of the night or sitting enjoying a nice cuppa.

Now I’m not writing this for sympathy, in fact keep it to yourself, it’s not helpful if I have to reassure you I’m ok. Tell me it sucks and you’re here for me but don’t look at me with pity in your eyes. My goal is to spread awareness, a lot of people I know have told me they’d never heard of endo before I was diagnosed with it, others have reached out as part of the endo-sisterhood (one of the crappiest clubs to be part of) which is comforting, sucks for them and I wouldn’t wish it on anyone but it’s nice not to be alone.

So by now, you know endo involves lots of pain, I’m in pain daily, sometimes it’s just a 1, 2 or 3 out of 10, others (like 5 days last week) I’ve ranged from a 4 to an 8. The worst I’ve felt was a 9, that’s happened twice, once pre-diagnosis and once a few months post-surgery. The latter saw me going to a&e (turns out I had a walnut sized cyst on my ovary). Endo is much more than just abdo pain though...

It’s cancelling plans with friends and family, sometimes last minute (sorry guys) because you can’t move.

It’s using your dog as a heat pad so you can finally fall asleep.

It’s not being able to think clearly because of brain fog (and pain).

It’s having to pause and sit on the stairs on the way to & from the bathroom because of sheer exhaustion (and pain).

It’s yelping when you stand up because your hips shoot pain down your legs and up your back.

It’s mentally draining.

It’s feeling nauseous a lot.

It’s drinking wine & eating ice-cream in a too hot bath.

It’s the fear of feeling like this forever.

It’s bowel movements so sore they bring tears to your eyes & make you feel faint.

It’s going into urinary retention and feeling your bladder spasm.

It’s hot flushes.

It’s depression.

It’s feeling like your hips are on fire & your tendons are going to snap.

It’s unbelievable fatigue.

It’s colds lasting much longer than they should.

It’s headaches that last days.

It’s losing focus mid-conversation.

It’s not being able to bend to tie your shoes on the way home.

It’s feeling like your ankles are broken.

It’s bleeding gums.

It’s ducking into the laundry room at work for a breather (and sometimes just to squat for a few minutes to relieve the stretched feeling).

It’s waking up feeling like your bones are lead.

It’s guilt at getting nothing done around the house.

It’s needing to sleep far too long.

It’s feeling permanently broken.

It’s being grumpy with those trying to help.

It’s feeling proud when you clean the house or take the dog an extra long walk.

I could go on but I think you get the picture. Also it’s not all doom and gloom. I’ve recently been started on regular painkillers (gabapentin) to try reduce the daily pain, therefore I won’t have to pop strong painkillers everyday. I do have a lot of good days, yes there’s pain, but it’s manageable, and often without other symptoms. I’m also waiting to hear from a specialist who my consultant referred me too. I’m hoping for excision surgery (snip snip).

Don’t get me wrong, I love my life. I have an amazing partner, 3 crazy but wonderful fur-babies, a loving family, brilliant friends and a job I love. I’ve been lucky enough to see a lot of the world and I plan on seeing a lot more of it. 

I am happy, I’m not sitting around moping and crying woe is me.

Living with Endometriosis - My Partner’s perspective:

To start with I had no idea what PCOS or Endometriosis was.  Even after Hemy explained it to me it was hard to relate to.  Hemy brilliantly picked up on it and was so patient until the moment it all came into sharp focus; when she showed me youtube videos of the (ablative) surgery she was going to have.  

The “Endo Community” are impressively organised but there's no room for squeamishness. People unashamedly share their experiences.   There are scars, infections, and a multitude of endo related problems that people talk openly about.  It is constant source of advice and breaks down the jargon. Endo never came up in sex education, and it really should have.  One in ten women suffer from it.  To put that in context, thats over five million in the UK, more than the population of Scotland.  For us it lets Hemy go to consultant meetings knowing more than the surgeon and gives me a wider insight into what she deals with every day.   

Day to day there is a lot of pain management.  On “endo days” even small things like going upstairs can be difficult.  Something you take for granted, like getting something from the bedroom, can be challenge.  So you try not to aggravate it.  You get the TENS machine, run a bath and end up with a cupboard full of every painkiller under the sun, or so it seems.  On those days you end up doing more about the house than normal, but that's life.  

The late night hospital trips are the most exhausting for both of us.   You download as much from Netflix to the iPad as possible, find the headphones (that are never where you left them), pack a bag and try to remember which book Hemy's reading at the time.  Then you jump in the taxi and settle to wait in Accident and Emergency, on a horrid plastic chair worse than the ones that gave you a numb butt in school assembly.  Then the doctor will arrive decide its “gynae” and send for someone else and you settle in for another wait.  Finally you leave the hospital having been given nothing more than “hospital-lag”.  No matter how tired I am though, it's no where near as exhausted as Hemy is.  

If I'm honest, I don't think I do much.  Just try and help out when I can.  We're in it together, but she's the one in the ring taking the punches, all I can do is try to be the best corner that I can.