Potential Value of Second Surgery?

Two years ago I was surgically diagnosed with endometriosis at age 19. The intent had been to cauterize any lesions, but the laparascopy revealed only one lesion inside of a fallopian tube, and my OBGYN determined that cauterization would compromise my fertility. My doctor and I agreed that it might be possible to control symptoms and potential worsening by continuing my oral contraceptives and reducing the number of periods I have. Since then, however, my symptoms have worsened. Urinary and bowel symptoms have also emerged. My doctor suggested that I eliminate my periods altogether by skipping the placebos in my birth control, but she also put Lupron (to which I am vehemently opposed) and a second surgery on the table. Recent breakthrough bleeding accompanied by intense pain has made me consider a second surgery, but I'm not entirely sure I see the value. Does endometriosis frequently spread from organ to organ? Could there be new lesions, getting rid of which might ease my symptoms? I'd be sort of embarrassed by going to all the trouble of surgery, only to find that the one little spot is still the sole culprit, and that there's nothing to be done. Has anyone had a similar experience? Is a second surgery overkill, or does the fact that the endometriosis can 'strike' at any time whether or not I'm due for a period indicate that it's getting worse? These are questions I'm finding difficult to research.

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  • Yes, endo does frequently spread from organ to organ. Yes it can grow within 2 years. If you go through this surgery and it's still only one little patch then good! Only you and your doctor will know. The pain isn't relative to the extent of endometriosis so you can't feel stupid about that. It would give you a better idea of where you want to go next with this. Do take your gynaes suggestions on board, useless or not they do want to help. If you really don't want surgery then things like lupron are what is suggested. Have you already tried the implant or the coil? They are constant hormones. I'm not saying you have to have surgery, Im just saying don't be embarrassed to have it. There's a lot of ladies on here that would love to have your gynae. Xxx

  • What pill are you on?

    Are you aware that endo can be fed by different hormones it not a given that for instance estrogen makes it worse it could be that your body is sensitive to oestrogen?

    For me the pop pill makes my symptoms loads worse. Xx

    Whilst I was on the combined pill I was symptom free it's only when they switched me because of my age it reared it's ugly head!

    But I also have bowel symptoms back pain and sometimes chest pain. X

    I'm awaiting an MRI as I have enlarged pelvic lymph nodes and a nodule attached to one that's 4cm long!!

    But yes it can spread and quickly especially if it's being fed the hormone it likes. Xx

    Good luck

  • Hi, I had a lap just over two years ago and I am currently waiting for my second. I have worse symptoms now than I did the first time round, including really bad back pain. I was wrongly told that if I went on the pill it wouldn't return, so I was very surprised to be told it may be back. I also have bowel and bladder troubles. Xx

  • I have recently had a second surgery nearly 4 years after my first one to remove a cyst. It does seem to have spread further despite me reducing the amount of blood going to the wrong places by tricycling. Endo does generally seem to spread and the only way to reduce it is to stop our monthly cycle and get any endo removed.

    One thing Drs don't seem to explain early enough to us endo sufferers is that there can also be issues caused by having lots of abdominal surgery, namely adhesions can form which can cause further issues in there. These are bit of scar tissues, apparently like cobwebs that can tangle up in various organs such as our ovaries etc.

    Each case is very individual, endo doesn't behave the same for everyone. I was nearly 32 when I had my first op but had know for years beforehand that there was an issue and had been dismissed by the Drs and just given a different birth control pill.

    For someone younger like yourself who has a long time before menopause occurs and may wish to preserve fertility until ready for a family I think the sensible advice has got to be stop those periods for as long as possible. Although like you I found the idea of lupron very scary. However if you take the pill back to back for a few months then that may also give you some respite from all of the weird pains etc. I took yasmin for nearly three years and experienced very little pain on it. I tricycled mainly but I still needed another op eventually.

    I'm off the pill now and trying for a baby, very daunting as I know each month its probably getting worse. It is such a personal issue and so hard to feel we have choices forced on us. If a Dr had said to me at 23 when I was sure I had this, that I did have this then I would have maybe made different choices and not left it until my late 30s to try for a baby but I probably wasn't ready for that then!

    I wish you luck with your treatment. Write a list of questions and ask your gynae. Read as much as you can to inform yourself. x

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