is my pain Endo + did it cause my miscarriages?

[Maybeendo]

finally a community that I can ask!

Please help as I’ve seen so many docs and none can give me an answer. I’ve had 3 miscarriages in 12 months. From ovulation from the 1st pregnancy and ever since I now have lower abdominal pain - maybe 3 out of 4 weeks of the month.

I never had this pain before including period time - they’ve always been ok. It’s not horrific but it’s an ache maybe 2/10 most of the time, and when on my period maybe 5/10.

My periods have always been heavy but ever since they’ve got worse and with clots. I have had countless ultrasounds that look perfect but a saline scan did show some adenomyosis. My doc however said adenomyosis shouldn’t cause chronic pain so far before my period.

I’m about to start ivf - retrieval only - to rule out chromosomal issues causing mcs. However - I refuse to do a transfer and suffer more mcs until someone can help me diagnose and sort the pain.

I’m constantly bloated, heavy periods and have aches. BUT the pain isn’t horrific - I can mainly carry on with my day if I had to. It’s just constant. So I’m worried to do an operation and it’s not Endo as I’ve heard it normally is horrific pain.

would love your advice. As the pain isn’t making me bed bound do you think I’m overthinking? No one can tell me why I suddenly have constant pain.

Ps I’ve done every other infertility test possible and have been diagnosed with clotting issues - but still miscarried on the meds. All mcs were under 6ws so too early to test

[Tangoandmax]

I’m not sure why the consultant has said Adeno shouldn’t cause pain outside of period. From experience, the majority of medical staff aren’t fully trained on the condition, you’d need someone who specialises in the disease.

I was told I had all sorts for eight years,IBS, water infections, ovulation pain, because my pain was always outside of my period, it turned out to be deep infiltrating endo and Adeno. I never made the link between my horrendous periods and endo, as everyone always told me they were normal. I ended up keeping a diary just to prove it was happening and see if there was a pattern. All of your symptoms line up with Adenomyosis.

From my reading, I think studies have shown woman with Adeno are more likely to miscarry. It’s absolutely worth reading up on it and challenging the doctor on if you need interim treatment to give you a better chance when doing IVF. I think they can try hormone contraceptive to try and shrink the Adeno/ give your uterus a break (so to speak) so you’re in a better place before implantation.

So sorry to hear about the miscarriages you’ve gone through, that must have been tough.

All the luck for IVF xx

[Maybeendo in reply to Tangoandmax]

My goodness - thank you 🙏🏻 I can’t tell you how many doctors, miscarriage specialists, family and friends have put my constant pain to ‘stress’, or my favourite, ‘in my head’!

[Tangoandmax in reply to Maybeendo]

Yeah I got stress a lot too. I promise it is not in your head, they make you feel crazy, it’s appalling.

It’s absolutely unfathomable how little general medical staff know about Endo/Adeno. The level of progress educating/treating the disease has also been piss poor.

Hoping that now more people are talking/shouting about it they’ll be more progress. Woman’s health deserves better!