Endo and will it ever go away

I have suffered from I was sixteen I'm now thirty four...I've been on many pills..then the coil then two surgeries...zoladex injection and I can't take no more...I feel what life is it to be constantly like this..I don't want to keep having procedure after procedure...my marriage broke down and I'm at the end of my tether..now the past two days I've had blinding migraines..does anyone else get these..I have another appointment with consultant on 14 th of this month...where I feel I need to be begging for a hysterectomy or have everything removed..has anyone else had everything removed?

10 Replies

  • Hi, I'm sorry to hear things have been so difficult for you, and you are feeling like that. 😞

    A hysterectomy is not the correct treatment for endometriosis though, removing the uterus only treats problems with the uterus itself such as adenomyosis or bleeding issues. Although you have already had 2 surgeries it's possible you haven't had your endo treated properly, the gold standard treatment is excision which means cutting out all the disease. The reason so many women are having / have had lots of repeat surgeries is because most most Gynaes simply burn endo. So they are having ineffective burning surgery regularly - diathermy, ablation etc - in 80-90% of cases this rarely destroys all the disease. Think of burning endo as weeding without removing the root, so it inevitably recurs. If all endo is thoroughly excised for the vast majority of women it does not recur.

    Are you in the UK and is the consultant you are seeing an endo specialist? If not I suggest you ask to be referred to one, the rules for this are different in the various regions. If you are in England it's very straightforward and there are many Centres to choose from, but unfortunately some Specialists are a lot better than others, so please research and ask for feedback before you decide which one to go to. bsge.org.uk/ec-BSGE-accredi...

    I hope you can move forward, take control and work towards getting the best treatment for your endo, and that this will make you feel more positive! 😊

    I would also suggest you join EndoMetropolis group on Facebook which is a positive, empowering, educational discussion group, with several leading endo experts involved. You can also ask for feedback on the specialists on there, as it is forbidden on this forum. m.facebook.com/groups/28907...

  • Thank you so much for your reply! It is much appreciated...I live in northern Ireland my consultant is an endo specialist..I've had him for the past six years.. but that is good to know about hysterectomy...A few weeks ago I ended up in A&E and gynae and the consultant mentioned hysterectomy..si I've had it in my head...but thank you for letting me know about Facebook group...you know when you've felt you had enough that's how I'm feeling and I'm sure a lot of women feel the same...

  • Hi - is your specialist at the endo centre as there is only one in Ireland? Many general gynaecologists are referred to as 'specialists' but they deal with many different conditions and endo is typically not treated too well in general gynaecology.

  • There is only one specialist centre in Derry there are specialists in Belfast but I know mine does deal with other gynae issues - they're trying to set up a dedicated clinic but there's a problem with funds I think.

  • You are welcome! :-) I think you do need to check whether they really are an endo specialist. There is only one centre in Northern Ireland in Londonderry, if you click on that BSGE link above and check if it's either of those consultants. Also find out how your endo was surgically treated at your previous surgeries with your consultant. Even if it is at an endo centre with a specialist, it's important that you ask them lots of questions and find out exactly what they would plan to do if you had surgery. If you do join EndoMetropolis there is a file that explains the surgical techniques and another of questions to ask your consultant, it's really important that we understand these things ourselves to get the best treatment.

    The gynae at A&E who mentioned a hysterectomy was probably not up to date on endo, sadly lots of them are not.

    I hope things get easier for you soon.

  • Hey, I can't really add anything to what the other ladies have said, other than to say that I've had hysterectomy mentioned to me as a probable outcome eventually too (I've adenomyosis as well which is why this is the case).

    There is a support group meeting once a month in Belfast if you feel it would be useful to chat to other n.i. Ladies who are going through the same and the treatment options available here endometriosis-uk.org/belfas...

    I'm going to start going soon xx

  • Thank you everyone who has gotten back to me...I just felt so down this weekend and it's lifted me to know you took time to reply...my consultant is based in Belfast and from looking into it he does deal with a lot of other gynae things...so he isn't just an endo specialist. To be honest I really need to do a lot of research now because I haven't even had a review appointment from last November surgery...but again thank you ladies..x

  • That's what we're all here for! I'm thinking the same thing re. Researching other options. If your consultant is the same as mine (can't mention names on here) the long wait for review doesn't surprise me - my last post surgical review took nearly a year to come through!! Know it's a nightmare waiting when you need them. They're so understaffed for the demand. Hope your appointment hurries up soon for you and you can move forward.

    Take care xx

  • I have both endometriosis and PCOS, and I completely get it. I've had every procedure and medication they can throw at me except the hysterectomy. I do get the really bad headaches too. Honestly the only thing that helps is sleep for those. I just had a friend have a major breakthrough. I'm pretty overweight, and have been ever since I was diagnosed. My friend had weight loss surgery....and she feels a million times better!!! She says that she is practically symptom free and can easily handle the pain with basic NSAID's. I am completely envious...I am looking into having surgery myself. It has to be better than the hysterectomy. There is still a descent chance of problems even if the parts are removed..... don't just too fast..

    good luck. <3

  • Hi girls well today I seen my consultant...He couldn't even examine me properly as I was in so much pain and starting me on a four month course of of Prostap this week and also sending me to a clinical psychologist...and to talk to someone also about fertility in future...im really hoping these injections work and im going to be as positive as I can be... anything is better than feeling the way im feeling now...x

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