Finally there, but what a struggle... - Endometriosis UK

Endometriosis UK

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Finally there, but what a struggle...

FN75 profile image
FN75
3 Replies

This is just a total, massive, lengthy (possibly unjustified) moan about the set of hoops you have to jump through to get anywhere.

After my symptoms started to flare up again back in May, my GP wrote a highly impassioned letter to my gynaecology clinic saying that I was in danger of having no quality of life at all soon, and I was very, very lucky that it was picked up at random the next time I went - nearly two MONTHS later, as they didn't reply - by a chap who was incredibly sympathetic.

(I have hemiplegic migraines as well as endometriosis, both are caused by my menstrual cycle, and when they hit together, I am in REAL trouble. The only thing which has ever helped both is Prostap, which is like a miracle drug for me. I've had two six-month courses and was so well during both of them that it was like having someone else's life given to me. However, gynaecology won't talk to neurology and vice-versa, so my treatment is extremely disjointed.)

We decided the next step, which was to go back on Prostap for a third time. which he said we could put into place as soon as I had had a scan to confirm that there was nothing more sinister going on. I had the scan on the 7th August, which was clear, and although he wanted to see me immediately after the scan, the hospital told me there were no available appointments until November. To save time, my GP rang the clinic the following day to ask permission to start the further course of Prostap. No reply, so she wrote to them a week later. Still no reply, until I was suddenly called in to the clinic on 30th September.

I saw a very junior doctor who had clearly not read any of the notes from the last appointment, put me through everything as if we were starting from the beginning (including a physical examination), and got very angry with me when I said I wanted to be put back on Prostap as I'd "already had it twice" and I was unlikely to get it again. He went off to check with the consultant and I was duly (and perhaps incredibly!) prescribed 12 months of injections, which for some reason wound him up so much that he spent the rest of the appointment acting very angrily. He was, in fact, determined that I should have both ovaries removed, which he was quite comfortable with. When I asked him when his letter about the prescription was likely to reach my GP, he snapped at me and didn't even 'end' the appointment with a 'thank you' or 'goodbye' - he just let me get up and walk out.

I'd have been waiting for ever for the letter to arrive with my GP, because after ten days I rang the hospital and discovered it had never been sent.

I then went through another farago in which my GP's surgery agreed to get a doctor to write the prescription, two days later decided they needed me to fill in a form, two days after that told me it had only just been raised, and four days later rang and said I was going to have to go in because they couldn't prescribe it without me seeing someone first...

During the wait for the prescription I was ill again and had time off work, triggering the sickness absence policy and requiring meetings with both my manager and Occupational Health. It strikes me that a 20-minute conference call between my GP, the consultant and me would have sorted this rather quicker, and saved three further bouts of illness and a lot of 'return to work' paperwork with my employer - but clearly my thinking about how the process COULD work is grossly unrealistic!! :D

I didn't think in a million years that they let me back on Prostap again, but they have, on the proviso that I have bone density scans to make sure I'm not about to shatter into a million pieces.

I am, now, frankly, knackered, but was suitably injected on Wednesday after another week's wait for an appointment with an available GP.

This post has no point other than to say DON'T GIVE UP!! The bureaucracy is horrendous, but eventually, just possibly, you might get there :D

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FN75
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3 Replies
Starstellar7 profile image
Starstellar7

Thanks for sharing. It's crazy the amounts of issues we have to deal with while feeling unwell. I hope things improve for you.

Mabes profile image
Mabes

Please complain about the horrible junior doctor to PALS. You should not have been treated like that. If they don't nip it in the bud imagine meeting him as a consultant a few years down the line!!!!

I'm so glad that despite all this cr*p you have actually gotten the outcome you wanted and needed. It is really hard not to give up.

sbactive profile image
sbactive in reply to Mabes

I agree, yes you should complain, the PALS service is very good, they are nice and really interested in improving the quality of care. Thank goodness because someone needs to!!

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