My First Experience with an Endometriosis Specialist Centre
Yesterday was a strange day. A confusing mix of good and bad.
A few weeks ago I postponed my operation for several reasons -
Fri 11th - leave old job
Weekend - big wedding
Monday 14th - start new job
Weds 16th - operation
Sat 19th - EndoMarch
Sunday 20th - second part of big wedding
Mon 21st - EndoWhat Screening
You can see the complications there...
My new job needed me asap, and there were deadlines and reports looming at the very beginning, so I knew I'd feel pressure to get better in time to start and finish those, which wouldn't have helped my recovery. I could have pushed my start date back and they would have understood, but I knew that it would have implications for them as they were short staffed and for me, as I'd have so much to do when I did finally begin. I was starting sooner than one month's notice as my old workplace was kindly letting me leave after two weeks, but if I waited until after the operation, I may have not started for a month to six weeks. On top of that, I was a bridesmaid at the wedding and I also really wanted to be part of the EndoMarch and the EndoWhat film, so even if I had delayed my start date, I would have still needed to try and be at least able to stand for wedding. The whole thing felt rushed and stressful and wasn't helping my health trying to juggle it all.
Secondly, and I think I've mentioned this somewhere else, the hospital who was treating me is a good hospital, but not a specialist centre and I have always noticed their lack of patience with endo and almost air of nonchalance about it all. When I was taken to A+E in November to my new local hospital (I had moved), they wanted to keep me over night and were concerned that I might have an ovary fused to my pelvis - the hospital I was under however, didn't even explore this option and put me down as a routine lap. The hospital that I am now local to is an Endometriosis Specialist Centre, with consultants and nurses who specialise in severe endometriosis and can perform complicated surgeries that other hospitals cannot (or cannot do so well), so it makes sense that even their treatment by the gynaecologists in A+E, was better than the treatment I received in the consultant's room at my other hospital.
I had a chat with some women in the field and they suggested that perhaps I wait to see the specialist centre, as I did have an appointment with them, but unfortunately it was booked for April and they couldn't bring it forward. So that's what I did. I postponed my op with the other hospital, but I didn't cancel it, just in case it all went wrong (though I now think they have forgotten about me as it's been a month and I still do not have a new date).
Yesterday, I finally went to see my new consultant. As I walked through the grounds of what was once named the second worst hospital in the country, I had doubts. I was worried I'd done the wrong thing and that maybe I'd contract an infection whilst recovering from surgery - in the past they have been known for that kind of thing. I arrived slightly early - there were some frustrated looking women ahead of me, but I had already anticipated a wait. You don't go to a gynae department and expect to be seen on time. That kind of thing just doesn't happen and to be honest, I'm okay with that. I waited about half an hour before being given a clipboard with a six page questionnaire. At first I thought this was a a normal procedure for all patients, until I realised I was in an endo specialist centre and realised that this was all for me - all for us. Here I was filling out a form tailored to my symptoms. What was my bladder like? Do I have stomach problems? On a scale from 1 - 100, where do I rate my overall health? Do I suffer from depression? Anxiety? Back pain? Every question I could think to ask an endo patient was in there. I was almost excited by them - Yes! I do get pain in my legs! No! I can never fully empty my bladder! It took a while, but it was worth it.
During all this time - actually, it began whilst running for the train - my endo kicked in. Pretty hard. I wasn't due for another five days or so, but it seemed like my body wanted to put on a performance. So as I sat in the waiting room, my cramps began to grow and I recognised the signs that this wasn't just a bad day - this was about to be my full on hunched over unable to stand first day of my period. And it was all going to happen in front of my consultant.
Thank you body for pulling that one out of the bag.
So, I get called in and by this point I'm walking funny. I sit down to a concerned looking consultant and an even more concerned looking nurse. My consultant flicked through my questionnaire with an expression which was an unusual and conflicting mix of 'I've seen this all before' and disbelief. He was shaking his head as he said to me "You're in a lot of pain" I gulped. When a medical professional recognises your struggle it does something to your soul - you expect your partner or maybe your family to recognise your struggle, but the medics are used to this shit and have an armour of steel. Not this guy. "I just don't understand how people do not know what you're going through. The extent of your symptoms... There is not enough research and funding. I see young girls like you and I operate for five hours. Surgeons who come to observe are in disbelief. It spreads like cancer. Cancer kills but endometriosis maims lives for as long as it wants.' The nurse was making noises as he talked and shook her head in agreement and despair, she told me about a girl whose legs wouldn't stop moving because she was in so much pain. I realised that these two really saw me - saw us. They knew our story. I choked up for a moment, but managed to swallow it down.
"Have you seen a gastroenterologist?"
"No" It had never been suggested to me to do this, despite looking six months pregnant after each meal since I was about ten.
He proceeded to ask me what they found in my first operation - which was superficial endometriosis - and whether they've investigated further (they hadn't, I was told it probably wouldn't come back and was discharged). "What we do is as a team, look at your case. You may have some deep infiltrating endometriosis giving your symptoms, so I'd like to do an MRI. Then we meet with several consultants and discuss what we find and what type of surgery needs to be done. But this can take time once you've had the MRI and we've got everyone together, it could be two months... I don't think you can wait that long. Have you had Zoladex before?"
Ah, the famous Zoladex. The induced and temporary menopause. I know for some women this has been a huge help and form of relief, but I also know that other women suffer immensely with the side effects. Endometriosis doesn't have one known treatment that works for every woman, it's a bit of a gamble. Did I really want to take this gamble? I decided I didn't - it has taken me two years to realise that having pain everyday, stomach problems, depression, anxiety, a demanding bladder and feeling like I need to sleep for a year (I am really not exaggerating) was my new normal. I'm not prepared for a new normal - I honestly don't think I have the strength.
So I geared myself up, took a breath and tried to put my point across with as much strength and sorries as I could fit in - I cannot be assertive without being apologetic, it would seem. I wanted my consultant to like me and I knew getting the treatment you want is a battle. However, my big girl talk was not necessary - he understood, to my surprise, immediately.
The next option I was provided with was the pain killer, gabapentin. "It's going to make you very drowsy."
"Okay... Could I just take it when I'm in the worst of it?" I thought of my daily struggle waking up and staying awake - surely if I was any drowsier I'd be in a coma?
"Unfortunately not, you have to take it everyday for it to work" He shook his hands, crossing them in the air "Let's go with the laparoscopy first. You can't wait for the MRI. We'll be able to remove the superficial endometriosis, but if there is something more complicated... We'll have to get you in for another operation. I will make a note to do this myself, so I can do what I can during the lap. The MRI will show us if we need to do another procedure."
So there I was. Absorbing this news whilst he printed me out the paper work to sign. Five years ago I thought the endometriosis would never grow back, even over the past months, whilst in A+E, on crutches, going part-time, working from home, spending my weekends in bed, I didn't think it was that bad. I kind of feel like I'm one of the many cases who hasn't got a lot of it going on, but has a whole heap of symptoms. It was a strange thought to get my head around - I might be one of the cases that I read about, I might be like the women who I support in my voluntary work. I kind of wanted to say "Wow, doc. Maybe I'm wrong - maybe it's not severe pain when I can't walk, perhaps that's moderate. Surely severe is worse than this? Surely my little version of endo is not deep infiltrating endo? That's not me - that's those bad cases." But now I was having to adjust to the idea that I am one of the women who has been offered Zoladex, that I might not only be looking at one operation, but two, that the endo might not just be fusing my ovary to my pelvis, it might be inside my bladder and my bowel. I tried to decide what kind of news this was. Surely it was good - I was getting answers. But what if the answers were right? I wished I hadn't come alone.
As these thoughts and realisations ran through my mind, my hands pushed down on the seat, lifting my pelvis up slightly because I couldn't take the pressure of a hard surface. I hadn't seen the nurse watching me from the corner of the room. "I can see you're suffering. You are going though so much."
The consultant gave me a prescription for gabapentin, though I have no intention of taking it. I am pretty put off strong painkillers after spending months on morphine, laughing gas and tramadol as a 17 year old with a broken spine. We went through the lap paper work and the details of the MRI as I squeezed the desk in time to the waves of pain.
The consultant then asked me to stay in the waiting room to see the Specialist Nurse, he told me how helpful she would be in the lead up to my lap and I was once again struck but his genuine kindness and concern for my welfare. As I left he sent me his best wishes and told me to take care of myself. The chatty and all seeing nurse walked me back to my seat and told me how she understood what I was going through and that I was so brave. I thanked her and tentatively lowered myself back down on to my seat, overcome with gratitude.