Endometriosis UK

Severe Endometriosis

Hello. Has anyone been diagnosed with severe widespread endometriosis? I had a laparoscopy yesterday with an ablation but diagnosis was severe spread to other organs and further treatment needs to be discussed on results of biopsy. What treatment is this likely to be? I know I should wait for my appointment and not speculate but just would like a little advice. Thank you

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I went in for my first lap in january last year and was told all disease would be lasered out only to come round from the anaesthetic to be told that they hadn't treated any of it because it was so severe and that I needed a hysterectomy. TBH it wasn't as much of a surprise to me as it was to my consultant. I was referred on to a bsge centre in London for more specialised surgery (excision, where the lesions are cut out instead of being lasered). It has taken a while as I needed 2 further surgeries but I am now pain free and doing well, so there is hope. Sadly with severe disease it is just a bumpier road. I know it's difficult, but try not to stress too much. If you have a sympathetic nurse or GP at your surgery that you can talk to, that might help. x.

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Thank you for your very kind advice, much needed at this difficult time.

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Hi. How are you feeling after your lap ? I have deep infiltrated endometriosis and a frozen pelvis and I understand you want to know what they plan. Are you being given anything till you next see the specialist? I had my operation in may and have had prostap which has been amazing till the last few days when niggles of discomfort are creeping back, I'm seeing the specialist on Monday so hopefully he'll be a man with a plan! I think generally they try to restrict the endometriosis growth by hormone medication but hopefully I'll have a better idea on Monday. Have you been trying to get diagnosed for a while? Xx

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Hi. Thank you for your advice. I hope you get sorted on Monday and have a plan forward. Had my Lap yesterday and hysteroscopy with 2nd ablation. They found severe spreading of endometriosis on internal organs and biopsy taken. Consultant says need to discuss results and treatment plan as soon as, so just waiting on the next step forward. I am just on Ibuprofen and paracetamol. I was diagnosed 3 years ago when I was rushed into hospital with severe pain and blood infection. Hospital stay 3 days with intravenous antibiotics. Had a lap at the time where endometriosis was diagnosed. However last 3 years I have been treated for heavy period hence the ablations and not so much for the endometriosis which has now become severe from their findings yesterday.

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