Diagnosis by hysteroscopy?

[Chrissie66]

Hi all

My cousin, who lives in Australia, is in her early 50s. All three of her children were delivered by c section. She has always had bad periods but recently things have ramped up with the bleeding becoming much heavier.

Her doctors did a hysteroscopy and found fibroids and adenomyosis. However, they also gave her an endometriosis diagnosis and want her to have a hysterectomy based on what they found.

It is many, many years since my diagnosis and I am sure many things have changed. However…surely endo by its very nature can’t be diagnosed just by a quick scope of her womb, can it? Adeno and endo are separate conditions; I don’t understand how they’ve given her an endometriosis diagnosis on seeing the adenomyosis, or decided that hysterectomy is the answer. I mean, I understand that taking the womb away will cure the adenomyosis but they’re suggesting it for endometriosis which is bonkers on many levels.

I’m in the UK and thought I was quite familiar with how endo works having lived with it for more than 33 years. But maybe not. What is the standard for diagnosis in Australia?

[Moon_maiden]

Hi

Not sure about Australia, I’m UK but was diagnosed Endo in 2020 at 51. Had initial op private and was worse than he thought, had hysterectomy later that year. Had lots of Endo/adhesions, fibroids and enlarged uterus. I never had children and just ignored bad periods etc.

I’d imagine your cousin has a lot of adhesions from previous op let along the inflammation from Endo. I really hope she gets sorted soon.

I think that perimenopause or menopause throw out the balance even more when Endo is involved

[Chrissie66 in reply to Moon_maiden]

My worry is that as far as I can tell, they’re only offering her a hysterectomy as treatment, without having a full look at her insides to see whether it’s even an option. The last time my gynae was inside my pelvis she sought opinions from bowel and bladder surgeons and all three of them were in agreement that it was so messy in there that any interference had an unacceptably high risk of causing damage to my other organs. And, of course, hysterectomy is often not the solution for some women anyway.

[Moon_maiden in reply to Chrissie66]

She definitely needs an MRI to check for deep infiltrating, bowel etc. Just having a hysterectomy is unlikely to work without the specialist knowledge, absolutely agree with you.

Did they not touch any of yours or are they planning a multi disciplinary op?

I know there are Endo specialists in Australia but not sure how many exist. There does seem to be quite a bit of research out there. Has your cousin looked at the Australian Endo society website?

[Chrissie66 in reply to Moon_maiden]

They’re leaving me be now, unless a crisis occurs obviously. It would be a huge op with the risk of creating new problems; I’m fully menopausal and still in pain from the damage the endo did but not very often at the levels it was at pre menopause. And I’m not allowed HRT. Endometriosis is the unwanted gift that keeps on giving!

I am extremely fortunate though in that I am able to go straight to my gynae if something isn’t right; knowing that she’s there if I need her is kind of like a safety blanket in itself.

[bluebug]

Is your cousin telling you everything about her treatment over the years? And you sure she is showing she understands what her doctors are saying to her?

Just by having 3 children she would have had ultrasounds so the fibroids could have been picked up on that depending on size and when she had the ultrasounds.

Plus I know from a couple of friends who went to Australia when they were in their early 20s some had gynaecological check ups with scans when they were out there due to their family history. (One had small fibroids.)

In other words your cousin would have had scans before and with her hysteroscopy, they were able to give a diagnosis. Plus for fibroids and adeno hysterectomy is a treatment option. It won't sort out her endo but you haven't mentioned she's had scans.

[Chrissie66 in reply to bluebug]

I don’t think I am hearing everything, but this is very new to her and I think she’s in shock. Her youngest child is 16 now; I know it can present at any age and they weren’t looking for endo when she was having baby scans but she’s always had bad periods; I don’t understand why it’s taken until perimenopause to find it.

She’s flying home for a couple of months in May, it’ll be easier to talk face to face than via FaceTime.

[bluebug in reply to Chrissie66]

Yep better talk to her face to face as it's likely she ignored or wasn't aware of stuff on her medical records.

[Mummymego]

Hi Chrissie, when I was diagnosed, mine was by a transvaginal scan. That’s all it took to find it meanwhile, I had done about 5 MRIs before that and it wasn’t seen. I also have fibroids, endo and adenomyosis. I was told I’ll have difficulty trying to conceive which happened but I’m pregnant. The extent of the invasion is more important than the diagnosis itself. That’s kinda what I find determines the symptoms . All the best to your cousin

[Chrissie66 in reply to Mummymego]

Thank you, I’ll pass your good wishes on 😊

And congratulations on your pregnancy! x