Hi everyone. just went to see my doc and she said since i am at stage 4 endo the only last solution is surgery and since i have only had a

MRI scan and no lapro she is not sure of how much she will remove until she looks inside at the time of surgery. she has given me until april to make my mind up so i wanted to ask those of you who have had the operation, what should i do? will it be better after the op?

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  • hya love what surgery are you having done? where have you got the endo? x

  • hi i have read your replies and i am sorry for not making myself clear. i have had two laps 10 years ago but since my recent treatment i have only had a MRI scan so i think the doc is using the lap results from 10 years ago and the op is a hysterectomy. hope this helps?

  • I'm confused, how can she stage your endo if you haven't had a Lap yet? Am I missing something? x

  • hi i have read your replies and i am sorry for not making myself clear. i have had two laps 10 years ago but since my recent treatment i have only had a MRI scan so i think the doc is using the lap results from 10 years ago and the op is a hysterectomy. hope this helps?

  • yes i couldnt work that one out,, thats why i thought i must of misread what surgery she was having done ,i was abit puzzled xx

  • The only way I found I had stage 4 was thro a lap being done. An MRI scan can show up endo but doubt it would show what stage ur at so I would get the surgery if u think u need it xx

  • hi i have read your replies and i am sorry for not making myself clear. i have had two laps 10 years ago but since my recent treatment i have only had a MRI scan so i think the doc is using the lap results from 10 years ago and the op is a hysterectomy. hope this helps?

  • It's hard to give advice without knowing the current extent of the endo.10 years is very out of date and so much can happen in that time even with hormone treatments etc.

    The difficulty is that having a hysterectomy will solve heavy periods and period pain issues, but it doesn't rid you of endo, because most endo is outside of the uterus on your other nearby organs. Some women do have adenomyosis which is endo-type cells in the walls of the womb and a hysterectomy can help a lot with getting rid of that.

    So if your endo was already on other organs then they need to be tackled too. And surgically removing those legions to get all of the endo off is the best solution, just lasering the top layers simply delays the growth but doesn't stop the endo underneath still being active. If most of your pain is from the womb or when you have periods then a hysterectomy could be worth having, but it doesn't guarantee a pain free after op experience. The only guarantee is that it does end your fertility and your periods.

    I posted the link in the Blog section a few days ago, to a recent article in the Daily Mail on the pros and cons of hysterectomy. It is worth reading as it is very informative.

    dailymail.co.uk/health/arti...

    ..AND read the extra information from Dr Trehan in the comments section underneath.

    So post op results do vary a lot. I know people in my family who swear it was the best thing they had done, others on this forum report continuing problems with extreme pain, so I suspect it's a bit of a gamble for everyone.

  • Hi, I had stage 4 and I would seriously recommend a procedure called 'Total Radical Excision'. As Impatient says above, endo is not just a gynae condition, it is really a disease that can affect the whole of the peritoneum - particularly with stage 4 which means it is generally widespread rather than in small patches and not just confined to the uterus and ovaries More commonly endo is on the outside of the uterus and this can be excised. A hysterectomy is only going to helo if it is adenomyosis (actually inside the muscle of the womb). Unfortunately, there can never be any certainly about that until after a hysterectomy and a biopsy - it can only be suspected by a bulky womb.

    Many surgeons say they do excision of endo but this is usually only 'patch' excision and not really sufficient for widespread endo. The op I had excised the whole top layer of the peritoneum leaving a new clean surface and removed seen and unseen endo and freed up my internal organs that had got glued up and out of place. I also had temporary ovarian suspension which is a large looped stitch that temporarily holds your ovaries away from the healing peritoneum and therefore they do not get re-stuck up. When the stitch is removed, the ovaries fall back into place. I have heard cases where a surgeon has said to a lady 'oh we might as well remove them because they will only get stuck again". It just means that that particular surgeon was not able to do this and save them.

    The surgeon mentioned in the message above was my surgeon. I had the op over 2 years ago now and I have not had any signs of endo pain since. It was all done keyhole and I would certainly recommend it. Unfortunately Mr T is only private now but there are other centres of excellence for endo. With patch excision, it will help if you only have patches but, if you have more than that, then you will keep going back for further patches to be removed. This op deals with it all in one hit and has a much more satisfactory outcome.

    Have a look at his website and it will arm you with information. If your current consultant is not a specialist endo surgeon, but rather a general gynae, I would ask for a second opinion from an endo specialist.

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