hysterectomy for stage 4 endo?

[caseprint]

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!

Thanks!

Anna

[caseprint]

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!

Thanks

Anna x

[caseprint]

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.

Ax

[caseprint]

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