When I started this blog, I decided that I didn’t want it to be a haven for my trauma and pain. My intention is to make people laugh where I can- I often see the finny side of difficult situations (it’s a blessing and a curse), while also straying true to the reality of my life with endometriosis. That said, this is yet another angry and ranty post, so apologies in advance, but I’ve decided this is an important experience to document. Having FINALLY received a copy of my notes and photographs from my laparoscopy in August, my GP called me in for a meeting to discuss the findings. Having read up on the topic extensively and attended the Endometriosis UK Information Day, my aim for the appointment was to gain a referral to an endometriosis specialist center in London. I’m convinced that my case needs to be reviewed by experts, and a long-term care plan put in place for me.
I think the appointment was the most unsatisfying encounter I’ve had with a healthcare professional in my entire life, and to be honest there have been many dismal instances so that’s really saying something. It started off fairly well, as she printed off and showed me the full results of my surgery which I have been desperate to see for months- I didn’t have a follow up appointment with my consultant after my surgery and have been pretty much left in the dark. However, things went downhill from there pretty quickly. I’m not exaggerating at all when I say it went like this…
Me: To be honest, the diagnosis has also been such a big shock for me, it is hard to take in.
GP: <Looking very puzzled> Um, why?
Me: Well just how bad the damage is, and that I have a chronic illness. It’s pretty upsetting. And it affects my life so much and holds me back, feeling so unwell and in pain all of the tine. And it makes me so worried about my future.
GP: <Rolling eyes> Riiiiight. To be honest you are making too much of a big deal out of this aren’t you? Endo is no big problem.
Me: <Stunned silence>. I’m not ‘making a big deal’ out of it at all. I’ve actually suffered for years hardly complaining at all. But look back through my medical notes, I’ve had constant hospital referrals for years for pain and fatigue.
GP: Well endo shouldn’t make you feel unwell.
Me: Well it does. It’s the chronic fatigue I think and the inflammation it causes.
GP: <Laughing> It doesn’t cause chronic fatigue. It should just cause pain when you’re on your period.
Me: But it doesn’t…I am in agony a lot of the time. Sometimes I can’t breath, and the endo on my diaphragm causes severe burning pain in my back, shoulder and neck. It really affects my work and my PhD- I’ve had to contemplating quitting. It’s been awful.
GP: OK, you just really need to calm down about this, you’ll be fine. It really isn’t a problem.
Me: Well actually, I’ve been doing some reading and speaking with other people who have endo, and I want to be referred to a specialist endometriosis centre in London for a second opinion and to work out a way forward to manage my pain.
GP: I really don’t think that is necessary. You’re just making too big a deal of this.
Me: I’m not. It is a recommendation in best practice guidelines that all diagnosed cases of endo are referred to one of these specialist centers. And it was recommended in the BMJ in March.
GP: The BMJ says a lot of things.
Me: I really think I need this referral.
GP: OK. I will try and get you a referral, but I can’t make any promises. I’m on annual leave from today though so I won’t be able to do it until after Christmas.
Wow. Just wow. I still can’t really believe this happened. Not to be a pessimist, but I am blatantly not getting that referral am I? And if she isn’t even going to pursue it until January then it just means months more of waiting around in pain. I’m so angry about how she completely marginalised my experience and basically kept telling me the problem is in my head. And the worst part is that she had the evidence and photographs right in front of her about how deep and widespread my endometriosis is! I was also really concerned that she lacked basic knowledge about the symptoms of endometriosis, and that she completely overlooked my psychological distress.
Does anyone have any advice on what I should do about this? Shall I wait it our and see if a referral turns up in January? How do you manage with your GP? Your thoughts are much appreciated as ever.