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No longer any idea what's going on!

3 replies

Pamspeople · 07/04/2024 12:56

Apologies, this is a bit of an epic - but if anyone can helped me sleuth out what's going on and where I'm at, I'd be very grateful indeed.

I'm 54, and have had painful periods since adolescence. Was put on the pill as a teenager to manage my difficult periods, stayed on it until about 40.

From coming off the pill, periods became increasingly painful and heavy again, crashing fatigue. Looking back I'm wondering if all this time I've maybe had endo or something, but it's always been just 'painful periods, oh well'.

By 47/48, finally accepted advice to try Mirena and it was life changing - fabulous. Bleeding pretty much stopped, very little pain. Glory, halleluja!

By then, I was also having peri symptoms - aching, fatigue, then hot flushes and disrupted sleep.

Started on Estrogel, with Mirena providing progesterone.

3-4 years later, started spotting more, pain more, itchy boobs - thought Mirena probably running out? Made appointment to have it removed but it had gone missing - took a year of delayed appointments before finally got a hysteroscopy to have it removed. Had been so stressful I thought I wouldn't have another one thank you.

Onto utrogestan with the estrogel. Cue hideous flooding again, like before Mirena. Decided to have new Mirena put in a couple of months later.

Since that one went in (or perhaps slightly before, really don't know) have had a brand new pain in lower right pelvic area. Absolutely relentless, really affected my mood.

Spotting every day, some period pain but not on any pattern I could discern. Plus this new very localised pain in lower right hand side. Had ultrasound, all looked fine but casually told (6 months after the scan) that I have adenomyosis.

Decided to have Mirena removed in case it was somehow causing this new pain. That was two months ago.

Since then - sadly no change. Still got the lower pelvic pain on right side, perhaps less often. Had flooding for a week when not on utrogestan, now taking utro for two weeks and feel groggy and low mood but not bleeding and less pain.

Any ideas on the following would be very welcome:

  • am I peri or post - I no longer have any idea what my 'natural' cycle is or when I last had a 'normal' bleed
  • would the three month regime be something to try?
  • what the hell is this lower right pelvic pain? I'm wondering if it's endo, and I've never been diagnosed - although if it is, does that change anything?

Thank you to anyone who has read all this - it's actually been helpful to write it all down. Will cut and paste as prep for my next GP visit!

OP posts:
JinglingSpringbells · 07/04/2024 13:59

Speaking from my own experience, I've had slightly different diagnoses from consultants using ultrasound and even the best can view things differently. (Diagnosed with some adeno very late on by a very specialised consultant.)

You could perhaps have endometriosis, as well as adeno (or maybe the adeno is really endo.)

To diagnose endo you'd normally need a look inside (keyhole surgery) not just scans although a true expert may see something on a scan.

If you have endo and adeno there are two things going on-

endo is stimulated by estrogen and women using hrt are advised to use continuous (to prevent the growth and shedding on cyclical.)

adeno also causes pain and also heavier periods.

You really need a full and proper diagnosis. If your adeno is very bad, you might be offered a hysterectomy although that won't sort out the endo.

Neither is probably bad enough to get prompt treatment on the NHS and it also depends a lot on who does the scans. There is a huge difference in expertise.

I'd also push for a thorough look at the pain on the left as it could be your ovary or even something unconnected, such as your bowel.

JinglingSpringbells · 07/04/2024 14:00

sorry- meant your right hand side.

Pamspeople · 07/04/2024 14:45

Thanks Jingling, I would happily buy you a drink just for reading through all that!

My best years were with the first mirena and the estrogen gel, increasing the gel over time as symptoms re-emerged. I had hoped that it would be like that again with the second mirena but the pain has been different and weird and not helped by naproxen or anything. I even bought a tens machine but didn't like it.

I'll try and see the GP again this week and ask for an investigation of the right hand side pain, in case it's something separate, bowel related or something.

I'm pondering getting a private consult but not sure whether with a gynaecologist re adeno/endo/please-can-I-have-a-hysterectomy or a menopause specialist.

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