Recurrent diaphragmatic endometriosis - Endometriosis UK

Endometriosis UK

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Recurrent diaphragmatic endometriosis

Endomy
Endomy

Dear ladies,

Would you please help me?

I am known endometriosis stage 4. I have diaphragmatic endometriosis and had previous lung collapse 3 years ago. I had laparoscopy as well 3 years ago and they removed large chocolate cyst and my left ovary, but never dealt with my diaphragm. Since then I have been taking Gnrh anologue (Decapeptyl).

I got a flare up 9 weeks ago . Severe pain and abdominal swelling. They initially did CT and Us and found large amounts of blood or ascitis in my abdomen. I got admitted to the hospital 10 days ago and they drained huge amounts of haemorrhage from my abdomen mostly 8-9 litres. There is also a mass in my pelvis mostly endometriosis cyst again near my Urinary bladder. Also some endometriosis deposits around my spleen.

All through this I have been reviewed by gynaecologist oncologist, who is still suspecting malignancy despite of the long history of endometriosis and despite of decreasing cancer markers. The consultant is trying to push my to a laparotomy not a laparoscopy and with possibility of removing my remaining ovary as well. I do not have kids. I am 37 years. I do live by myself and I am scared from going for a laparotomy especially for a benign disease like endometriosis. I asked to be reviewed by endometriosis specialist who did not want to interfere in my case!!!! However they mentioned dealing with similar patients with other surgeons (upper GI surgeons and thoracic team).

I am really devastated. I think I need an endo surgeon who is keen on laparoscopy, not laparotomy and who is keen on leaving me my only and remaining ovary.

Anyone had a a close experience? Any advice? Have anyone refused a laparotomy for endometriosis? Have anyone been treated by oncology team instead of endometriosis center??!

Anyone with history of endometriosis that is close to the spleen?!!

Any experience about going for this privately?! Any idea about possible costs?!

Thank you so much

5 Replies
oldestnewest

Gosh - you are going through it. When you say that you asked to be reviewed by an endo specialist who didn't want to interfere was this a BSGE endo centre specialist?

Endomy
Endomy in reply to Lindle

The endometriosis consultant in the same hospital came and told me I think you should continue treatment with your current consultant. I even asked him simply to be involved in my surgery even if it is laparotomy. He answered he will see and will try to do his best but he won’t promise to be there. I felt I was abandoned. No one offered to liaise with appropriate team and everyone do not want to be responsible!!

And where in the UK are you?

Endomy
Endomy in reply to Lindle

South west . Coastal center(P)

You're entitled to be seen by a BSGE gynaecologist at a centre of your choice. Your GP can refer you if your current gynae won't.

Please get a second opinion from an expert specialist ❤️

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