Hi - I has severe stage 4 endo and was told by my first consultant that a hysterectomy was my best hope. I did research and found out that it probably was not going to be. A hysterectomy would have eased my pain if I had adenomyosis (endo actually inthe uterine muscle). Unfortunately a doctor cannot be certain but can only suspect as this is not confirmed until after the hysterectomy and a biopsy performed.
Like you, I had queried the logic of a hysterectomy solving my endo if I had it extensively elsewhere. What is the point in removing your own natural hormones on the basis that stopping estrogen will stop endo - particularly if you are going to need HRT! Plus estrogen is made and stored by the fat cells in the body so the larger you are, the more estrogen you are likely to produce (so I understand) plus we get it from food sources and from plastics a pthlates in packaging etc. The more forward thinking now is that lots of female problems (fybroids, migrane headaches, post-natal depression, endo, female cancers are contributed to by not necessarily high estrogen but by estrogen dominance. This is where there is relatively low levels of progesterone compared to estrogen - so you could have low estrogen but if progesterone was low, you coud still have estrogen dominance that over time encourages many of these things. It all made sense to me as I had a certvical erosion when I was young, I had a pituitary prolactimona (hormone related brain tumour) and then finally severe endo. All of which were indicated by low progesterone rather than needing estrogen.
Apparently we have progesterone receptors throughout our bodies and they are strongest in different places in different people, hence this hormone imbalance created different symptoms in different people but all with the same cause. I am not a medical person so I have no idea whether this is the case but it made perfect sense to me and explained my own journey.
I did not go down the hysterectomy rand HRT route but found a different consultant who offered to remove my endo rather than remove organs. I had total radical excision surgery. That was over 2 years ago and I have been absolutely endo pain free and functioning normally since. My surgeon had said he thought i probably did have adenomyosis as well as a bulky womb was indicated but I decided to have the radical excision first and then go back again for a hysterectomy if I found that I was still in pain after removal of the rest of the endo.
I also had it on my bowel which was completely out of place, hence the 'IBS' symptoms. But I had this shaved off rather than undergo a bowel re-section. My surgeon said that a bowel resection was only necessary when it had actually penetrated the bowel wall. He said in his extensive experience, this was a fairly rare occurrence and was generally on the outside of the bowel sticking everything together.
If you do need a hysterectomy for adenomyosis, there is no need to lose your ovaries at the same time unless something nasty like cancer is indicated. An endo surgeon should be able to save them for you and remove the endo. The remaining endo elsewhere should be excised otherwise you will still have endo which could be aggrevated by HRT, particularly if estrogen. There are 3 types of estrogen and I think it is only one that is implicated so I would imagine that HRT excludes this aspect of estrogen. I don't know.
If yo are not immediately comfortable with the systerectomy route, take your time and ask for a referred to an endo surgeon consultant for a second opinion.
My surgeon has unfortunately gone private now but there are other centres for excellent for endo.
I felt like you did, quite traumatised with the choices I was being given but I did feel at peace with having the endo removed rather than anything else and I did not want to take hormonal drugs as I tend to react badly to drugs and such like.
All very best wishes to you.