Deciding on more surgery

I am new to this forum and looking for any advice on whether or not to have further surgery. I am 50 years old - almost 51 with no sign of let up of periods which are 4 week regular as clockwork. Diagnosed with endo in 1999 and have already had 5 laser laps. Hasnt really blighted my life although no kids possible. Desciribed as having extensive and infiltrating endo with a number of cysts on ovary - last one ebing 5 cm. Only real pain is at start of period for a few hours and it is really bad - periods very light and last about 2 days. Have been treated privately throughout with a well known surgeon who always maintained it was best to remove the endo and adhesions and so question on whether to go through with it never arose. he retired and his replacement although great has a different style and leaves decision to you - I saw him 2 weeks ago and he says he will do it again but its not life threaetning to leave it there. He suggests that as no sign of changing period patterns I could be some time away from menopause. I generally take surgery well - reciovery is quick - last had surgery May 2009 and since then I have got a young dog and the thought of not being active for a few weeks is putting me off - also at the back of my mind is the risk with surgery and bowel piercing - the more times I have sugery the more risk there is that this time it wont go smoothly? I also now work for a cancer charity and it isnt helping me seeing patients that are suffering hugely when I really dont yet am thinking of having surgery. My husband thinks I should go ahead if only to get rid of the last 3 years adhesions and that this time really will be the last - but I still feel I am making "mountains out of moelhills" considering the terrible time many other endo people go through.

Anyone with similar considerations?

4 Replies

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  • Hi Tasmania , have you never been offered zoladex , and hrt , or any other form of drug therapy. , I do not advocate this by the way I am in a similar position to you but have opted to try the endo diet first , in order to try and stop endo further ,, but I have been offered these drug options. I am 53 and still having periods. Helen

  • Hi Tazmania

    If you're 'only' having a few hours pain each month which is manageable for you, I would say don't do it.

    Every time you have surgery, whoever does it and however brilliant they are, scar tissue is left behind. Endometriosis LOVES scar tissue, so all you're getting is a temporary fix because it will start feeding again immediately and you'll be right back to square one.

    Without meaning to be rude, your body is probably going to start taking care of the situation itself very soon naturally - as you rightly say, all surgery carries risks, and just because it's gone well before....you just KNOW that this will be the one time when your luck runs out! and as you rightly say, you run the very real risk of ending up with a whole new set of problems that are much worse than a few hours of pain a month.

    I kind of understand, in this day and age when everything is available more or less immediately, why women feel they are 'entitled' to be free of endo at all times. But the sad fact is that there is no cure for endo. It is what it is, and there comes a point where nothing more can be done. It's not fair, but on the other hand, unpleasant as it is - and I speak as somebody who has to use pethidine to control the pain - it's not going to kill us.

    The only thing I would be concerned about though is the cyst. If a cyst bursts, you're in trouble, so your gynae might want to keep an eye on it but as Helen says that can be dealt with with Zoladex; I've just come out of six months of Zoladex for that precise reason and it worked brilliantly, two small cysts and one large one that presented in October have now completely disappeared.

    Ultimately it's up to you, but I think you've already made your mind up :)

    Good luck, Chrissie xxx

  • Many thanks for both these helpful answers. I think just writing it all down made me feel more certain that on this occasion I will say no to further surgery. I guess I havent really ever thought it through before and all the other expereicnes I see on this site puts my own situation into perspective. I know my consultant did say that there are no new drug therapies he would suggest for me and I guess Zoladex isnt really appropriate for soemone who has only the lightest of periods. At the end of the day whats a few hours of pain every 4 weeks and a day feeling a bit washed out. I have also previosult refused the Mirena coil which I know also gets recommedned.

    Not sure about the endo diet - again I dont seem to suffer enough to make such a radical change although there are certain things that I know dont work that well with me - I avoid pasta and bread other than for weekend treats and with Fybogel daily and lots of fruit and veg the bowel problems I used to have with the endo have improved hugely.

    Its a great forum and thanks for the advice

  • You're welcome. It is nice to be able to discuss things with like minded people. I've been living with endo for 30 years now, but I'm still learning new things all the time by coming here.

    I'm glad you've decided against the surgery. I would make sure they keep an eye on that cyst though; mine always had a habit of appearing from nowhere and growing at an alarming rate, literally doubling in size month to month; it may be worth considering the Zoladex purely to zap that, which will also calm the rest of the endo down for a little while. I won't lie, it's not a bundle of laughs! but it does the job :)

    C x

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