How I fought the NHS…and won

Last week I had my laparoscopy and guess what? I have endometriosis!  A diagnosis I had five years ago, only to be told a year later that there was no chance it could have returned.

Three and a half years of unbelievable pain, pain that has affected every area of my life and made me a vastly different person from the girl I once was. But before I get too philosophical, let me tell the tale of my surgery.

I arrived at hospital early last Tuesday morning, apprehensive and in a fugue state thanks to the lack of caffeine in my blood stream.  The nurses did all their checks, sent my Mum off and got me changed into a fetching backless hospital gown and dressing gown combo.  Abandoned in a grey corridor, reading Harry Potter and the Half Blood Prince, I was eventually visited by a member of the surgical team.  As she went through yet another checklist with me, my consultant appeared.  He is the only endo specialist in my area (possibly country, since we’re so tiny) and highly praised by nearly everyone at support group.  My feelings toward him were decidedly mixed.  He was the first gynae to ever really listen, to acknowledge my pain diaries and tried his best to understand what my life is like.  But he also was adamant that I did not have endo.  The first time I saw him, he said it was bound to be endo.  Then, after receiving all my notes and scans from other hospitals, changed his mind.  He would not have operated if I hadn’t demanded it.  Back in January he left the decision up to me.

I made the right decision.  He warned me, sympathetically, that he might not find anything whe he looked inside.  He told me to prepare myself in case there was nothing there.  I must be the only person under his care to go into an operation hoping they find something.  After a frustrated anaesthatist finally found a vein (mine are notoriously difficult to find) we were off.  I woke up in recovery in that wonderful post-anasthetic bliss, barely able to move. I dozed on and off until my doctor arrived to speak to me.  He told me that they found endometriosis on the back wall of my vagina, uterus and all along my pelvic wall. He waited for my reaction.  I asked him to repeat what he had said. He confirmed that he had replaced my Mirena but there was too much endometriosis to remove then and I would have to come back for a bigger operation.  I’m on the ‘urgent’ list as he wants to get rid of it asap.  Before he left, he turned back and squeezed my shoulder, saying ‘You did very well. Well done.’

A nurse came over soon after he left to make sure I was okay and give me some tissues.  I was crying, not because I was upset but with relief.  It was over!  All my fighting was over.  They knew.  They knew that I am ill, that I do have this disease, that I wasn’t making it up, it wasn’t all in my head.  I had finally come to the end of three and a half years of pain limbo.

Of course, it is not great news that I have so much of the disease. The fact that my first lap five years ago removed a small amount on my left ovary yet now my pelvis is riddled with it is not exactly cause for celebration.  I have not given much thought to the implications this will have on my life.  The extensive amount is bad enough but where it is – that’s a whole other matter.  I have so many questions.  Will it hurt when I have sex? Has it affected my other organs? If I ever get pregnant, will I be able to carry a baby in a uterus so scarred?

I’m trying not to focus on these big scary issues.  As they say in How I Met Your Mother, those are things for Future Me to deal with. Right now, I just want to be glad that I finally (FINALLY!!) have a confirmed diagnosis and that they can now do something to help me. I no longer have to fight the system, the doctors, the specialists, the NHS in general.  Now all I have to do is fight this disease.

The on-going health saga

The past few weeks of my life can be summarised in three words; hospital, work, sleep.

After three painful weeks with a gynae abscess that refused to respond to antibiotics, I followed the doctor’s orders and went to A&E.  The whole experience was like a farce.  Five hours I waited in the first hospital before being moved to another across the city because the first one couldn’t find a room with a door in which to examine me. Lack of door! So I traipsed across to the other hospital and was eventually seen there and told to go home and come back the next morning to see a specialist.  The specialist, deciding surgery should only be a last resort because of how painful it would be to heal, gave me very strong medication to try to beat the thing out of my system.

I don’t remember much of the week that followed, other than the headaches and spending quite a lot of time in my bed. By the time I returned a week later, the abscess was gone. Turns out the cocktail of drugs and epic amounts of rest were exactly what my body needed.

Now, abscess-free, the pain of endo has returned just to remind me its still here. I spent most of this weekend drugged up on Tramadol, trying to prepare a presentation for class this week. And today, I’m sitting in work nursing a painkiller-hangover with a heat patch stuck to me and my microwavable duck on my lap.