Doctor makes it seem like I want to have surgery and not like I actually need it

[JustPain2]

After struggling with severe constant daily pain for a year and a half, a gynaecologist has decided to put me on a waiting list for surgery. I didn't go see him requesting to be put on a list, but he thought it'd be a good idea because hormonal treatment hasn't worked, and painkillers don't help.

However, because of how badly I feel, partially because I don't know when the surgery will finally happen and I can't see an end to this pain, I've been trying to take sick leave from work. But the letters I've got from the doctor don't seem to help, phrases like "it wouldn't be unreasonable to perform surgery", "you have opted for surgery", "this is not based on the result of your scan but on your desire to have surgery", etc.

Why do they do this? I live alone and I'm failing to take proper care of myself because even showering is difficult. Why do they make it seem like this is something you want to go through? I feel so unheard. I wouldn't be surprised if my supervisor assumed I'm mentally ill instead of physically ill.

All the scans have been consistent with endometriosis and shown endometriomas and adenomyosis.

[HT267]

Hi Justpain2, I completely empathise with how your feeling ! Whenever I go to gynae I have a helpful conversation and feel understood but then the letter sent to GP always just sounds like I'm making a fuss. ' I have put her on the surgery list for now but explained we may not find anything'. As far as I understand I think that they label anything that isn't an emergency as 'elective' but really does imply that we don't need surgery or help which doesn't really help does it!

X

[Hope264]

Hi, Disappointing to hear in 2023…Can empathise too. All I can say is don’t buy in. Be strong. Do what you need to do. It is your body you have to live in. If your in England use this forum or facebook group to educate yourself & find the pathway to best surgery option - or visualizing/ imaging options it seems they are not all equal these days - have you had pelvic ultrasound? If it is happening on your cycle, know yourself you most likely have endo…tens & heatpad can be helpful on days when nothing else works. Good luck

[JustPain2 in reply to Hope264]

I've had two ultrasounds and a MRI, and all of them have been consistent with endometriomas. The MRI showed adenomyosis as well.The issue began around 10 years ago (I'm 34) with very heavy periods and dyspareunia, but the tests would show nothing wrong. So, I was told heavy periods were normal for me ("that's the way you are"), and that my dyspareunia was psychological because I was afraid of getting pregnant. I would be permanently taking iron supplements.

The pain now is constant, 24/7, it won't let me rest properly and I even find it hard to have showers. I only exist because of codeine.

[Cailleach]

What surgery are they actually planning to do? Is it a diagnostic laparoscopy or do they plan to excise endo at the same time/ remove the endometriomas? Have they discussed how surgery could help, or what the other options are?

I think as another answer said, it is worth you looking at the NICE guidelines for endo as there is a recommended treatment pathway given. It is sounding like your gynaecologist is not recommending a treatment plan at present, only surgery ‘because you want it’. I wonder if he is a general gynaecologist and how much experience he has of endo.

Your GP should be able to help at present, by giving you a sick line based on your current health issues, as described by you, by contacting gynaecology to update them on the impact of the endo on your health at present and maybe get the surgery date brought forward, if that’s what you want, and also by reviewing your pain medication. There are many options for pain medication and often they can be taken in combination.

I know it is really hard to pursue all this and push for people to help you, when you are already tired and in pain. Hope things improve soon x