Stage 4 endometriosis

Hi All

I have finally had my last lot of investigations. They have said my endometriosis isn't within the bowl or bladder it's covering the walls on the outside. It's affecting a lot of organs and the surgery would be open and major with a lot of high risks. The surgeon yesterday recommends I stay on the prostap for as long as I can or meds which cures the pain due to my age he doesn't really want to operate as could leave me with not 1 bag but 2 bags. My minds allover and don't really know what to think or do. Does anyone have any advice to help please?

22 Replies

  • Oh dear😢 I am so sorry to read this. I can't imagine how you must feel, I'm afraid I can't say anything useful but had to reply to say good luck x

  • Thank you

  • Sorry to hear how bad you're feeling. I'm in a similar situation, but I'm waiting for another lap to see how bad my condition is at present. Have you explored the alternative to not having the op long term? I've been warned about the risks of separating my bowel, uterus and ovary. But my feeling is that the endometriosis could do irreparable damage and result in needing a bag at some point in the future. It's just my view, but it may be worth asking the consultant what the long term view is and what other treatment could you explore. Good luck x

  • Hello honey,

    Sorry you're having such a bad time of it :( I've got stage 4 endo too (&a whole other list of problems) it's on the outside of my bladder, outside & inside my bowel, all over my ovaries & uterus, rectum, pouch of douglas, & awaiting investigations to see if it has penetrated into my bladder & spread to my kidneys, as well as having PCOS & Adenmyosis & adhesions. Alot of the time I find that regular routines with things like pain meds really helps- dont wait until the pain is bad. Avoid things like NSAIDS (ibuprofen, naproxen ect) like the plague as this can make it worse, & avoid Gabapentin as even though it can help with nerve pain it can cause some real problems. Tiger balm red is good- especially for back & tummy pain, hot water bottles, heat bags, hot baths, plenty of rest & avoiding "irritating" foods (such as pork & spicy stuff) helps. It also might be worth getting a second opinion- every surgeon is different & has different views on treatment. Hope this helps x

  • Thank you for your reply. The bowl specialist I am under has suggested a 2nd opinion. I have my next meeting in April so will see what they have discussed. I'm not sure what long term meds are avaialble just yet but will hopefully know soon. It's an awful disease as always tired and such bad pain during periods to the point I'm carrying my pill on so I don't have one. xx

  • No problem hun :) yeah it does take a long time to find the right meds- alot of the time they might also refer you to pain management where they can give you help with managing your meds as well as other options to help the pain. It's a horrible thing to have- I was poorly before I got diagnosed with endo & it just wipes me out most of the time :/ hope the bowel specialist has some answers for you xx

  • They have mentioned medical management a few times but coz I have been so interested in surgery this is why I've had all these extra examinations done. In between all this it's also preventing me having children. It's just an awful thing all round to go through. How old are you hun? I've been going to all these appointments and no one around my age either. It's so emotionally draining xx

  • I'm 20 hun :) u? lol I know- half of the time I'll be waiting for my appointment & I am the only person my age there & I always get told "oh we don't usually see people as young as you here!". It's stopping me having kids too :( me & my man have been trying since I was 18 & nothing, & they've told me I'm too young to be sent for fertility tests (one so-called "friend" even had the cheek to turn around with "well, I think with all of your problems that you couldn't look after a child anyway & you'd have it taken off you!") Its just so frustrating. I think most of my life consists of hospital appointments, trips to a&e when things get really bad & endless medication xxx

  • I'm 26 hun. It was only when I came off the pill I ended in ironic pain and was just being sent away with painkiller after painkiller to me then saying the my GP I think I've got endometriosis as my systems are all there. Finally I had key hole and was stage 4 😟 . They have asked me about IVF and they will support me but with all this now I don't think could go through that on top too. Emotionally drained now and always tired. Are you in the north west hun? xx

  • I was on the pill from age 12 to 17 & it didnt help at all :/ what pain meds are u on atm hun? Lol I've been given a massive cocktail of stuff to help with the pain but its getting to the stage now where Im sick of being in constant pain. I dont blame you for not being to go through ivf- on top of everything else you probably are stressed enough as it is. No I live in Dorset hun but I go up north alot because I'm from merseyside & got family there :) where abouts are u? Xx

  • Hi hun I'm on prostap injection. Apparantly I can only have this for 12 months. It has stopped the pain but I also carry my pill over a lot to stop me having periods. The thought of having one makes me panic. I'm salford hun xx

  • I've heard alot about prostap- I've got friends who have it. Its a shame you can only have it for 12 months- especially when it seems to stop the pain. When I had the pill they put me on Marvelon but it did absolutely nothing to help. They offered me a mirena coil to be fitted during my lap but I decided against it. I know what you mean about the thought of periods makes you panic- alot of the time when I get one I can barely move with the pain & they are so irregular that I never know when it will happen :/

    As in Salford Manchester? I have family in the Droylsden area :) xx

  • Yes hun. I also have family in Droylsden top ☺ I am back in April for meeting with endo specialist so will see what's suggested. I am defiantly wanting 2nd opinions from endo specialists in Liverpool. It's all so confusing as I don't seem to have many options to take xx

  • :D haha small world we live in! Hopefully you'll get some answers from the specialist in April- it's tough dealing with making decisions, especially when the options are slim :( endo is one of those problems that no treatment option is guaranteed to help & its frustrating :( I do have a blog that might be of some interest to you:

    there's alot of stuff on there about how I've dealt with endo & some of the ways I've learned to help me cope which hopefully might help you too :) xx

  • Diagnosis can only be properly done through laparoscopy. Get 2nd opinion from excision surgeon with good reputation. My general gynae consultant told me similar, ends up keyhole excision surgery was able to remove a lot of endo - only 9 weeks ago so still early days. Sorry if you know this already and I'm just stating obvious x

  • Thanks for your reply. Because of how bad mine is and the risks are high if and when I go for surgery they have said will have to be open. I still want 2nd opinion from Liverpool as that's what my bowl specialist has suggested. Something to the level I have we need the best advice and specialists. xx

  • Hi there I'm sorry to hear about your situation and like the couple of replies you have had I'm going through the same thing. I feel your anxiety about open surgery because I will have to make the same decisions after my 3rd laparoscopy in 2 weeks time. I recommend the same as Dollypop1994 for pain relief and ask for a second opinion. Good luck Hun let me know how you get on. Julie x

  • Hi hun thanks for your reply. I've had lap and that's when they said I was stage 4. Had MR scans and all types of cameras. I'm at the end of the investigations and decisions now need to be made I'm back in April to see what's been decided. My bowl specialist has said he wants 2nd opinion by endo specialists at Liverpool. It's awful as not much we can do as it's all out of our control xx

  • Hello, I am afraid I'm in the same boat. Stage 4 endo attached to and inside multiple organs as well as complications with ovaries and tubes :0( I'm on Zoladex and add back therapy at the mo in preparation for my operation (full hysterectomy ) which I have been told is high risk robotic assisted radical surgery!!?? Not 100% sure what this means for me but have a consultant appointment at the beginning of April to find everything out. Very anxious about the surgery and recovery times and like you said about the damage to my bowl and bladder. However, I am hoping this may be the answer to the debilitating pain. I obviously will be armed with more information in April but I am already leaning towards having it done as it may be successful and that is sometimes I can be positive about.

    Do you have another consultants appointment coming up to discuss your options? Did they discuss the likelihood of bad damage to your organs?

    It would be great to hear from people who have been in our situation and have had the surgery and how they are now.

    Please let me know what you decide and how everything goes as you move forward.


  • With me only being 26 they don't want to do that in my case. If the meds can prevent the pain the surgeons want me to carry on like that for a lot longer. As for the surgery it would be open and have said could cause damage to bowl and bladder and and mean bags for the future. Again at 26 I'm too young for that. If having the hysterectomy this will only remove from certain areas? I am back in April for further discussions and to see what they suggest. I do still want a 2nd opinion from endo specialists. It's difficult for us as not knowing anyone suffering the same you can talk face to face with. The difficult thing is its only us that can decide which route we want to take. I hope it all goes ok for you. I know exactly what your going through xx

  • Oh I am so sorry, and that you are so young too. I am 34 so still feel too young for the menopause but am very blessed to have 3 year old twin girls through IVF. I think the worry of having bags has troubled me a lot too. :0(

    To make a more informed decision I think you are right to wait for the next appointment and to get a second opinion.

    Like I said, keep me updated. I hope you find an outcome that will make you more comfortable in the end

    Emma x

  • Thank you Emma x

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