I need advice

[Pinkhedgehog24]

Hello,

I’ve just had my first follow up appointment since being diagnosed with endometriosis and I think I’ve left with more questions than answers. I was probably in there for maybe 10 minutes and felt very rushed (I’d never had surgery before my laparoscopy 12 weeks ago).

I told him despite them removing all they could see I’m still in discomfort/bad period pain and he said that it may be wise considering if something else was behind the pain alongside endo. He told me again about getting the merina coil which I’m not sure I want but he was highly pushing this. And I left with a follow up appointment in 3 months and 3 months worth if Ryeqo (which apparently gps haven’t started prescribing yet). However he told me very little about the actual pill. And then we’ll see where I’m at in 3 months again

I asked if what if there was some they didn’t see so didn’t remove and he said it was unlikely mine would grow back and if it does it would be small bits near where they removed it to begin with. (Which is contradictory to what I found online) I don’t even know which stage of endo I have.

I finally thought I’d found an endometriosis specialist who took me seriously as when I first saw him with my symptoms he said within 5 minutes of the appointment that they would do an exploratory laparoscopy.

I have absolutely no idea where to go from here so any advice would be really helpful. It felt a bit like now they’ve removed endo I no longer have it?

Also, I know it varies between everyone, but if anyone has had to go through a reasonable adjustments meeting with HR in regards to endo, do you have any tips/advice on what to ask them?

Thanks!

[Cailleach]

Sorry you have not found the laparoscopy has improved things much. Was this a surgeon in a general gynaecology department, and do you know how much experience and training he has in endo? You are right in thinking it’s possible that some endo was missed during your lap. Unfortunately a lot of these doctors, even the most experienced, seem uninterested and dismissive when their treatment has not been effective. Other than ask for a second opinion or see a specialist privately I don’t have anything to suggest.

My own experience of the coil was negative, but some people have found it effective. Maybe read back old posts here for different opinions? It relieves the symptoms, it does not stop the endo.

Re your work issues: have you asked about a referral to your employer’s Occupational Health Service? They are confidential but can make recommendations to your employer about how to help you continue at work.

If you are seeing HR, you do not have to discuss your medical details if you don’t want, only what you need to help you at work. Some ideas are changing hours, breaktimes, start and finish time, lighter duties, being able to sit down, having easy access to a toilet. You need to think about what would make things easier for you and come up with a way they can provide that. It helps to think about it from their point of view too, as they only have to make ‘reasonable adjustments’ ie those that don’t cause them much problem.

It might help to consult a union. You can join one even if they are not recognised in your workplace and they can be a good source of advice. Also have a look at your employer’s policies on disability, equality, sickness absence to make sure they are following them.

Hope this helps xx

[Pinkhedgehog24 in reply to Cailleach]

Thank you for your reply. It is really helpful. I hadn’t thought of many of your suggestions.

Yeah both the surgeon and referring dr are endo specialists.

It can grow back can’t it? The appointment left me doubting everything I thought I knew x

[Cailleach in reply to Pinkhedgehog24]

It can grow back, but this seems quite a short period of time for that?

[Pinkhedgehog24 in reply to Cailleach]

Sorry haha I meant in general about it coming back.

It hasn’t been that long which is why it’s a shame the surgery hasn’t seemed to have much much difference 🤷‍♀️ xx