At what point can I definitively say I have endo/adeno?

[gettingusedtoendo]

Hi,

I have been on a waiting list for laparoscopy with excision (cysts in uterus, adhesion between uterus and rectum/bowel) for a while after these were seen in my MRI and ultrasound. Thanks to amazing advice (thank you!) on here I’ve now managed to get my GP to refer me to a BSGE-accredited centre (no appt yet).

However, I was wondering at what point I can definitively say i have a diagnosis? Consultants have said ‘suggestive’ of endometriosis and adenomyosis, but no one has actually confirmed I do have it.

On one hand, I have been told that adhesions on the bowel are likely to mean deep infiltrating endometriosis , and that MRIs can detect endometriosis—that laparoscopies are not the only means. On the other hand, the consultant I saw previously told me he did not think it was deep infiltrating because, when he examined me internally, my uterus was mobile etc...

I know my eventual lap will tell me everything I need to know, but in the meantime everything seems so contradictory and with the return to office approaching, I want to feel I am justified in asking for work from home days and other considerations.

I’m really hoping the BSGE centre will be more helpful. Like, I haven’t even been sent an information pack or anything from my local hospital, and there have been inaccuracies on my letters.. just frustrating

Many thanks

L

[Hunter-23]

I would say after a laparoscopy and the surgeon tells you for certain it is.Good luck!

[AllthatGlitters]

Hey if it were me I would say I had a definite diagnosis once the consultant has told me, prior to that you are under investigation for endo etc ….. good luck and hope you get answers soon x

[Rose153]

Hey, so sorry you are going through this. I am in a similar position and going for an MRI on Monday. Would you mind me asking what your symptoms are? I have had an ultrasound which showed a bulky uterus with thickening in the middle zone (can't remember the name), and a cyst on my left ovary. Bowels are all over the place just now too. It's quite unnerving.

[gettingusedtoendo in reply to Rose153]

Hey, good luck with your MRI. Really hope you get some answers from it. Has anyone suggested adenomyosis to you? I think thickening of the uterus is a synptom. I believe I have adeno as well as endo but it feels like it gets treated as a footnote to endo in terms of exposure/articles/support. Appreciate that’s not saying much as endo itself is so sidelined!

My symptoms are strong, gnawing pain which feels like it’s in my rectum, radiating out to lower back, upper legs, pelvic area. I get the feeling of needing bowel movements when I don’t actually need to go, and upset stomach. Sometimes it’s a dull pain, sometimes I’m absolutely crippled by it. It seems to come on mostly mid cycle but some months i get no pain.

Symptoms really do differ for everyone. For instance, I don’t bleed apart from on my period whereas i think for some people it’s often? My periods themselves are not actually very painful. Weirdly.

Best of luck, and if you have any questions etc that’s fine x

[Rose153 in reply to gettingusedtoendo]

Thank you. Oh that sounds rotten for you. I have bowel issues too, awful pain during my period, the feeling of needing to go and pressure. The pressure seems constant just now and is driving me mad. My consultant suspects adenomyosis and possibly endo. Hope your lap is soon x