Deep infiltrating endometriosis

[Lotti2024]

Newly diagnosed at 38 (been searching for the reason for my symptoms since 17. How many of the below could be related to endo? -Heavy periods

-months without periods

- bleeding and pain during ovulation

- blood clots

- severe pain in and out of periods

- mood swings

- ovulation and period related migraines

- weight issues

- heart paltlpatation

- extreme tiredness at time

- anxiety and depressions

- pain in my back

- ibs symptoms

- dizziness when standing

I am diagnosed with deeply infiltrating endometriosis via letter and this is the only information the hospital have given me with the note I am reffered to the endemetriosis team.

Does anyone have any info on what this means.

I kind of want good news stories and practic information please.

I have health anxiety and I'm already imagining the worst possible cases.

Will they be willing to do histero

[Lily1986]

Hello. I’m so sorry you’ve had to wait so so long for a diagnosis, I thought my 15 years of being fobbed off was bad but 21 years is terrible.

Anyway, Im 38 and also have very severe deep infiltrating Endo and adeno and I can confirm I suffer with all those symptoms.

I haven’t had a period since January (apparently due to remaining ovary failing) and my endo has progressed significantly.

It may also be worth having your upper abdomen and diaphragm investigated too as thoracic endo isn’t that rare within the very severe endo community. I only say this as I’ve only just been diagnosed with that after 25 years of having heart palpitations and chest pain when trying to exercise (which is virtually impossible nowadays).

Best wishes to you, please feel free to message me if you need to ask anything at all ❤️ I really help you get the care and treatment you deserve.

[Marcia71]

deep infiltrating endo means it has gone into the structures and organs themselves and needs treating by the multi disciplinary team at the endo centre. These are the bsge centres and that’s what you’ve been referred to. Unfortunately they all have long waits but it is worth checking where youve been referred and check you have actually been referred on.

The team at the centres will give you the best outcome. If they diagnose adenomyosis too then a hysterectomy is more likely to be recommended to help the heavy bleeding. But a hyster won’t help endo so that must be removed fully at the same time if that is the surgery you end up having.