hysterectomy for stage 4 endo?

Hello all!

I had a laparoscopy for stage 4 endo last year and it has sadly not given any relief. I have tried a number of different 'pills' to try and resolve symptoms of pain, bleeding and fatigue but the whole thing seems to just keep getting worse. I am on a special diet, I do exercise when i can, I have tried alternative therapies, I am all about the 'fix what you can for yourself' attitude, but it has finally hit me that no matter what i do or try this isn't getting better and my quality of life is getting steadily worse. I am obsessed by my endo.

I've started reading about hysterectomy and it sounds like a good option for me. I don't want children of my own and would happily adopt or foster if that changed in the future. I'm only 29 so i know my surgeon will have his reservations on that alone, but I just wanted to hear from anyone who is happy to share their experience of hysterectomy and if it has helped their symptoms.

I think it will be a bit more complicated for me if i do go ahead because my bowel is still stuck to the back of my womb and they left it so as to not risk the need for colostomy.

I am seeing my specialist again next month to talk everything through as well as trying prostap but i also get the impression that prostap is a worse experience than full hysterectomy!



6 Replies

  • Hi Anna - unfortunately a hysterectomy does not cure endo. When it is talked about in relation to what you have it is not about removing the uterus but about removing the ovaries in the hope that shutting down your oestrogen production will stop endo from growing. But there are several problems at your age. You shouldn't live without oestrogen from such a young age as that can have severe other health risks such as loss of bone density with a great risk of early osteoporosis. At 29 you will barely have reached peak bone density. So you would have to take long term oestrogen replacement which can stimulate endo and have health risks of its own. Further more you have rectovaginal endo and once your uterus is gone it can readily spread forwards to your bladder and ureters. Can I check who is dealing with you because under NHS protocol you must only be treated by highly skilled surgeons in a dedicated specialist endo centre with your stage of endo. Don't mention names but is it a BSGE registered centre that operated on you or a consultant in general gynaecology? What area of the UK are you in? x

  • Hi Lindle,

    Thank you for the info! I requested to be treated in Middlesbrough as i was originally seen by a general gynae in Durham. I'm not sure if it is BSGE registered but I would 98% say that they are. They really do seem to know their stuff but at the same time all drs that i have seen will happily say they know lots and little about endo and how to treat it fully.

    I know a hysterectomy wouldn't be a cure but I feel like I have no options left to me so i was kind of pinning some hope that whilst not a cure it may be a better fit than what i am currently doing. I really have no idea what options i have left.

    I haven't wanted to try prostap before now because it seems nuts to switch off my ovaries and then have to replace some oestrogen with HRT so that is also why i thought a hysterectomy made more sense but i understand what you have said and that would obviously make me think again.

    If you have any suggestions that would be great, things are just totally hopeless right now!


    Anna x

  • There is a centre at Middlesborough so it might have been there. If so they will have done extensive investigations before abandoning surgery for your rectovaginal endo. So have you had a pelvic MRI and a rectovaginal examination which is having fingers up the vagina and bum at the same time to feel for deep endo? Have they said that your bowel has been penetrated by your endo because having it stuck to the back of your uterus is what POD endo is but it doesn't always mean you have to have a bag, or at least not long term. The worst case scenario would usually be to have a bowel resection to cut out any portion of bowel that has been penetrated and you would have a bag whilst it healed and then have it reversed. All cases are different of course and I don't know quite what is involved but in your situation I would want a second opinion before having a hysterectomy as the top specialists always work on the basis of removing disease not organs unless in really extreme sitauations. x

  • I have just looked it up and it is, so at least i'm in the right place! :)

    I have had an MRI and if they did a rectovaginal examination it hasn't been whilst i was awake. Of the many things I have had done over the years I would have remembered that!

    They haven't said that the bowel has been penetrated just that it is stuck to my uterus and POD was written down but I didn't realise that is what that meant. I wouldn't mind colostomy at all short term if it meant getting rid of more endo but they are reluctant to just do more surgery as the first one wasn't successful and I am back to square one within a year.

    I struggled all through this last decade to get a diagnosis and when I finally did 3 years ago I had hope things would improve. Prostap is what they want me to try next and they said that if I were to go in for more surgery it would likely be for a hysterectomy and that is when they would tackle the rest of the endo.

    If excising the endo is what gets rid of it (I had endometriomas on both ovaries, it was on my tubes, uterus, bladder and bowel, from what i can remember without looking at my notes) and there is still some left in this section that is joining my bowel to my uterus then will it not just keep coming back even if they do more surgery? and if they did do a hysterectomy and that isn't a 'cure' for want of a better word, then is there actually anything that can be done?

    Sorry for all the questions, there is just so much info out there and everyone's case is so unique it is hard to really understand if you are getting alll the options from the specialist, even though I can't fault them at all for their care so far, I just feel like I am pushing them to give me an answer that they can't actually give, because it doesn't exist. I have pushed and pushed to try as many things as I can for myself and also tried the options they give. They have been super patient with me not wanting to be to extreme but I really want my life back so I am now just happy to do whatever they say, maybe this isn't the best way to go tohugh.


  • Hi Anna - I think you need to find out exactly what was found and done at the lap and what the results of the MRI showed. You mention that if they do a further lap it will be to do a hysterectomy and tackle the rest of the endo so that means they will be separating your uterus from your bowel anyway and presumably tackling the bowel endo. So they would only need to remove your uterus if endo had penetrated the wall. Having said that, as you are OK with having no natural children you could lose your uterus if they could retain your ovaries. If they were left they would continue to work to provide some natural oestrogen for some time although how long cannot be predicted. But then they would still stimulate any endo that was left so a thorough excision would be needed as far as was possible. Do you know if the endometriomas were excised successfully and all the other endo such as that on your bladder and other places and it was just the uterus/bowel issue that was left unresolved? I wonder if they halted the lap because of time restraints or perhaps because they didn't have the skills to tackle your bowel.

    I do think you have options because at the end of the day the specialists are all human and there are varying degrees of expertise with some emerging as those that tackle the most complex cases and some centres do refer on to others.

    For now try and get copies of all your notes if you don't already have them to try and get a feel for exactly what has lead to the current situation. You can arrange a free viewing of your records at your GP practice which I always think is the best way as it really gives you a feel for your own history. Then you can identify what you want copies of and only pay for those. You would write to the practice manager for this. Or you could ask for copies of all documents (letters, surgical reports, results etc) relating to your endometriosis diagnosis but you might find yourself paying for irrelevant stuff.

    Unfortunately I don't know about all the centres but there a few that are known for tackling the most complex cases. I have come across a few women lately who were told at centres that the only course was a hysterectomy who went elsewhere and had full excision with retention of their reproductive organs. Can you pm me with as much info as you can get hold of and we can then consider further. x

  • I've got it all written down at my parents place. I'm headed there tomorrow so i shall get it out and send it over in a private message. thank you so much for taking the time to help me with this, i really appreciate it! X

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