Nobody’s problem…

Visiting a Dr with any chronic and ivisible illness is a chore. I am certain any sufferer will agree. It requires great emotional preparation, homework and maybe a shot of something stronger than orange juice (although I don’t drink, so I’m already on the back foot).

Today has been another good one…well, up until about 30 minutes ago when the cramps started up. Nevertheless, I’ve had a good day at work, I’ve bought tea and as of yet, the cramps aren’t strong enough to prevent me cooking tea (but we’ll say that super quietly – the second I feel optimistic Endo tends to up her game another notch).

So with this in mind and an evening collapsed in front of the TV eating one of my favourite dinners planned (sausage casserole), I decided to publish one of the cathartic posts I wrote last week relating to one of many Dr’s visits I’ve experienced that I left feeling less informed, more stressed and infinitely less reassured than when I went in.

I just want to take this moment to thank readers for the comments and support I’ve received. This blog was started partly as a release for me, but largely in the hope of providing comfort to fellow sufferers of a Chronic Illness that they are not alone. To see I’ve made even only one or two people smile, provided a small amount of entertainment, makes me so happy and feel so much more confident that this was a good choice (and that maybe I’m not so boring after all)!

As always, enjoy!

Earlier this year, after much research and preparation, I steeled myself to visit the GP.

After my last “specialist” visit (see The Dr giveth and the Dr taketh away…) I had spent a long time researching options, considering Lupron injections and how I wanted to move through the N-Pass I had arrived at.

I had since visited a GP for a report to be compiled for my workplace confirming, yes, she does have Endometriosis. And it totally sucks to be her. This GP was amazing, spent a long time talking me through options and the consultation was eventually concluded with an agreement Lupron would be available on my file but as I would be unable to have HRT (due to a history of migraines with aura), and at this point everything was at a manageable level, we would carry on as I am. Unfortunately I am restricted on contraception I can take and pain management, so with her great sympathy I left the surgery feeling a bit better that someone had listened to me but armed with nothing more than my workplace report.

Now to earlier this year. I had changed surgeries as although the aforementioned GP was outstanding, the other Dr’s had frequently kicked me out of their offices (not literally, I’m not that bad) in tears and appointments with the good GP were like gold dust. The surgery was far from my home and work so it seemed practical to join the surgery in the Health Centre I live opposite to.

I had rang the surgery and spoke to a bitchy receptionist (I’m allowed to say that, I was one of them for two years) who seemed to take great offence when I asked if any of their GP’s were Gynae or Sexual Health specialists “I don’t know. There is a sexual health clinic upstairs. Go there”. Yes, I would love to sit, unsure of my fertility, waiting with teenage girls and gaggles of women, old enough to know better, looking up from their phone every so often to yell at their children, of which there were enough to populate a small village (apologies for the judgement there, but you would need to sit in this particular waiting room to truly understand). I brushed this off and booked an appointment.

And so I went in, armed with the name, contact details and credentials of the BSGE (British Society of Gynaecological Endoscopy) Specialist I wanted to be referred to.

“What is BSGE? I have never heard of that”

A reassuring start.

I explained my research, who they are, why I wanted to see this particular gentleman.

“But you have a specialist. I can’t refer you elsewhere. What is your specialists’ name?”

“I don’t know”

I really appreciated the condescending look I received in response to that. Obviously in truth, it was not well received but later I took a small pleasure in it.

I have been seen by many different specialists but never the same one. The result has obviously been inconsistent treatment plans and a general feeling of mistrust but it must be said – every single one agreed I had Endometriosis. So I was surprised when after searching the computer screen at length the GP announces:

“You don’t have a specialist”

It turns out despite all agreeing I have a lifelong, incurable and chronic illness, after every single visit, I have been discharged from the specialists. Maybe they didn’t quite appreciate my humour (read:Sass).

Now you understand the small pleasure in seeing his condescension be misplaced.

The Dr scanned my file further with grouchy mutterings of “I don’t understand why they’ve done that”.

I am nobody’s problem.

Eventually he agreed to refer me to my requested specialist. With much huffing and feigned inability to read the contact details on my phone screen (it must be said, he had no problem checking and reading his own phone throughout the consult) he typed up and sent the referral.

“I see you haven’t started Lupron”

Sigh. I explained my misgivings and the discussion with my former GP (I miss you Dr Brown!). There was that condescending look again.

“Lupron is very expensive, let me show you”

He then began to search his system for this magical drug, oblivious, or just plain deliberately ignorant, of my protests and advice the price doesn’t really apeal it to me any further. He twirled the screen at me.

“Oh my, that is expensive, my health and wellbeing must mean an awful lot to you!”

Is what he wished I had said.

As mentioned, I have worked at a GP surgery, I know how much he earns, those injections aren’t even a day of his wages. I have never been one impressed by money as it is, preferring to be that girl who responds to a compliment on clothing with exactly how much of a bargain it was, the various colours available along with the name of the store. Money impresses me even less when in regards to my health.

I responded with the same questions I gave the Specialist in October and left him looking a little perplexed at my clear lack of understanding that these were the dogs bollocks of treatment – they cost so much!

Once thoroughly convinced price wasn’t going to sway me he politely as possible excused me, reassured me that this new specialist would put me on Lupron and I replied, that is fine, so long as his plan for after the six months isn’t to “hope they have a cure by then” (the platitude this GP had offered).

I kept my cool, crossed the street to my home and collapsed on the sofa, exhausted.

Really who needs marathon’s when you have a chronic illness and Dr’s to contend with?

4 thoughts on “Nobody’s problem…

  1. Oh my: ARE YOU ME?! I can totally relate to all this doctor nonsense, went through it myself yet again only this morning. We’re nobody’s problem indeed.

    I’m so sorry you’re getting the medical runaround. Aaaaand with that , welcome to the world of endometriosis “care.”

    My best—and crappiest—sage wisdom from years of experience in this field is this: Get used to having to push (and push… and push…) your docs to do anything other than the bare minimum. Just when you think you’re done pushing and there might be an actual, I don’t know, *treatment plan*, be prepared to push some more. I mean push like a boulder… Uphill… With one arm… that’s broken.

    Interested to hear how the Lupron goes for you. My doc recommended it to me this morning as well and I refused as usual, although I think here in the USA Lupron isn’t nearly as expensive (but we have our own stupid healthcare hurdles to jump through, so maybe it all cancels out in the end).

    Liked by 3 people

    1. So far I haven’t yet even received my referral (sent over two months ago) and I won’t be starting Lupron, or any similar injections, until I know the long term plan. I know of ladies using it to manage and reduce Endo prior to surgery in order that the damage is more easily visible and then treatable but I’m not going to take a drug with terrible side effects (and I have read of some women whom suffered long term, not just short term) unless I know the end goal. And that goal won’t be to “hope they find a cure”!

      I’m so sorry you suffer this too 😦 I am truly my own advocate now but it’s absolutely demoralising (and I’m sure you feel the same) to go into an appointment, armed with information after really pep talking yourself, pinning hope on this Dr, and to come out feeling so hopeless and lonely. I can go into an appointment feeling like ten men and almost always leave in floods of tears because you are always made to feel like a burden, a hysterical girl who doesn’t know anything. I am just a patient they have an allotted 10 minutes for and they barely extend me the courtesy of that time frame before making it clear I’m overstepping.

      It’s so frustrating but as you say – keep pushing, then some more, and then a little more…


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