Before the operation: My experience with endometriosis Part One

*This is a long post detailing my experience of endometriosis – you might need a cup of tea before reading!*

I can’t identify an exact day or an exact moment where I can say, there, that is it, that’s when my endometriosis started. It started to become more of an issue in June 2017, but before that, I had pains, I had heavy periods, I had an increasing issue with intimacy. I even went to the doctor as far back as December 2016, after having contacted NHS 111 with horrendous abdominal pain and being told to get an emergency visit. The doctor said it could be a burst cyst or nearly harmless kidney stones. I was told to go home and find out. Nothing happened in the next 24hr and the pain subsided and I got on a plane and went travelling.

So back to June this year. I have always had bad cramps, normally on the first day when my period arrives. Then it started hurting the day before I came on. Then the day before that. And then it started lasting longer, sometimes as long as the entire week-long period. When I next went to see the practice nurse to get more contraceptive pills, I raised it as an issue with her. She was very kind and didn’t dismiss it as just simple period pain. She suggested swabs and tests and a follow up appointment with a doctor in a fortnight. To be honest, at this point, I was a little shaken that it could be something. It wasn’t normal, it wasn’t just all in my head, there was something going on in my body that needed investigating. I was worried, but at this point, I had no idea how long this was going to go on for.

It was a Thursday night and it had been a painful day. I had taken two doses of paracetamol throughout the day, and it had barely made a difference. It was agony to walk, I had to place my hands on the walls of my flat to support myself to get to the bathroom. “This isn’t right,” I said to my boyfriend. “I’m going to call 111, can you pack a bag?” I didn’t know what to expect, but I did want to be prepared if I was going to have to go into hospital. It seems funny now, but I didn’t go to hospital the night 111 sent round a paramedic to complete observations and tests, but when I did go into hospital the next day after an urgent GP appointment, we didn’t take the bag!

My GP took one look at me, staggering into her office, lowering myself into the chair, and agreed straight away that something wasn’t right. She examined my pelvis and my stomach and organised an ambulance to collect me and take me to the hospital. The journey was horrendous, I have never known such pain. I felt every single bump on the road. I refused all offers of medication when I first got on, but as the tears ran down my face as the ambulance drove on, the paramedic hooked me up with gas and air and morphine. I was able to walk into the gynae unit and into the examination room.

Doctors are great and nurses are wonderful, but if I had one criticism, it would be lack of communication. I was scared and I needed to know what was going on and what was going to happen. There was phrases flung about so carelessly, like “operation”, “urgent surgery”, “possible rupture”. And then I was told my boyfriend had to leave, because it wasn’t official visiting hours.

Eventually, I was wheeled down to have an internal and external scan that revealed absolutely nothing. At the time, I was devastated that there seemed to be nothing physically wrong. Now I can see that it was good news that I didn’t have a ruptured ovary or a burst cyst, but at the time, being told there was nothing wrong with the scan was so horrible. I wondered if the nurses thought I was making it up or it was all in my head. I came back to my ward bed, cried and rang my mum. She made it quite clear to the nurse on duty that she didn’t care what time it was, she wasn’t going to leave my bedside.

I’m so grateful to the consultant that visited me that afternoon. She came behind my screen, introduced herself and noticed the array of gluten free snacks Lawrence had bought for me to enjoy, now that I was told I could eat again. She asked about how long I had been gluten free, why I chose to eat that way and what symptoms I had experienced. I told her my eating history and she said “That’s interesting. I’d like to talk to you about endometriosis.”

It was a lot to take in and after a traumatic day with barely any food, I’m not sure much of it actually registered with me. But I got the basics and I got a pack of information to take home. I was to keep a diary for the next three months and report back. I was swiftly discharged, drugs in hand, and sent on my way.

Again, there was a distinct lack of communication. I couldn’t read my own discharge summary about my own health. I didn’t know what the numbers meant regarding the medication I was supposed to be taking. Lawrence and I were both baffled, and we’re young, not cognitively impaired, and educated too. Thank goodness I work with District Nurses. I reached out and asked for help and I’m so glad I did because my team leader sat down with me and wrote out a coherent plan that I could easily follow.

This was my first experience of routinely taking medication and it wasn’t easy. The list of side effects is long, from constipation to drowsiness – I was tired all the time. I struggled to concentrate and for a time, I even went off my food, which you can imagine, is normally unheard of. But as the three months went on, I learnt a lot about my body and its triggers. I got used to the pattern of pain, anticipating when an endo flare up might strike. For me, it became known as a “flare up weekend”. I would start taking meds on Thursday, push myself through Friday, stay in bed or on the sofa on Saturday and probably for most of Sunday too. My body was forcing me to rest, even if at times, I didn’t want to.

Looking back over my diary, the factor I found the most difficult to deal with was the frustration. I couldn’t live my life the way I did before that hospital visit and it annoyed me. I couldn’t eat certain things in certain amounts without triggering pain. I couldn’t be with my boyfriend the way I wanted to be. I was being held back when all I wanted to do was to move forward. It was actually Lawrence that really helped me with this. He told me I needed to be kind to myself, to take care of myself and accept the fact I needed help. He was amazing through the rest of it too, squeezing my hand when the pain was bad and always having a supporting arm around me. He would bring me tea and get into bed with me during the weekends so I wouldn’t feel isolated. He knew he couldn’t keep me out of the kitchen, so got a stool so I could sit by the oven and still feel involved. I’ve cried so much during this whole process, and he’s always been there to wipe them away. I genuinely don’t think I could’ve got through this without him.

With regards to the diary, if I could give one “tip” to women in a similar situation, it would to be consistent with your records. Having all of the information at hand when I went back for my consultant appointment was incredibly useful. I had even written a summary on four main areas of concern – pain levels, mood, bowels and food. The consultant could follow along, see my highs and lows and pick out the patterns. I could see it too, because I felt it. The pain was never quite going away. It started as being a week long thing, then it got longer and longer, until the point that the days I felt no pain at all were few and far between.

I had a very open and honest conversation with the consultant during that appointment. She gave me all of the options and facts and explained them to me in a way I could actually understand. It all came down to two options; continue as you are and do nothing, or have a laparoscopic operation to see what’s going on in there. As you know, I chose surgery. And when I was scared or unsure, I reminded myself of that. I chose to do this, I chose to undertake the surgery. It made me feel empowered to know I had made the decision about my health.

Then it was a waiting game. After weeks of hovering by the phone, cancelling plans and worrying every night, I contacted the admin office only to be told I wasn’t on “official” lists and I might have to wait until next year. This setback nearly broke me. I was all for waiting my turn, I know it takes some women years to even be diagnosed, but I was told me surgery would take place within a certain time frame and that turned out not to be true. I got pushy, and I got a date for pre op. One of my colleagues told me this would mean my surgery would be soon, otherwise I would have to do the pre op process all over again. I had hope, and I clung to it.

I attended the pre op appointment on my own. I got less afraid of hospitals the more I attended, I suppose because the fear of the unknown element had been removed. At first, I was allocated a male nurse, which I personally wasn’t comfortable with. That’s another tip, it’s your health, it’s your body, you get to call the shots. And it’s not hard, I just requested a female nurse and that’s what I got. It’s not impolite, it’s your choice. And for me, it was a good choice. The pre op nurse was a similar age to me and she explained what I really wanted to know, like what would happen immediately afterwards, if it was ok to drink over Christmas (yes!) and how soon I could be watching Netflix in my own bed.

By the time I was going to pre op, I had received my letter with my date. 18th December, one week before Christmas. I went into serious planning mode. I planned what I was going to wear going in and coming out of hospital. I stocked my cupboards with soft food, things like sweet potatoes, baked beans, gluten free bread and plain biscuits. I bought jumbo sanitary towels because I had read about other women experiencing a lot of bleeding after the procedure. It kept me calm feeling like I was as prepared as I could be. That didn’t mean I didn’t have wobbles. I was so fearful about having to have a catheter or a stoma fitted. I was scared about what they might uncover when the camera went in. Maybe it wasn’t endo, maybe it was something worse and maybe, I wouldn’t wake up.

My colleague put that one to rest straight away. She had worked on an acute ward with severely unwell people for over twenty years and had only seen one person die on the operating table, and he was a very ill person. It was Lawrence to the rescue about my other concerns. He highlighted how unlikely it was that I would have to have a catheter, or a stoma and said even in the worst case scenario, something nasty was lurking inside, we would fight it together and battle on. Like I said, he’s the best.

On the morning of the surgery, I had to rush round to the GP surgery to get a copy of my prescriptions. I should have done this earlier, it slipped past my meticulous plans. But it turned out to be a good thing. That brisk walk in mid-December really cleared my head and put me in the right mindset for the day ahead. Lawrence’s mum drove us to the surgery and dropped us off. Lawrence took me to the ward, I was allocated a bed, and my surgeon arrived soon after. She wanted to know when I last ate – nothing since last night. Because the gynae ward was full, they had cancelled all longer operations. I was on day case, I was in the right bed and my allocated slot was moved forwards. I was definitely having the surgery.

I sent Lawrence away. This was part of our plan as we had previously discussed. He went for a day out with his mum, distracted and busy. It helped me too, I think I would have been more jumpy if he was there. I got changed into my gown and settled down to cross stitching and a puzzle book. Lack of food and water was tough, but I knew it wasn’t going to be forever, I had biscuits and crackers in my bag ready for the other side. It was probably around a four hour wait before my bed was taken away by porters and I was collected by the nurse. We walked down to the operating theatre.

I think it’s a good call that you are taken into an anesthetic room and not the actual operating theatre, where all the scary equipment is. I got into my ward bed and was attended by three female nurses who hooked me up. I only flinched when one needed to put the canular in, I still haven’t got used to that. I started talking to another nurse in the other direction and tried not to think about it. I surprised myself about how calm I was. I don’t mean to pat myself on the back, but I do normally have a habit of bursting into tears in difficult situations. But a nurse and friend told me that if I went under anesthetic calmly, I would wake up in the same state. I found that to be true. The nurses were brilliant. As she put the medication in through the canula, she said I might feel a bit funny. “Like you’ve had a couple of Christmas sherrys!”

“I’m not the biggest fan of sherry, I’ll be having a glass of red wine with my Christmas dinner.” I said underneath my oxygen mask.

“And what do you have for your dinner?”

“Well, turkey and . . .” And that was it. I was out.

*Stay tuned for Part Two later this week*