Decisions decisions! Hysterectomy at local hosp or excision at specialist centre with a long journey, don't know what to do for the best

[Eggcustard]

Hi everyone, I could really do with some help today as I try to decide what to do next. I have endo and chronic pelvic pain.i am on prostap and have had 3 laps and 2 dermoid cysts removed.

My current gynae wants to do a hysterectomy.

I tried to see an endo specialist, paid privately and was supposed to be put onto his nhs surgical list for excision but he has gone off long term sick.

I also need pain management for chronic pelvic pain which seems to be unrelated to endo and I have been told it is neuropathic (nerve) pain. My current pain management specialist has only had 3 patients with chronic pelvic pain including me, so not experienced at all.

I am deciding whether to stick with the local hosp which doesn't have what I need really, or go to a specialist centre where they have what I need but the journey home post op will be horrible.

My current gynae says I don't need excision as there was only minimal endo which has already been "dealt with" as it was lasered last time. I have read enough to know this just isn't right, excision is the best way to deal with endo. When I said to him that it has been lasered so it will just come back he said that it will come back if I have excision too so I should just have the hysterectomy. I am beginning to doubt my own knowledge because i know excision is better.

I am also on prostap and was when my last lap was done so surely that would have shrunk it all anyway!

Totally confused and any advice appreciated please. I have read that my current gynae is a cancer specialist so he is bound to say hysterectomy! Some of my endo is on my womb so I may need the hysterectomy anyway.

I know that no one can make my mind up for me! But am I right in thinking that my current specialist is just wrong in what he is saying?

Thanks for reading, I can't believe that we have to research and decide these things ourselves because most Gynaes aren't trained in endo, you would think though that they would have some basic knowledge, reading any endo book will tell you excision is best! also can't believe there is no-one locally that I can see.

I am very lucky to have daughter who has just gone 6 and so I have to consider who will look after her if I am away having surgery and won't be able to have any op done until September now because of school hols!

Rant over, sorry it's such a long post and thanks for listening! Xx

[Chiligirl]

Only you can make this decision. In my experience the general gynae (who I saw first) did not give me the best options, only when I went to the specialist endo gynae was I given a full picture and offered the most up to date solutions, and spoken to by someone who really is on top of his chosen area.

Like you, I researched and researched and researched, and found that I could find no better treatment than what was being suggested by the specialist endo gynae. And looking back, considering what he did and told me, I'm amazed the general gynae puts endometriosis on his list of interests! From reading on this forum it seems that many of us are dealt with by people who are not as well informed as we often are!

So, do what you are already doing - arm yourself with the best possible information. And then clearly think about how the option you choose might affect you going forward... Interestingly, you do say in your post "I am deciding whether to stick with the local hosp which doesn't have what I need"... Which makes me think you've already made your decision and you just need a bit of confidence.

I don't know your exact condition, but if my situ helps - I was diagnosed with stage 4 endo and had surgery 6 weeks ago to excise it. It was never definite that he was going to be able to get it all but in the end he was happy to report he has removed 'all visible endo'. It was all over my uterus... everything then stuck to my uterus and vaginal wall including bowl (I had that lovely recto-vaginal one!) and ovaries (2 big cysts too), even the ureters (connecting kidneys to bladder). So I had extensive excision and have felt rough for weeks but now really feeling better. No one can say it has gone for good, but excision, as you know, gives me the best chance of it not returning.

So I wish you the very best of luck, strength to make the right decision for you and hugs for the times when you need them!

xx

[Eggcustard in reply to Chiligirl]

Thanks so much for the reply, I could do with the hugs! I think for my own price of mind I will go to the specialist centre and see what their opinion is before having anything else done. Thanks again for your input x

[wp22]

I would most definately go for excision. There is no reason for a hysterectomy other that cancer. This is fact - hysterectomy is NOT a cure and your gynea SHOULD KNOW this!!! A hyster can cause allsorts of problems later on in life and if you have endo elsewhere other than on uterus, you have endo elsewhere, hyster or not! I would look around for an excision surgeon and I can understand the travelling after op would not be at all pleasant but out of choice I know what I would do and it wouldn't be to choose a hyster just because it is easy for the surgeon. And for him to say "just have a hyster" does he realise what he is actually saying to women? Or just have your ovaries out is exactly the same if we were to say "O JUST have your balls cut off. It would be taken o so seriously then. Don't let him talk you into it, do what is best for you even if you have to travel or stay somewhere overnight. The hospital may keep you in anyhow having excision because I did after my excision last August. Good luck X

[Eggcustard in reply to wp22]

Hi, I don't think he meant "just" have a hysterectomy, sorry if I made it sound that way, I think what he meant was it could come back whether I have excision or not. I am going to get another opinion from an endo specialist before I have anything else done. I know from my own research a hysterectomy isn't a cure and excision is best, it's just after 3 laps already and 2 years of chronic pain you get desperate. Thanks for the reply, it has reassured me there may be another way and I really appreciate that x

[Jillanovitch]

Awww what a decision, I had the hysterectomy full...ovaries etc at a later date. The endo did come back. Your decision I think should be yours, will you want more children etc? Also the pill etc has been known to make endo shrink, but NOT go away. All I'm saying is go with what's best for you. Good luck and a huge hug, were all in the same boat to much pain and no information, help or guidance ;0) xxx

[jen1982]

I can only recommend the endo specialist, I've had excision and my endo did come back unfortunately after a year. BUT my specialist said you normally get around 5 or more years free of endo after excision and that it is much more effective than laser. I would say don't do anything so drastic until you've seen the specialist and got their advice. In my opinion they were so much more helpful than the gynaes xxx