Next steps after suspected endometriosis and adenomyosis with worsening symptoms

[Yogabearr]

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.

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.

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.

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

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.

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.

It's actually very common for women to be adverse to synthetic progesterone.

i wonder where you get that information- as generally in gynaecology huge numbers of women get on really well. Some have adverse effects but many more have good effects. I also suggested two other things as well

Synthetic progesterone (progestins) is not tolerated equally by all women. Research has shown that a significant proportion experience adverse effects, and in clinical practice it is not uncommon for around one in five women to discontinue treatment because of side effects, although rates vary depending on the specific medication and study. From both the published medical literature and my own experience, as well as the experiences of many women I know living with endometriosis and adenomyosis, it is clear that synthetic hormones can have profound physical and psychological effects. Their chemical structure and activity differ from the body's natural progesterone, meaning they can affect individuals very differently.
I appreciate that the NHS follows evidence-based guidelines and offers treatments that are considered the current standard of care. However, many people with endometriosis and adenomyosis continue to face significant challenges despite these recommendations. There remains a lack of specialist knowledge in some areas, and many patients feel their individual experiences are not adequately recognised. In particular, there is ongoing debate within the medical community regarding endometrial ablation. While it may be appropriate for some conditions, many specialists advise that it is not a treatment for endometriosis and, in some cases, may worsen symptoms or complicate diagnosis and future management, particularly where adenomyosis is present. Greater awareness of these nuances, alongside more personalised care and improved access to true endometriosis specialists, is essential. Your tone is very dismissive, almost like the majority of gynecologists.

Dd has had issues for years that were suspected to be endo related. She had a laparoscopy and they discovered that the endo wasn't the biggest problem, it was in fact adhesions thats didn't show up well on ultrasound or mri. These were removed and she has been so much better since, including many bowel related symptoms that were affecting her badly and stopping her going out to eat and always having to be aware of what she was eating and proximity to a bathroom. Her periods have also surprised her several times now as they're no longer accompanied by severe cramps for the week before. The gynae who performed the laparoscopy told her she didn't think she'd find adhesions as they don't cause pain but she was so wrong and surgery has been life changing.