How I fought the NHS…and won

Published July 23, 2012 by crazyinpink

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.

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7 comments on “How I fought the NHS…and won

  • So great (and also not-so-great) to hear the news. Unbelievable. Mostly I’m sorry that nobody listened to you and it has taken such a godawfully long time to get looked into, it sounded like torture, but at least now you can hopefully work towards dealing with the issues and even better, not be in pain any more.

    • Thank you. Its hard to know how to react. As one of my friends said, ‘I kind of want to say congratulations but I think that might not be the right thing…’
      I’m already looking forward to having a life! I bought two new pairs of jeans, haven’t bought any since 2009 and the only ones I ever wear are my ‘fat jeans’.
      Thanks for your comment. Hope you’re well! 🙂

  • Good for you, I too have had so many problems with the nhs and still trying to figure out what is wrong with me.

    Best wishes to you.

    • It is really unbelievable how many people have similar tales of woe. And all you can really do is keep fighting, even though it feels like a never-ending battle.
      Good luck! Be as annoying as possible, it’s the only way to get anything done!

  • CrazyinPink – Can I highlight this story on blog? I am CONSTANTLY getting e-mails from woman who let their doctors bully them OUT of laps who then end up getting them YEARS later (YEARS SPENT SUFFERING IN PAIN). And they are found to be riddled with endometriosis. It’s a shame. Always trust your gut. I’m so glad you did! Bravo for listening to your self and that pain journal, for getting the advice and support of others and not backing down! Go girl!!! Thank you for writing it down in this blog, too! Other women NEED to see that! Would you let me discuss this and link to it in a post on on my blog Endometriosis: The Silent Life Sentence?

    • Thanks for visiting and commenting.
      I know that I have been a downright nuisance to my consultant and the various other doctors I see but I just couldn’t live like this without at least knowing why. It makes me angry to think that I spent ten days in hospital last year and they refused to acknowledge that there was anything wrong with me, discharging me convinced it was psychological pain. If they had only done a lap then, I could have had a diagnosis a year and a half sooner.
      Of course you can use my story, I think it is so important to raise awareness of this awful disease which affects so many yet isn’t widely known. It’s up to people like us to get it out there. That’s partly why I started this blog, so that other girls and women know they are not alone.
      Thank you so much for your support, I really appreciate it. 🙂

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