Could my endometriosis be back?

[Emmajenks]

You can see from my bio I had endometriosis diagnosed and abated during a diagnostic laparoscopy in July 2018. I had mirena fitted in December 2018. No immediate fix - years of investigations took its toll and I also started low dose antidepressants. A few good years and zero periods since 2019 but for the last eight weeks or so I have had debilitating nausea, fatigue, some spells of diarrhoea and just so achey and shaky - with pulling sensations in my ovaries and right hand side. Again had numerous blood checks and a pelvic and abdominal ultrasound - all normal results. Apart from another check coming up with the colrectal team next week I'm wondering if, even though I'm not having periods. Could this possibly be the return of endometriosis? Does anyone else experience these symptoms without a period? I also wonder if after 4 years I could benefit from changing the mirena coil too which is next on my gps tick list. It's really taking a toll on my mental health and I've already increased my antidepressant dose last week which is giving me horrendous sie effects on top of everything else!

[Fizzypoptastic]

Hi,

I also have the mirena & was told I would need to have it changed in five years time. The hormones being released could have depleted in your case & may be causing these issues. It’s worth requesting a change to rule this out.

Good luck. x

[HotDiggidy in reply to Fizzypoptastic]

I also had my last endo surgery in 2019 and 1 baby and 18 months of breastfeeding later I have started getting symptoms in february that I think are endo related. My symptoms are mid-cycle. I would suggest you push for an MRI which is within the NICE guidelines to do. Internal ultrasound is not a particularly reliable way to see endo and the guidelines are clear that a negative ultrasound should not rule out the possibility of endo.

[gujipai]

Hi Emmajenks, I'm sorry to hear what you are going through. I had an endo cystectomy surgery done in 2018 and did not go on any hormone treatment, so recently the endo has spread to other organs deeply. What really helped was the MRI scan I went for - it provided better imaging and clarity that was not able to be picked up from the ultrasound (i was actually relieved when i got the results, turns out all that tugging pain i felt was real and i wasn't crazy !) I would encourage you to insist on getting a referral to see an endometriosis specialist gynea consultant if possible and have an MRI done to rule it out.

FYI - this is the guideline for endo diagnosis that doctors should be aware of and MRI is one method to diagnose, although not the only one:

nice.org.uk/guidance/ng73

eshre.eu/Guideline/Endometr...

Do note that there might be an update to the NICE guidelines soon: edm.parliament.uk/early-day...

All the best and take care!

[Reebs11]

Hi I also have the mirena in and they told me 5 years but had to change it after 3 years but just found out my endometriosis has come back and now waiting for surgery again

[Emmajenks in reply to Reebs11]

Can I ask what your symptoms were please and how did you know the endo came back and that it was time to chamge your coil? I haven't had any bleeding- but the nausea, fatigue and diarrhoea etc as well as pelvic cramps are back. Sorry to hear you're on the wait for surgery again.

[Reebs11]

That is the symptoms I had, also my stomach kept swelling up on one side, I was also bleeding every two weeks, I saw a gynaecologist and she suggested to change the coil see if it would help but symptoms was still there - diarrhoea and constipation, nausea, struggling to eat, fatigue terrible pain in pelvic and lower back area.

Hope this helps