No lap what now : Saw gynae recently who is... - Endometriosis UK

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No lap what now

Miracle77 profile image
6 Replies

Saw gynae recently who is sure going by the endometrioma's I have endo and she suspects there is quite a bit of it on the right side. I was listed for lap and excision surgery to take place in January. I have other health problems so she had to liaise with the anaesthetist regards how I should be managed during op. I was then told by her secretary she had written to me with the plan and was happy. I've learned today I have been removed from the waiting list and they are not going to do lap. I had been emotionally fragile due to the pain, bleeding and lack of sleep but was brighter as I could see a light. Now today I'm all over the place again and tearful as Im scared they will leave the endo and my pain will continue. I yet again spent the weekend in bed with the hot water bottle which is not what I needed the weekend before xmas. Can I take the matter further?

Thanks

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Miracle77 profile image
Miracle77
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Mabes profile image
Mabes

I'm so sorry. How did you learn you are off the list and what were the reasons given for completely removing you?

You can complain to PALS and they will investigate.

If the reason is that the operation would be too risky due to your other health problems then I think it would be a case of risk outweighing benefit. In that case I'd expect an alternative plan of treatment to manage your pain and symptoms. Even if that is the case you could ask for a second opinion - possibly this is something you'd have to liaise with your GP about, or even whoever manages your other health conditions (e.g. you could ask your other consultant advice over whether it would be safer to manage symptoms rather than risk an operation etc).

shanevril profile image
shanevril

I think not all surgery is useful in life having endometriosis ......I went for lap surgery last April 2011 ,,there are time for the last 3years I been suffering so much pain during period,heavy bleeding more than a month last September_Nov 2014....I been stop taking hormonal pills cause it never been help for me ...I have allergic reaction so I keep stop without doctor advice ..I'm sick of there advice as well ..they keep saying . No hope for this and for that so I did not try .whatever they old me .the only help me jus prayer and some herbal drink ..........and I gather information online

Miracle77 profile image
Miracle77

Mabes my other docs are ok with the op as long as certain things are in place which they were and my team were happy to be involved. They have told the gynae I'm fit for op which makes the decision so much more annoying. Need to wait in official letter before I can pursue it. What would they do if I presented acutely overnight and needed op...surely it's better to do electively with right care in place!

Miracle77 profile image
Miracle77

I'm well confused I've received formal confirmation that I have been removed from waiting list or lap. There is a ps on the letter that says that the op will go ahead but that a letter from gynae will follow...now I'm well an truly confused. Thoughts ?

Miracle77 profile image
Miracle77

Received the letter with the plan from gynae today. As I have other surgery planned for next week under spinal the other Dr will do the hysteroscopy, biopsy and Mirena insertion at same time. They will not do laparoscopy or excision surgery or removal of endometriomas as I apparently need a general anaesthetic for that. I'm well confused as I had a laparotomy in August under spinal and a laparoscopy is less invasive. Trying to decide how to proceed. I was looking forward to get some peace from the pain!

Miracle77 profile image
Miracle77

Seeing gynae to discuss lap and treatment options tomorrow as I appealed the decision not to proceed. Please everyone cross their fingers I can overturn the decision and still have my lap. Pain is getting worse and is driving me crazy.

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