After the operation: my experience with endometriosis Part Two

This is Part Two of my endometriosis adventure – you can read Part One here.

When I woke up, I was shaking, quite violently. I was propped up in a hospital bed. The lighting was quite harsh. I could feel a small cushion between my thighs. I turned to the nurse who was attending to my canular and said, quite calmly, “I’m not cold.” It wasn’t actually anything to do with temperature, anesthetic shakes are quite common.

I drifted in and out of consciousness for what seemed like quite awhile in that bed. Other patients in other beds came and went and I watched the nurses chatting at their desks. When I started to shift and get uncomfortable, a nurse was at my side immediately to top up my medication. I tried to look under my gown and see what was going on, but I was still hooked up to a lot of devices. I could see blood stains on the gown, near my tummy. I worked out that I had a pad between my legs. I was thirsty and my throat was very sore. I wasn’t quite sure, I was bleary eyed and sleepy and nothing made sense quite yet.

The surgeon came to talk to me, which I personally think was the wrong time, but they’re obviously so busy and working to a tight schedule. She told me then that they had found patches of endo and had excised (cut out) four different areas. She described them using their medical terms and my fuzzy head couldn’t comprehend in the slightest what she was saying. I wanted a cup of tea and a cuddle from Lawrence and this lady was getting in my way. I wish I had the sense to ask more questions, but my head just wasn’t in the right place at this time.

I was wheeled back to the day case unit and there he was. He smiled and I can’t describe how much better it made me feel. I had got through the surgery and Lawrence was there waiting with water and biscuits. Food! Drink! I guzzled the water, I couldn’t get enough, but the food took a little longer to become accustomed to. I nibbled a cracker and it made me nauseous. I tried a biscuit and that was better. I finished a biscuit, then another and I was on my second jug of water. I felt weak and shaky still, but I gained a little strength with each tiny bite. I was offered codiene, but I had plenty of experience of that before, so I declined.

The nurse came in to explain that I could only go home once I had independently gone to the toilet. I was eager to get home and get in pyjamas, so I tried to stand up and immediately walk myself to the bathroom. Big mistake. I didn’t even walk three steps to the foot of the bed before I felt sick, dizzy and weak all in one second. I thought I was going to slump on the floor, but I reached out and fell onto Lawrence and it took him and the nurse to get me back into bed. The pain was shocking and the nausea was worse. My head was spinning. The nurse offered me codiene once more and I gratefully accepted.

I rested. I waited. This was the first time I learnt that patience was going to be an important part of my recovery. It would take me a few more attempts to learn this lesson. I tried again, this time taking it slow, resting after I swung my legs to the edge of the bed, taking each step at a time. I had Lawrence holding my hands in front, the nurse was close behind me. We made it to the bathroom, I did the deed and I was allowed to get dressed and go home. Before heading out, I received my discharge summary and more informational leaflets. I quizzed the nurse about the summary, about where they had taken the endo from. She didn’t know. “I trained as a midwife, I’m afraid.” Again, lack of communication, I had to go and research my own answers. We could see from the summary that the surgeon had noted my “ovaries and tubes all fine.” That sentence meant very little to me at the time, it wasn’t until my consultant appointment that I understood the gravity of it, but that’s further along in the story.

The first night was difficult. I was exhausted and grumpy and couldn’t coherently explain to Lawrence what I needed him to do to help. I cried, I snapped at him and then felt awful about it. All the water was finally catching up with my system and I had to get up to go to the toilet three times in the night. Every time, I clutched my stomach and stumbled the few steps to the bathroom. It hurt to get out of bed, to lower myself on the toilet, to actually pee, to get up again and to get back into bed. I was dosed up, but that didn’t mean I wasn’t hurting.

My belly was swollen for a long time after the op, over the two weeks recovery period I had. I did bleed, but not as much and for not as long as I first feared. I took my plasters off in the shower two days after my operation, as instructed. That was a bitch, there is no other way to describe it. Those suckers were stuck on fast and the skin around them was still so sensitive and sore. I really had to psyche myself up to get the last one, the one right on my pubic bone, off. It took multiple attempts, it was no joke. Just to say, I’ve been really lucky that I’ve had no issues with my scars. I have three and they have all healed correctly with no infection or anything like that. I still notice them everyday, but I’m trying to take ownership.

And now I had two weeks off to rest. I watched films and TV shows and documentaries. I turned to cross stitch and other craft to help me feel a sense of being productive. I didn’t want to feel like I had wasted my day, so having a little piece of stitching to show at the end of the day helped. I also made sure I got dressed every day. This really helped my mindset, even if I was just having a wash and getting into a different pair of joggers and a clean t-shirt. Routine helped me to rest. My appetite returned slowly, I really craved plain food. My staple meal for a good few days was a baked sweet potato and half a tin of baked beans. I wanted simple comfort food, not rich, not spicy, but hearty and healthy. I liked preparing the food too, it made me feel more like me.

Before I knew it, it was Christmas. I got to enjoy the festivities like I normally would, just with a little less food as my stomach wouldn’t handle it. I had wine, I had chocolates, I got to open presents and spend time with loved ones just like everyone else. At the time, I felt like I was leaving endo in 2017, I was ready to start 2018 with a fresh start. I started making plans. My body had coped with so much battling this illness, and I wanted to see what else it was capable of – I wanted to get fit. I bought a journal and started penciling in all the workouts I was going to do and all the goals I wanted to achieve. January 1st, just like everyone else, I was going to start my fitness journey.

It didn’t go like I planned. My energy levels took a long time to recover, a lot longer than the two weeks, longer than I could handle. I got increasingly frustrated that my body couldn’t cope with what my mind wanted to achieve. I tried a low impact workout video and ended up wiping myself out for the next two days, and causing bleeding down below. I had also lost a lot of strength from not doing any exercise for months and not even being active for a large amount of time. The simple fact of the matter was that my body wasn’t ready.

When I went to see the consultant in January, four weeks after the surgery, she explained that it could be months before my body is fully recovered and my energy levels return to full capacity. She explained I should wait at least six weeks after surgery before attempting any body weight exercises, or any other exercise, if you know what I mean.

I have to say, although I had my niggles with the hospital, I really appreciated the continuity. I first met the consultant when I went into the gynae ward in the ambulance, then again for the consultant appointment, she was my surgeon who did the operation and she met me for the post op appointment. If I wanted another meeting in the future, I would be able to meet with her. And you really can’t put a price of someone so knowledgeable knowing the ins and outs of your story and being able to advise accordingly. She knows that I’m a person who wants to know all of the facts. She offered to show me the pictures that the internal camera took during the procedure and I agreed, I was curious. I was expecting the area of endo to be like a patch, probably red, a bit like period blood in the wrong place. But it didn’t look like that, it was like a creamy brown scar, barely noticeable until it was pointed out to me. I couldn’t quite believe that those little lines were causing me so much pain.

She also finally went through the entire discharge summary and fully explained where the endo was and where they’ve taken it from. A piece was sent to a lab and confirmed – it’s definitely endo. My consultant was very clear when she said that I have endometriosis, not had, it could come back at any time, and there’s always a chance it could come back worse than before. But there was good news too. Because endo wasn’t found on my ovaries or tubes, I could have a baby naturally if I wanted to in the future. We had spent a long time before the operation having conversations about babies and fertility and what if we can’t so it was a relief to know it was still a possibility for us if we wanted to make it happen.

“And when is your first period due?” The consultant asked.

“Next week, in a few days actually.” I replied.

The consultant was relieved she had the opportunity before hand to inform me that this period was going to be tough. She told me to brace myself. This wasn’t because the operation has been unsuccessful, which is what many people fear, but it was part of the healing process. It was almost a situation of getting worse before it got better.

She was right, that first period was brutal. The bleeding was heavy, the cramps were everywhere, and I still had to get up and go to work like a normal person, because I had finished my allotted recovery time. I was meant to be better.

“But this is just period pain right?” Lawrence asked. “It’s not endo pain is it?”

I know he was seeking reassurance, wanting me to be better too, but it wasn’t that simple any more. They are one and the same, I don’t get one without the other. There are levels, there are bad days and good days, but I think the days where I just got a bit of stomach ache at the start of my period are gone. It would be easy to let that fact get me down, but instead I acknowledge it, accept it and try to deal with it as best I can.

Things are better now.

Although I know endo can come back, and it is likely to, at the moment, I consider the operation to be a success. I don’t have daily pain, in fact, I barely experience endo pain any more. When I do, it’s normally because I’m stressed or haven’t been eating right or another external factor. It can be subsided with rest, a couple of paracetamol and maybe a hot water bottle. I have a greater range of motion now, I can stretch up and bend down to get things out of the kitchen cupboards with ease. My stamina and strength is slowly increasing. I haven’t committed to a lot of exercise yet, but I am now walking to my new workplace, which is a 5-mile round trip. At first, it was exhausting me, but it doesn’t hit me so hard now.

As for energy, that is the issue that has plagued me the most throughout this entire ordeal. Now, I try and manage it through food and supplements. I genuinely believe my daily multi vitamin and evening primrose tablets contribute to maintaining my energy levels. I also eat regularly to keep my blood sugars stable, and I really focus on eating the right foods. I believe that what I eat directly effects how my body reacts and how my endo symptoms occur. I’m looking forward to exploring this in all of my blog posts in the future.

I have endometriosis. I didn’t ask for it, I don’t want it, but I have it now and I have to deal with it as best I can. That means continuing to treat my body with respect and feed it right and allow it to rest and to help it to move to get stronger. I think that’s my buzzword for 2018 – strength. Getting through something like this has given me a huge boost to my mental strength, I can cope with a lot more than I ever thought I could. Now I want my physical strength to match, even if I have to be more patient with it to catch up.


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