appointment through

i have got my appointment through to see the urologist,so he can talk me through tha part he will do when i have the hysterectomy,and posible part removal of my bladder.i am still annoyed that they are saying they think it is endeometriois only by looking at the mri images.and that hysterectomy is the only option,all i have is a 3.5 cm x 2.5 cm lump in the wall between womb and bladder.and bad pain under my ribs and pain on urination.i dont know what questions to ask the consultant when i go,any ideas please i know this is quite a major op at 39 to have and i am scared,

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  • A hysterectomy is not the only answer and may not totally stop your pain. Seek a second opinion! Ask why they are not offering you any other treatments. What evidence do they have for their reasons?

    Have you got children? If you have I can see why they are pushing you for a hysterectomy, getting pregnant or a hysterectomy are usually their favourite solutions (wherever they are suitable or not). Tell them that you want the endo confirmed first and then seek an endo specialist. You have the right to take things one step at a time. Don’t let them write you off with an aggressive and permanent ‘solution’ just because of your age.

    Make sure that you take someone with you, who knows what you want. I am useless in consultations on my own. Write a list of questions you want answers to. Get the person who comes with you to write down what they say. Read up on your condition/ symptoms so you are more confident to ask questions and respond to answers. Do not let someone with authority intimidate you and impose such radical treatment without your total confidence that it is the right path for you.

    I can completely understand that you are scared. The women on this site will support you on your journey, you are not alone!

  • hi yes i have 2 children,i am not convinced it is endeometriosis,when i asked my consultant what if it is not endeometriosis he just said what else do you think it could be.he said would biopsy the lump once they get it out,i have lost a stone in weight since xmas but they arent concerned.i just feel like they are just saying endeometriosis as the pain when i urinate do get worse when my period ends.

    he said i have to take tablets b4 the op to start me in the menop\ause but not sure how long before i have to take them or what they are called,how long is hysterectomy waiting list in norfolk as i 1st got told hysterectomy only option on 2nd april he said he would refer me to urologist and hysterectomy,but not sure if they book hysterectomy before or after the urologist,.i am desperate for answers as have no one except this website to ask.

  • Hi sonyap, Im from Norfolk and im waiting for my hysterectomy too at the norwich and norfolk hospital. I was told three weeks ago and that the waiting list is around twelve to eighteen weeks.

  • I would also say definitely seek a second opinion.

    I learnt the lesson that you sometimes get offered whatever is the specialism of your particular surgeon - they should refer you onto someone with different skills but they dont always if you are happy with what they offer - they probably genuinely believe what they are offering is the best - but the best is what feels right for you. Not for them. Try and see an endo specialist surgeon rather than a general gynae, unless endo really is there specialism.

    Hysterectomy in itself only helps provide relief from adenomyosis (sure I have spelt that wrong) which is where endo is in the muscles of the uterus. Still leaves it elsewhere if you have it in other areas too.

    I was told by my first consultant that I was a "mess" and hysterectomy was my best option . . . . (bladder, uterus, ovaries, diaphragm, on bowel, recto/vaginal, sacral ligaments). I researched and found that I could have radical excision surgery.

    Radical excision is where the whole lining of your pelvic cavity is excised (appropriate for stage 4 endo) It removes all seen and unseen endo and heals more cleanly with less chance of adhesions forming than with patch treatment. All done keyhole. Overall I have been more than thrilled with the outcome, avoided hysterectomy and oophrectomy, and have been endo pain free since surgery (16 months now).

    The big downside is that very few surgeons are specialised enough to carry out this lengthy surgery. But it is available and can be an alternative to hysterectomy and oophrectomy if that does not suit your desired outcome.

    Take your time to decide too what feels right and are ready to go forward.

    All best wishes

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