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Next steps after suspected endometriosis and adenomyosis with worsening symptoms

5 replies

Yogabearr · 15/06/2026 09:14

I'm looking for advice, as again I feel let down by the NHS and wondered if anyone else had similar experiences with a solution.

After an ectopic pregnancy (more complex than that) and ultrasound showed suspected endometriosis and adenemyosis accompanied by 2 umbillical hernias from pressure and a glue ovary to uterus. From my research, for this even to be seen on this scan means it's advanced. Waited a year for a gynecologist with pain and bowel symptoms now worsening (possibility of that sticking too).

The gynecologist said just go on progesterone (I can't) or mirena. No offer of further tests to see advancement in a year. Progesterone is a drop in the ocean at this point. I requested an MRI for confirmation. Said it'd probably be refused as they tend to do Laparoscopy. However an MRI would show it if an ultrasound does at this point (I get for early stages it won't). No plan, no further advice.

This is a full body disease that spreads and severely affects my quality of life. I know the consultant must have limited knowledge. Anyone know of next steps? I'm considering healthcare in another country that's informed about this, and I also have PKD, which means the room in my abdomen is getting worse and putting pressure.

OP posts:
LapinR0se · 15/06/2026 17:15

I have endometriosis and adenomyosis. Had a Mirena put in last year and it has been absolutely life changing. I don’t actually have a period any more.
it was this or a hysterectomy so I was at the end of the road of options.

YellowDogg · 15/06/2026 17:17

What are you looking for from an MRI? An ultrasound has already pretty much confirmed it. You’ve had a diagnosis - the next step is treatment. A surgeon may want to do an MRI before surgery, to help plan better for the surgery itself, but it’s not necessary.

Treatment is usually surgery and then some kind of hormone therapy like progesterone.

Request a consultation with an endo specialist, not just any gyne consultant.

Winterwalks90 · 15/06/2026 17:20

I have adenmyosis and suspected endemetrisois. I refused all hormones gynea offered me as these are just bandaging over the problem. They offered me an ablation for the pain and bleeding which has a 50/50 chance of working. I’m also having a laproscopy to check for the suspected endometriosis and if they find any they will cut it away.
the only thing that would cure me is a full hysterectomy ovaries included but I’m only in my 30s

Yogabearr · 15/06/2026 21:04

They've told me that they need more confirmation before they look at surgery, and I thought an MRI would be less invasive, but still give results if it's advanced enough to show that significantly on ultrasound.

OP posts:
Jewelcake · 15/06/2026 21:16

Endo and adenomyosis are chronic diseases so need long term treatment.
mri is an ok start however if this has already been seen you need to decide on treatment. Even if you have surgery you need to consider your long term treatment which in general is down regulating your periods. You can do this with progesterone or ryeco. Very unusual not to be able to have progesterone- either MH - then consider mirena as less systemically absorbed or you have to have active breast - or liver disease. First thing will always be progesterones or GNRH or ryeco.

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