Stage 4 endo and consultant has said i need both tubes ovaries uterus and cervix out :-((( hellp

I just came in from work to a letter from appt outlining what hed said, and my heads even more battered.. i dont understand really all of letter , iv a 6cm cyst on left ovary with trace of ffree fluid(?) uterus is anteverted and scarring on anterior wall and possible adherent to the posterior anterior wall.. and 2 cm simple cyst on right ovary and free fluid.. have significant adhesions because iv had 2 c sections due my first child being small. says best option would be to have it all out , call me stupid but is that a hystarectomy?? also at same time he wants to do a pelvic clearance and adhesiolysis.. as iv left ovary was palapble and fixed to left pelvic side wall.. feel so sad appt on monday.. feel sick to tummy.. im worried he wont spend time talking me through stuff as i just rushed me through appt last time and now reading it all i obviously missed stuff he said at time because was like time was going slow but he was talking fast.. and i couldnt hear him.. could anyone please tell me.. im worried as iv heard having ovaries out at early age isnt good for bones etc i wnat no more kids cos it be too dangerous.. and im 40. but i do know i need the cyst out as my ca 125 blood test is risingfrom 48 to 158?? but why cant he just take cysts out and leave rest is it dangerous to have endo left ?? please dotn think im silly just like to know.. can it cause anything more if left.. i do know iv suffered from looking like im pregnant everytime of month and pain in between is around 5 outta 10 but liveable.. whats the down sides of having it all out?? will i not be able to do thingslike keep fit in future, will i weight gain puffyetc please dont take offence just iv no idea and no one to ask and he wants a answer on monday as to what i want to do???.. sorry gals please help i know im going on

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  • Please do not panic- they cannot take all of it out without your permission to do so unless say for example you have cancer, which you don't.

    I would suggest that you ask for a second opinion - and get that second opinion from an experienced endo specialist. Even if you ask for your medical notes and send copies to one or tow of the accredited endo centres begging them to take a look and provide you and your current surgeon with an expert 2nd opinion.

    It is foolhardy to have a hysterectomy and lose both ovaries when there is no medical need to do so. You should be aiming to keep one of them at pretty much all costs if it is still working- otherwise you will end up on HRT for years and years.

    IF a lot of the uterus is damaged with endo on the outside of it (or you have adenomyosis inside the muscles of the uterus) then losing that will improve things.

    Tubes if you are not intending to have any children in your later years can also be forfeited without causing much of an upheaval.

    But to lose both ovaries is a big deal because they are so important, not just for producing eggs- but also because they are little hormone factories and they do plenty of other good things to the rest of the body. A good surgeon will endeavour to rescue one if not both ovaries- detach them from adhesions and whatever else they might be stuck to, and any cysts and leave them in you in a working state.

    I had issues with both of mine- and my surgeon took the angry one out - but did do his level best to detangle and preserve the remaining one. It is still there and working.

    I certainly don't miss the missing bits of me at all, but i am glad i do not need to be on HRT every day.

    The only way to be rid of endo is to have it physically removed, and if it is anywhere else other than the outside of the uterus then a hysterectomy is not enough.

    You need a surgeon to work on the endo that is there wherever it may be.

    Losing all your plumbing is not the solution for endo in most cases.

    You should firstly write back and outline your concerns and ask the surgeon how he can justify removing everything including both ovaries at your age, when they are not diseased. They might be stuck with adhesions and may even be attached to cysts but that is not enough of a reason to lose both of them at all.

    You could also state that, you are wanting to solicit a second opinion and ask would he refer you to an accredited endo centre as per NHS guidelines, to get this 2nd opinion, even if in the end you do return to Surgeon No.1 for the op. (though I wouldn't be too happy with him right now if it was me in your shoes either)

    The NHS guidelines for endo are newly effective as per October this year

    england.nhs.uk/wp-content/u...

    and 2.1 states that "retaining pelvic structures unless there is an objective reason to remove them" is one of the main aims.

    You have to keep a level head and crack on with your letter back to him. Be brave and write asking questions, demanding explanations, also use quotes from the NHS guidelines and cite that as a source. you can even include the website link..just incase the Doc hasn't yet had time to read it.

    If you do get an appointment through for the surgery but the issues are not yet settled then you will have to phone the hosp and explain that you are seeking a second opinion and may have to postpone surgery till a later date so allow time for that. They will I am sure be more than happy to put your op back a few days or weeks as it will mean someone else can take your appointed time - so it won't be wasted.

    Best of luck in this. No wonder you are upset- I would be too at such a letter.

  • Thanks impatient, yes im a worrier, all because of a\lot of things..work n time of and weather windering which options to do..you words were very kind and reasuring words, but your right iv this nagin feeling, saying yea iv another ovary with a litle cyst on but it says its a simple cyst with no endo..letter does say iv a cyst 6cm on right but no mention of endo then goes on to say after having csections its significant , likely stage 4 endo!!only likely..so hes not sure, your right,, so makes me feel he wants to use me as a blooming guinea pig he works for nuffield health and has a interest in endo so says his private health page..(as he saw me in NHS hosp) ??? many thanks hope i make sense on monday when i see him, iv no date as yet.. but he just kinda said, so hey what do you want me to do?? in last appt..grr annoying .. will be writing letter tommorrow.. the web adress says england i live in wales?? but hospita;s in england so should be oks...

    mant thanks hun for taking your time to reply

  • Don't have a hysterectomy. You need to get a second opinion with a different gynea, one who specialises in endo. There are few are far between but they are out there, just research or ask on here for your local area. Just because he is saying that he is wrong. A proper endo gynea can treat endo without taking your womb and ovaries. I would say it means that he isn't specialised in endo and hasn't got the skill to deal with it, it sounds like to me he has the attitude just whip it all out. This is female castration as it's the equivalent to 'balls' on a man. You need your ovaries later on in life or it will give you endess proplems that they will never discuss with us like bone fractures and loads loads more. Go to the gp and get referred to a different gynea and if necessary a different hospital. Him rushing you like that isn't quite professional, any woman needs time to get her head around a huge decision like a hysterectomy. If you don't want one then please don't be persuaded ny a man to have one. It is against your best interests and easy money for him X

  • Whilst I agree with what Impatient and wp22 have said, might I also suggest that you take someone along with you to your next appointment for support and also so that you won't be pushed into making a snap decision that you will later regret. x

  • I rushed into a full hysterectomy when I was about 43 and the consultant recommended taking my ovaries, which he did. He was worried that the cysts I had that time were 'sinister' rather than endo ones which is why I rushed into it, but with hindsight I wish I had taken my time and researched a bit first. So asking questions is really good.

    I really wish I had been able to keep an ovary (like Impatient one had to go but I think the other could have been saved). You don't realise until you lose them how important they are to your hormone levels and general wellbeing. Since losing mine I have had real issue with my sex drive and sexuality, feelings of being a woman etc. I'm sure not everyone experiences this and maybe it's just me (finally realising I couldn't have more children didn't help). However it might be something to be aware of.

    Taking HRT really isn't a problem for me now (let's face it lots of people our age are starting to take it anyway). However I do still have some problems with pain and not sure why at the moment.

    I haven't had any problems with weight gain or exercise, am perfectly healthy other than a bit of pain.

    I don't actually regret having hysterectomy or losing my cervix, especially since I had adenomyosis as well, just wish I still had an ovary!

    Good idea to take someone along with you to an appointment, as long as it is someone who doesn't always go along with everything a doctor says and tries to convince you to do whatever the consultant says. You just need someone who can help you take in the facts and talk it through with you.

    Good luck. Let me know if you need any more information.

  • Hello,

    All of this is so frightening I know and I can understand why you are scared. I have been there. It all sounds so horrible, especially to receive it in a letter like that. Please be reassured that many women have been in your position and with good treatment can go on to lead a life with reduced pain and can feel better in themselves.

    Make sure the NHS trust you are being treated by is a BSGE registered centre (look on the website - google BSGE and it will come up). If not you can ask your GP to refer you thru choose and book or ring and email the BSGE directly with questions and they can help. PALS should also help you. BSGE centres have consultants that are experienced and trained and most have specialist nurses to go through things with you too. Endometriosis UK have a help line too and it may be worth ringing them.

    Also no one can make you have an operation you don't feel comfortable having.

    Love Jemma x

  • Hi

    also I had really high ca 125 - most women with endo do, they should have explained that. big hugs x x

    check out this website also - cureendometriosis.org.uk. Really useful stuff on there x x

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