Frustrated, fed up, let down : It's 4am and... - Endometriosis UK

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Frustrated, fed up, let down

jennt0506 profile image
5 Replies

It's 4am and I can't sleep because I'm in agony, despite all of the ridiculous pain meds I'm on. I had my consultant appointment today and to say I feel let down is an understatement. The woman hadn't even read my history, suggesting I just "need the pill" and "could be pregnant" despite an A&E scan showing a large endometrioma cyst 4 weeks ago (and a false pregnancy test - because obviously, I'm a woman who has sex, I must be irresponsible and pregnant).

My consultant wants the same, painful scan redone because "it has been a while", despite the fact I am sure the cyst has grown because I've gained 2kg in that time, while struggling to eat, and the pain is now radiating towards my belly button.

I posted a while back about my left side pain, I ended up in A&E because of it. I have endometriosis diagnosed, and I guess what I find infuriating the most is I truly believed I might be taken seriously. I have gone 8 years since my last surgery coping and managing and perhaps that's the fatal flaw - I've coped this long, so why now.

Meanwhile I've had another week off work, another week I can't make it to University. I feel chained to my bed and my sofa, foggy from all of the meds and still in agonising pain. I have a good day and then bam, 5 bad ones. I feel utterly hopeless to be honest and really I just needed to write it down, to say it somewhere.

Today I felt as if the consultant thought I was playing up my pain. Despite already having had surgery, and having had endometriosis for 10 years, four weeks ago was the first time I have ever gone to A&E with the pain. I have fainted, been sick, etc all before and that was the first time. Why isn't that enough for them to see? I'm tired of seeing the assumption behind their eyes and hearing it in the tone of their speech that I'm putting this pain on. And what for?! For a sick note that will earn me £50 a week compared to the £300 I would usually earn?! For another invasive surgery that last time involved complications and 4 weeks off of work?!

Sorry, this is a massive rant, probably not what this forum is for at the end of the day. I have some amazing friends around me being so supportive, but I just still feel hopeless and let down by the medical profession and tired of fighting to get the help I need just to be able to live a normal, basic, healthy(ish) life.

Sorry to anyone this might upset, I don't mean to scare anyone just starting on this journey or in likewise circumstances. I just needed to get it out.

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jennt0506
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5 Replies
SarahMia227 profile image
SarahMia227

I'm so sorry to hear you're going through all of that. There's nothing worse than going to see a doctor and having them not believe you - as you say, why would we lie? xx

jennt0506 profile image
jennt0506 in reply toSarahMia227

Thank you, I really appreciate it. It's saddening to be honest xx

Sfr204 profile image
Sfr204

So sorry to hear your story, I really feel for you. You must feel angry frustrated let down and at your wits end. Can you try and see a different consultant or get a second opinion? There are some good doctors out there it can be vloodt hard to find them though. Stay strong - you’re doing amazingly well. Sending positive thoughts xx

jennt0506 profile image
jennt0506 in reply toSfr204

I feel a little better today after spending some time with friends and getting it all out, but it doesn't ultimately help the situation. I'm going to push through with her, get the tests she wants (again!) and then essentially demand the surgery at the next appointment. I cannot afford to keep missing work, cannot afford to be basically chained to my bed, I can't see how any consultant could keep me facing that. I'm going to get a copy of my medical history as well, because she hadn't even bothered to look at my history - so this time I'll go in armed with my history and make sure she sees it all written down, so she won't try and put me back through the same hormone treatments or the pill as a fob off.

Thank you, I really appreciate it. This community is such a lovely one xx

Sfr204 profile image
Sfr204 in reply tojennt0506

I think you’re right to go armed with your history. Be as calm and articulate as you can, be descriptive and explain your symptoms, the impact on your life and what you want done. If you can - sit there and wait until you get what you want. Well done for getting out and about, sometimes it’s the best thing to get it off your chest be it online or in person! Xx

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