Post diagnosis limbo

[YellowDahlia]

Hi everyone,I had my lap in September last year and the surgeon said they found endometriosis, cysts, adhesions etc and removed them. This was all said to me as soon as I came round from the anesthetic and I haven't had any follow conversation yet.

I just feel a bit in limbo as I'm still experiencing some symptoms but tests are coming back clear and I haven't had a follow appointment with the surgeon yet (it's been over 4 months now since surgery) . I'm feeling really disheartened by it all and like I'm going insane. I thought this would all change after a diagnosis but I feel like I've been lumped with the Endo label and nothing else has been done to help with the continuing symptoms.

Sorry for a moan I'm just feeling a bit desperate 😭😭

Thanks xx

[OlgaSz]

I understand that fully as I am on the same boat!I had my laparoscopy in October where the surgeon told me I have endo, but nothing happened since. I asked while in the hospital (it was in a private hospital, but I was sent there by the NHS). The hospital said that I am not their patient, but the NHS one, so I will be contacted by my doctor. GP said that the hospital should have told me more or maybe the gyne will contact me. I asked for the details to the gybe, but they couldn't provide it. The gyne hasn't contacted me yet. I feel your frustration as I also thought that now I will get some answers, but I literally just heard from the surgeon straight after the anesthetic, when I was still super drowsy that I have endometriosis, but nothing followed. No treatment plan, no support plan, nothing. The only ongoing support I get is from Dr Google, where I search for everything I could and read as many research papers as I could find...

[YellowDahlia in reply to OlgaSz]

Thanks for your reply. I know it's not a good situation to be in but knowing it's not just me helps 🤦🏻 . I don't know if you have already tried this but I recently rang the hospital switch board to get in touch with my surgeon to find out what is going on with my follow up appointment. I'm just waiting for a call back 🤞🏻.

[OlgaSz in reply to YellowDahlia]

I know exactly what you mean, as I thought I am the only one being left alone in the dark. It does somehow helps that this is the case, rather than my situation is an error...

I will try to contact the hospital where my gynae is based, so maybe this way I will get some answers? It is pretty frustrating I must say.

[Emma2023]

I'm in a similar boat!!!!I had a laparoscopy in June, was diagnosed with endo. Before the op I was told if it was found that they would remove it only to find out after the op that they hadn't, they then told me to have a coil or go in the pill to fix it but this isn't an option for me as I'd like a family (43yrs, 2 miscarriages, time is running out)

Nearly 8 months on I still haven't had my post op appt or endo clinic apps dispite calling the hospital numerous times.

The info given to me post op was vague, I was still pretty hazy so didn't take much in. My husband was there but we didn't write anything down as didnt even think of it as was expecting some sort of report after. I have no idea what stage it is and what is happening next. I'm going to book a doctor's appt for next week and tell them I'm desperate.....I obviously still have all the pain from endo as nothing was actually done, I'm just left with the scars and ongoing pain in my stomach (the bellybutton scar) as whenever I lift over exert myself I feel it.

I'm totally in limbo and need to get on with my life, this is causing me a lot of unnecessary stress .

I feel your pain.xx

[YellowDahlia in reply to Emma2023]

Gosh! Really sorry to hear that that feels like the hospital team have been very negligible towards you. Definitely keep on pestering them. I hate doing it and the amount of space it takes up in my brain but it's the only option I have at the moment. XxThanks for replying.