This sounds like a depressing title - I guess it is, but it's the truth. Endo comes with obligatory situations of inconvenience, embarrassment and humiliation. They come in various forms and levels, ranging from staining your own clothes/furniture/office, having inconvenient and badly timed stomach issues, falling asleep in places you really shouldn't because you literally can't keep your eyes open or locking yourself in the office toilets for an abnormal amount of time because you just can't stand up.
Today, I entered a new realm of endo-humiliation. I passed out in my pre-op appointment and not only did I pass out, I proceeded to wet myself whilst in my unaware state of unconsciousness.
The specialist centre have a questionable admissions unit and there was an error on the waiting list, so I should have had my lap a little while back but had no news. I got a call on Friday to say that my date is Tuesday 7th, a week and three days away. I couldn't push another op back, so I had to take it. This half of the year, there really isn't a good time to have an operation, so this was better than in the middle of the three weddings I have fast approaching. This does mean that I need to be recovered enough to make my sister's hen do (which I'm still organising) 11 days after. It also means that I need to try and create/edit/schedule enough content on my two websites to cover the two weeks that I'll be a bit out of action. I also need to suddenly try and find a seamstress and have my sister's bridesmaid dress fitted and tailored, as it'll now be too late to do that following the op. Plus I need to make sure I have finished what needs doing at work before I am off (we have two training dates coming up and three end of year reports, so lots to prep for!). On top of that I have a big professional appointment tomorrow that has a lot riding on it, a deadline for Friday on another project and some work relating to a new exciting EndoLife venture that ideally needs to be done before I go in for surgery.
That's just the things I need to do. I have three social 'appointments' at the weekend because I've been trying really hard to stop isolating myself and start seeing people again. I also want to start the diet I've been given by my nutritionist friend, which will help me recover and sort out the other issues going on in my body like excess hormones, bad bacteria and a weakened liver, but I don't know when I'll fit in the shopping and planning for that now. We had anticipated I'd have more notice so we could get started on it and prepare in advance. If I wasn't struggling so much with fatigue, I'd stay up late a few nights this week and sort things, but I'm battling so hard to stay awake as it is and when I'm really tired I cry all day and quite honestly feel a bit (or a lot) suicidal. Anyway, this is what happens with endo. You're at the mercy of the hospital appointments and your symptoms, and you have to try your best to still achieve the things you want to achieve, enjoy life and stay well. It's a serious juggle and it's bloody inconvenient. It means when you should be doing your best to relax and get well, your most likely running around and getting stressed. Such is life.
So my pre-op, which they forgot to tell me about on the phone, was the 1st, so I had to squeeze that into my diary as well. As I walked in to the hospital, I was trying to find a seamstress to sort this dress out, whilst texting my sister about it all. Minutes before this, I was on the train and writing up a proposal for the EndoLife project I mentioned I'm working on, before that, I was running out of the door whilst on the phone to an old colleague, asking their advice on the big professional meeting I had the next day (which I only found out about hours before). That morning I spent 3 hours trying to finalise things for my sister's hen and then rushed through editing posts for SoulGraze and scheduling their release dates. I walked into the hospital feeling no more stressed than I usually feel, but still acutely aware of all the things I needed to do still.
I got upstairs, made myself known and took a seat in a seriously dingy waiting room with stained floors and a crackling TV showing an overly made-up male judge putting down some innocent civilian. I tried to block out the noise with relaxing music as I read through material for my meeting the next day and about 10 minutes later I was called up, which was pleasantly surprising given the usual waiting times. The first nurse I saw asked me to remove my top and strip down to my bra for an ECG - I'm used to getting naked for endometriosis but admittedly I was a bit puzzled by this. Once I was lying down on the bed, she looked at me and realised I wasn't over 40, had read my birth date wrong and announced I only need my blood pressure taken and told me to get dressed again. This was mildly embarrassing, but only a little. At least I didn't have to take my knickers off.
I went back to the waiting room and continued frantically reading, whilst trying to block out a new show - this time an orange man was judging the value of old things found in old houses. The next nurse made me take swabs to check for MSRA, which was pretty awkward, seeing as he was probably my age or younger and was clearly uncomfortable with watching me circle a cotton bud inside my nose. He then asked me to swab my groin and I soon wished to be swabbing my nose again. I was given an antibacterial body wash to start using a few days before I go in. The nurse was kind but clearly tired, and I was left feeling not too sure when exactly I should start using the wash and quite frankly, neither was he. I was weighed and measured and ushered back into the waiting room, where I return to hunching over my phone.
The next nurse took me through how to prepare for the operation. By that point I'd been at the hospital for about an hour and a half (which isn't really long at all), and I was desperately needing the toilet because my bladder can't handle endo and I'm forever taking loo breaks. I didn't go because I didn't want my name to be called and for me to missed off the list. Anyway, we went through the usual - the powdered stuff I have to take a day before the op to empty my bowels, what's my family's health history, etc. I told her that my consultant asked me to have a blood test when I came in last, so I didn't have to do it today, so she preceded to check my files. Apparently my cancer results were all clear. That's great - though I had no idea I was supposed to be tested for cancer. I'm almost certain I had three vials of blood taken and no one said anything to me about cancer. I wasn't really alarmed by this and was fairly sure they'd just given me the wrong results somehow. So of course, I needed to have my blood taken again.
Yay for me.
I'm not good with needles (unless the end result is a tattoo) and I'm definitely not okay with having my blood taken, but I'll do it and I don't put up a fuss - I warn them I'm a bit queasy about this stuff and look the other way. But I have to admit, I am getting a bit tired of it. Every time I go to hospital they take my blood and usually I have time to brace myself for it, but I had no time for that on this occasion.
So there I was sitting straight up in a normal chair, with no reclining option like I was used to when I get my blood taken. The room was small and hot and they were drilling next door, with no windows looking out to distract me. I also really needed a wee. I could tell I wasn't prepared for this and felt a bit unnerved, I didn't like that my arm was upright on a desk, at an almost right angle. Something about it reminded me of having a drip in my arm when I was in hospital for weeks with spinal injuries. It didn't feel like a good position for a blood test, but I figured I was being paranoid. The strap went around my arm and I clenched my fist, which always grosses me out a bit. The nurse briefly told me the needle was going in, when I felt a lot more pain than I'm used to. She made a noise that sounded like something not so good had happened "I'm sorry - the needle was too big for your vein, and your vein collapsed. That's why the needle popped out."
"I'm going to use another needle, a smaller one."
I wanted to ask her to put it in the other arm because my arm was sore, but I felt like I was being fussy. I turned to see her unwrapping another needle whilst she asked me if I was alright, she talked about how no one ever gets used to needles and I tried to agree "I had a drip of morphine in my arm for 6 weeks and I didn't get used to it" On reflection, talking about this probably wasn't wise.
"Oh gosh, why did you have that?"
"I broke my spine and a few things in that area in a car accident."
"Was it a button drip or constant?"
"Urm I'm not sure actually, it was so long ago...Maybe in the beginning it was constant... and then a button drip...." I could feel myself going from the moment the last needle came out, but didn't really believe anything would happen. I thought I could regain composure, but I was finding it hard to talk and the questions about my car accident weren't helping. I started seeing slight spots. "I'm feeling a bit funny" I could barely get the words out.
"Okay." I'm not sure if she was trying to get the blood test done or was trying to take it out, but whatever she was doing didn't feel quick enough and I started to panic as the spots got bigger. "No seriously, I'm feeling really ill."
In my defence, I warned her - my last words were "I'm going to faint" and then, there was black. The next thing I knew is that I was in a car and the car had crashed, and I had wet myself. At the same time I was in a hospital bed and morphine was hooked up to my arm. I was also on a metal table with a nappy on whilst they tried to put a catheter in me and looked at my injuries and I knew I was in a lot of pain and scared but I couldn't feel it.
Then I opened my eyes and saw a lot of water flowing pretty fast from between my legs and I came round to the nurse asking me if I was okay and I realised, feeling mortified, that I had just passed out and wet myself in front of her, in her office, on a standard office chair. I felt really unwell, unbearably hot, weak and like I might pass out again. The shock of my flashback hit me and I felt emotional, tearful and completely confused at what had just happened. The only other time I have passed out is after my car accident, when I tried to walk for the first time and the only other time I have wet myself in my adult life is during the car accident, when I got knocked unconscious during collision. The closeness of this scared me.
She called for a wheelchair and then two nurses ran in and they couldn't find a wheelchair and everyone was looking very concerned, and very close up to my face, running around with paper sheets and plastic covers, they lifted me onto an office chair and ran with me across the ward. One nurse was panicking and was pushing me all over the place, the chair was spinning and I was ricocheting off objects, walls and desks, whilst the other nurse was repeating to her 'Calm, be calm, calmly' I guess she was worried that the other nurse's reaction was going to freak me out. My original nurse was ahead of them preparing me a bed and I actually have no memory of getting on to the bed at all, but I know there were four people in there and then there was me and my nurse and she was continuously monitoring my blood pressure. I couldn't stop apologising and tears were falling down my face against my will, but I felt embarrassed.
The nurse said I could come back for my blood test in the week before the op, but of course I had no time, so we decided to leave me for a few minutes to rest before seeing if I could handle it again. She kept popping in to check my blood pressure and in the mean time other nurses came in to see how I was doing. I tried to put on a brave face to my earlier male nurse, who tried to be nice and light-hearted, but I was embarrassed because I wasn't sure if he could see that I'd wet myself and I just wished he'd leave. Another nurse came in and said she loved my hair, she was chatty, bubbly and had a thick accent which took me a while to get to grips with, so at first I found speaking to her a bit overwhelming as I tried to come to terms with having a flashback and wetting myself all in one go. She did however get me a sugary tea and biscuits (which breaks all of my pre-op diet rules) but I knew I was in need of food to get me feeling normal again. Whilst she was out preparing that, I called my boyfriend and started quietly crying whilst I explained what happened. The two walked back in and were confused by my crying, which was again humiliating because I couldn't stop it and they had no idea what was wrong. To them, I just passed out. To me, I passed out, wet myself, had a flashback, felt like shit, needed to get home to prep for my meeting and generally felt exhausted from this entire endo episode of the past two years. I didn't have the energy to explain it, so I graciously accepted the tea and biscuits and thanked them again.
Finally, my nurse returned and we tried a third attempt to take my blood whilst lying down. This time, with sugar in my system, a fan on my face and no risk of falling off a chair, I was able to maintain my composure. My nurse patted me and gave me a well done, which quite honestly I needed to hear, and then left me to recover until my boyfriend came to collect me. He was traveling from our flat, which is quite a distance away and I spent the next hour feeling too embarrassed to leave the room and sit in the waiting area, but also felt awkward and an inconvenience as nurse by nurse walked by and commented "You're still here?".
There's not a whole positive moral behind this story, except to demonstrate to people who don't have endo, the kind of strange complications, hurdles and experiences an endo sufferer goes through. How it is not endo and your life - they are not separate, your life affects your endo and your endo affects your life. And sometimes you wait to be seen by three nurses and really need a wee, and sometimes they say things that remind you of another distressing time in your life, so you pass out and wet yourself. These things have an impact on everything in your universe. I was unable to prep for my meeting because I lost my evening to a hospital bed and so only had three hours in the morning, still feeling shaky and vulnerable.
I think I reacted so badly because subconsciously I walked in incredibly stressed, with a million things running through my mind. If the surgery hadn't been so last minute, if I hadn't had needed to rush through everything beforehand, if I had known I was having a blood test, if we hadn't talked about the accident, etc etc, I probably would have been fine, like I always am. But I am glad I was able to see my vulnerability in that moment, that my body reminded me I have a lot going on and perhaps I needed to take a step back or needed some extra support.
The humiliation? Endometriosis is not the most dignifying thing to go through or experience, but it's best that you get over it, if you can, when you can. I could still be cringing at myself now, thinking about the fact that I wet myself in front of these people, but they treated me kindly and with respect - and after all, they're nurses, they probably see this stuff all the time. This is the best way I have learnt to deal with the embarrassment that often accompanies the disease.
Having said that, if you can ensure you take loo breaks, that probably helps.