Reoccurrence of endo

[Ps-endo]

hi!

I’m just looking for a bit of advice regarding what to do if you believe the endo has returned.

Some background, I’ve had 2 laparoscopies and removal of endo, the first in 2021 and the second was November last year. However I feel like my pain is worsening again and it’s becoming more and more unmanageable now. I have stage 3.

I am still under the endometriosis specialist consultant at my local hospital, but only until January next year when I’ll be discharged back to general gynaecology. I’m awaiting an appointment for the Chronic Pain team, however I know my body so well and I believe the endometriosis is coming back in full force, so I guess my question is what would you do in this situation? Should I contact the consultant again? Would they put me forward for any investigations (mri etc) this soon after my excision surgery? I feel super anxious about it as (probably due to medical gaslighting) I feel like I’m being so dramatic, and will it even come back this quickly?

[charlatan]

Hi,

I had my endo removed September 2022 and I also feel like mine is coming back. I really don't want to do anything about it quite yet as the I can handle it at the mo without having to endure zoladex shots and what have you. Anyway, my consultant told me that the endo would almost certainly come back 'within 5 years' and that when I started to feel pain again, I should contact them. I realise you're a fair bit off the 5 year mark but that's just an average. The unfortunate reality is, until we hit menopause, we're stuck with this. There is no cure but there is treatment and the sooner you get it, the better. It'll ensure that it won't get as bad as it once was and that's in everyone's best interests, including the NHS. So, my advice to you is to absolutely get in touch with your consultant. You know your own body and you know what endo feels like, so if it feels like it's back you're probably right and they'll know that too.

Best of luck x

[Lofty1589 in reply to charlatan]

Just to say Endo can continue past menopause as well!

[charlatan in reply to Lofty1589]

I think that's only if you go on to HRT. Isn't it? Who knows, I get told something different every time I speak to these people.

[Leprechaunsam]

Hi

Absolutely get back in touch with your specialist. It absolutely can come back that quickly. There are so many factors that go into it including the type of surgery you had (excision vs ablation), the stage of your endo, the healthiness or otherwise of your cycle, hormone balance, other illnesses.

And thats just for starters. It really sucks when we have so often experienced medical gaslighting, and unfortunately there is no guarantee that wont happen again, but you should absolutely still get an appointment with your consultant booked in

x

[Aggie2023]

I had endo removed in dec 2023 I have had it removed 4 times now this time by march it had returned and attach to my right hand abdominal wall my rectum ,bowel and pouch of Douglas I had surgery again to remove it in may 2024 and am still back to square one with pain. This has gone on for about 7 years now my hip is also killing me to walk as thay are saying the scar tissue from each operation is piling up xx