Need help in what to expect when going back to the doctors about endo

[Honey89]

Hi everyone I’m wondering if any of you can help. I was diagnosed with endometriosis around 2017 and had an operation for it in 2018. This improved my symptoms for a few years but I’m at the point where I feel like a new operation/seeing a gynaecologist will be beneficial as my periods are horrendous again

I guess my question is if I was to go to my GP and ask to be referred to a gynaecologist, so I can discuss treatment options with them, is it just as straight forward as me saying in my appointment ‘I have endometriosis and would like to be referred to a gynaecologist for some help’? It’s a new doctors for me so I’m not sure how good they are or not.

Secondly can anyone give me a rough idea of what to expect in terms of wait times for a referral and how quickly or slowly things are moving?

I would appreciate any help as it’s been a few years since I’ve had to go through this and I’m already an anxious person when it comes to doctors appointments. Thank you 🙂

[FrecklesandFlowers]

Hiya! I'm still awaiting a diagnosis, but to answer your second question, it took a year after the GP referred me to gynaecology have a phone appointment with one - that was Feb 2023. They said I'd need another appointment a year later but Feb 2024 came and went with no appointment or phone call and I'm still waiting. So I'd say at least a year!

[Honey89 in reply to FrecklesandFlowers]

Wow I can’t believe how long you’ve had to wait that is outrageous! These waiting lists are really out of control. I hope you get some answers soon.

[Sunset-lady]

Speak to your GP and just explain the situation. Let him suggest treatment options rather than you demanding it. I'm all for women asserting themselves but in all of this, I've found that the medical profession don't like to be told what to do so just listen to what they offer first and then ask to be referred. It will be a 10 to 12 month wait. I had an abandoned hysterectomy due to stage 4 endo back in September and my endometriosis specialist appointment is July. However I paid £200 and saw him last November. He gave me a treatment plan which he sent to my gynae and I've been on zoladex since January. I can't imagine what would have happened if I hadn't paid! Take a note pad with you to the appointment. I always find that people are much more careful when they see you taking notes xxx

[Honey89 in reply to Sunset-lady]

Thank you for this. I think it’s just because I’ve had doctors dismiss me before and try and get me out that I thought maybe if I asked for what I wanted then it might go smoother but I will definitely try your way and give these new doctors a chance. Can’t believe how long the wait time is though! Makes me despair a bit actually but glad you got your treatment in good time 🙂

[Sunset-lady]

I'm 51. I was dismissed for YEARS xxx been shouted at by GPs and told by one doctor that it was all in my head. I'd love to get them all in a room now. Be prepared, polite and persistent xxx you'll get there

[Bookworm3371]

I would definitely tell them you have been diagnosed and treated for it, that your symptoms have returned and you’d like some help to treat them going forwards. It’s always good to go in with an open mind BUT you know your body and you know what’s happened to date more than a GP in a rushed appointment will so don’t be worried about being clear on what you need. It’s also unlikely previous notes will be available, or read if they are. I’ve lost count of how many appointments with my first gynae I attended to be told they haven’t got my scan (that they ordered, that they asked me to attend an appointment to discuss 🙄).

I moved areas in recent times and the help I’ve had here has been much better. It is unfortunately a lottery with locations and waiting lists but you can ask your GP about wait times and also there is something called NHS choices that might be worth a google. I hope your appointment goes well x