Feeling abandoned by Hospital - Advice?

[_Noo_]

Hey all,

I am at a loss at the moment. I have Endo, adenomyosis and colitis. I have had 3 laps and on various medication.

January 2022, my treatment has been moved from Gynea to Pelvic Pain Management and I was put onto the Zoladex injection and HRT - for 6 months..... however it never stopped and just continued.

Since December, I have been having bleeding/periods and notified the hospital who seemed quite disinterested so assumed this must be normal. A follow up call a month or so ago, advised still bleeding and pain on left side really bad. I used to get a lot of cysts so was worried this could be happening but was told because im on the injection it wouldnt be as its shutting my hormones down - yet I am having periods! And for the periods, they would review wether to change my injections to every 25 days rather than 30 and would let me know.

Didnt hear for quite a few weeks and this week, a letter arrived stating: We recommend the Mirena Coil, please speak with your local GP, they will arrange an ultrasound as 'I' am worried about cysts. and that they deem my pain to be muscles, hormones and lifestyle.

I feel really offended by this.

1, I cant insert anything without ridiculous pain - surely with my history this should be discussed

2, I feel like I am being considered as a 'its in your head' case. Why.. is it me???

3, This hospital is a specialist for Endometriosis. Never ever had a grumble till Covid struck and now its like no-one cares and I am more of a nuisance!

I dont know what to do!?

[Purplehaze01]

I’m kinda in same situation. 3 laps last one 4 years ago found no active endo. Got mirin’s coil but still bleed and in constant pain. Has the zoladex injection for 3 months but pain didn’t subside so was told last week I’m being referred for an mri and pain management then discharged back to GP. It’s heartbreaking to think the consultant thinks it’s all in my head. I’m just going to see what the mri brings up if anything.

[_Noo_ in reply to Purplehaze01]

So sorry to hear of your situation. Its just awful. I don't understand how it can be changed so rapidly without proper discussion. Just remember its not in your head and nor is it in mine. Really hope you get more support

[Cailleach]

I think you should seek a second opinion - or a first really as no one is actually seeing you. They seem to be changing their minds about your treatment without actually explaining it to you.

Would your GP be willing to push for you to actually be seen to discuss your treatment options with a specialist Gynae? Or would using the hospital’s complaints system be an option?

I think, without being completely familiar with different parts of the UK, your GP could refer you to a different BSGE hospital if that is a geographical possibility for you.

Another option would be to have a private consultation.

I am definitely no expert but I thought that Zoladex is usually only prescribed for 6 months.

It is definitely worth having the ultrasound anyway, but unless it is with someone with specialist training in endo it may not show all that is going on,

It is a really crap feeling when no one is willing to actually see you or explain anything. Xx