Extra Pelvic Endometriosis

[Endo555]

Has anyone had right upper abdominal pain, nausea, vomiting and bloating and it resulted in being endometriosis on the Liver or surrounding area? I had a ct scan 2 years ago and it showed a 32mm haemangioma on my liver but I've had no treatment for this. I'm aware that hormonal treatments can cause these to grow and I have been taking the pill most of my adult life and I have the mirena implant in currently to treat endometriosis. I have diagnosed stage 4 endometriosis on my bowel, bladder, kidney, ovaries, pelvis and due to have a thoracoscopy to investigate if it is growing on my diaphragm due to other symptoms; breathlessness, shoulder tip pain, neck, head and jaw pain.

Any help would be brilliant as I feel every consultant I see dismisses my symptoms. I've been taking anti sickness medication every day for the past 2 years and being told to live with it. I've no quality of life and don't know what else I can do.

TIA everyone.

[RedCat24]

Have they said your haemangioma is connected to endometriosis? I have 1 too which was found 18months ago via a upper abdominal ultrasound and was told it was nothing to worry about, I hadn't been diagnosed at this stage

[LaraBo]

Hi - I suggest exploring the side effects of the medication you are taking first, including the mirena coil. It might be just that and if that is the case, you should stay away from a complex surgery as that... On another note, have you checked your Ferritin levels? If not, I suggest a full panel Iron tests to make sure your other symptoms aren't related to severe iron deficiency or anemia. Nausea may also be caused by a dysfunctional gallbladder which can be triggered by what your eat. Lemon juice, grated ginger mixed in water on empty stomach may help. And an assessment of your digestive system is also recommended before anything else. Hope you get better soon! God bless!

[LaraBo in reply to LaraBo]

And just wanted to add, stay away from CT scans for your pelvis area if related to soft tissue and not kidney stones for which I know it cannot be avoided. CT scans use radiation, you should always opt for an MRI for such tests. CT scans are best for bone diagnosis, but MRI is best for tissue and does not use radiation.

[LaraBo in reply to LaraBo]

And, of course, forgot to mention, stay away from just diagnosis of a potential dyafragm endo. If they are going in, they should also be able to remove it. And for that, you need a team of specialised experienced surgeons.