Feeling so low, awaiting next cons appointment stage 3/4 endo

I have one child and was diagnosed with stage 3/4 endo after several major issues and NHS failings, I had a huge op to remove adhesions and scaring and endo, re-position my womb, and i had an mri and a hsg, and a lap. last procedure was over 12 months ago, pain levels are cranking up again big time. I've been told my tubes are blocked, hence why we haven;t been able to concieve. I'm due to see the top consultant in Jan, after I made a complaint about the last consultant visit which left me in tears, literally sobbing mess, she was a cow, told me I had less than 5% chance of having another baby, and there was nothing they can do for me. Does anyone have any advice on where to go next, what procedure I could ask for, I really want another baby, so dont want to go on the pill, I'm thinking of trying to get my tubes unblocked but the last consultant said they wouldn't; entertain it as theres too high a risk of eptopic. I also have endo in the pouch of douglas which is causing me severe bowel pain.

Feeling so lost and down, thanks everyone xx

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  • IVF really is your only realistic option if the tubes are blocked there is no other way for that egg to reach a sperm. It has to by-pass the blockage somehow and the safest way to do that is to harvest it- then fertilise it and replant it back in the uterus.

    I know you will be upset at being told only 5% chance - but that is a lot more than many ladies with endo have of a natural pregnancy and even with IVF chances can be very low too. Unblocking tubes is not the best route forward, for a start it may simply not be possible-every surgery creates more scar tissue - so even if they were temporarily unblocked it wouldn't last long before the wounds healed and the scarring built up again - more than likely worse than before. So there really isn't much point in going down that route and in the end probably wiping out any slim chances you had of a natural conception anyway.

    Before you contemplate baby No.2, you really should be putting your own health first. Baby no2 does not exist, you do and so does your son, and you should be concentrating on getting yourself as well as you can be, battling endo so you are better able to be a super mum to the child you already do have to take care of.

    Your next step is to get the endo removed from the POD - to do that you will need to be referred to an endo specialist colorectal surgeon AND an endo gynae surgeon to work as a team to remove all the trapped endo in the pod and then you need recovery time after that op. Then after that has been seen to - and your health is much improved and hopefully your pain levels reduced a lot too - and you get back in control of things- that is the time to consider going down the conceiving baby no.2 route.

    It could be over a year away before you are well enough - fully recovered from op etc, so in the meantime no reason at all why you shouldn't take back some control over your periods to stop them happening and stop any more back flow of blood and menstrual lining going up the tubes and possibly blocking them further. It makes sense to stop your periods being quite so often as they are right now as you are not ready for baby No.2 with endo in the POD that is causing pain and needs seeing to.

    You really should be aiming to be in the best of health yourself before trying to conceive a new little one.

    Obviously the visit with the last consultant was a very emotional one, understandably - but however she delivered the news to you, it was never going to be what you wanted to hear, but it was honest of her to be up front and realistic about the situation you are in rather than building your hopes up, when in truth it won't be an easy journey whatever you decide to do, and whatever you do decide to do, your no.1 priorities are your own long term health so you can take care of your son.

    Do your research homework, get your periods under management in the short term, speak to the consultant in Jan and discuss getting referred to one of the accredited endo centres where they have the endo specialist colorectal surgeons on the surgical teams, and take things from there.

    The endo centres are listed on

    bsge.org.uk/ec-BSGE-accredi...

    The NHS guidelines for POD endo are on

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

  • Thankyou very much, thats some pretty good advice there, I guess it just feels so very final ! But I know its time to go back on the pill of some sort any suggestions at all please many thanks x

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