Stage 4 endometriosis

Hi All

I was diagnosed with stage 4 endometriosis Sept 2014 after suffering with painful periods and pain passing urine and also not being able to conceive. I've had MR scans, CT scans, several cameras and recently had bowl camera. I am in for a bladder camera next week. In the meantime I am on the prostap injection which is only temporary. The bowl surgeon has said due to my case being so servere they want 2nd opinions from specialists in Liverpool. Surgery could lead to me having 2 bags 😢 I am so confused and wondering what are my options, do I go with surgery, is they anything different to prostap? Could anyone discuss there advice with me please? Thank you.

11 Replies

  • I had diagnosis of severe endo bowel and bladder dec 2015 and ended up having radical hysterectomy in feb 2015 the pain was unbearable endo was on bowel and bladder but both were excised and I had adhesions which were also fixed. I am at the moment pain free 4 wks post op however I am 43 so hysterectomy was not an issue for me as I have children. Are they certain your bowel and bladder cannot be saved? My op was in Liverpool too. Good luck with everything xx

  • Hi thank you for replying. They have said the surgery is so big it could cause problems and more higher than not to lose a big portion of my bladder and bowl. Next week is to check it's not inside my bladder. If it's inside of op said will lose part of bladder which means it's a lot smaller and could cause me problems. My mind is everywhere at the minute as I just don't know what's going to be best. I'm only 26 and have said the medication is temp. I have been thinking of suggesting a hysterectomy but coz I don't have children and my age I don't think they want to. I can't have children with what I have anyway. The big thing is I have to decide. And I just really don't know 😟 xx

  • My bladder port of Douglas and pelvis were covered externally with endo my bowel was speckled with it externally I did not have any pain with bladder but was constipated I didn't have heavy periods either which is probably how it got severe as my symptoms were just side pain tiredness and dizzy spells. It's a bloody awful disease I hadn't even heard of it till I got it. We don't have a support group in the north west either :-( I'm thinking of starting one once im fully better. Let me know how you get on with everything x

  • My periods aren't either it's just the pain through my cycle was bed bound. I'm constantly tired and have been for years. They think it's been there a long time but my pill was controlling it. I came off the pill and after 9 months was horrific pain. Then to be diagnosed last September after key hole. It's so draining and emotionally exhausting. No we don't hun your right. Where abouts are you? I've needed to speak to people who are suffering with stage 4 and found this site myself. The hospital don't recommend to speak to anyone. That sounds good to set it up. xx

  • I am only allerton we could grab a coffee once I'm out and about and start our support group :-)

  • Yes hun that's sounds great. Bob me an inbox once your fully recovered. Will look forward to it ☺xx

  • Hi - it's vital with your stage of endo that you are operated on by top specialists which thankfully your doctors have recognised. Have a look at my post on how to find a specialist centre - the Liverpool one is such a place. The hospital can refer you or your GP but be sure you are actually sent there and they are not just asking for advice.

    The problem with hysterectomy is that you would have to have both ovaries out as it is oestrogen that drives endo but at your age you need oestrogen for other health benefits. The injections induces the same state which is why you can only take it temporarily. For you at the moment the essential priority for the best possible care is to be transferred to an endo centre that has the expertise to do the absolute best for you. x

  • Thank you for your reply. The surgeons have MDT meeting in April on my case. It's going to be recommended it's refered to Liverpool to see what they say as specialists there have more experience in my case. It may be Liverpool who do the op if that's what I go for. It's just all so much to take in and even more so at my age. It's shame we don't have any groups in the north west to talk to people going through the same xx

  • Hi - I'm not talking about a hysterectomy op but a lap by the specialists regarding your endo/bowel/bladder problems that you really wouldn't have much choice over.

  • lindie knows her stuff I'm too new at this to advise anyone. I do think it would be nice to chat with endo sufferers at all stages and pre and post op so will definitely arrange that cuppa once I'm out and about x

  • Brilliant. Take care and speak soon xx

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