Just diagnosed with Endo......feels very scary

I'm a single mum of 4 and have had pain every month, but as the years have gone on the pain starts earlier, and lasts longer. I went to the doctor a few years ago, who said it sounded like endo, but i buried my head in the sand. It's now at the stage where its pretty unbearable, and the doctor last week said that it is endo, and he is arranging a scan. I had blood taken, and the next day, the nurse called and asked me to book an appointment asap, as my ESR levels are 'significantly raised'. Does anyone know what that means in terms of the endo, and what should i expect at the doctors on Monday? Sorry its such a long post, but my head's going about 1000miles a minute! Lynne

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  • Hello Lynne.

    A raised ESR blood level could indicate inflammation or an infection. It could be due to a number of things.

    Try not to worry, I'm sure your GP will get to the bottom of it.

    Best wishes,

    Barbara x

  • At this stage you are diagnosed 'suspected endo'. It can only be confirmed by having surgery to locate where in the body any endo is nesting. Might be one or two locations, could be several hundred and anything inbetween.

    Surgery is the only way to pinpoint the locations and extent of endo spread and to get the endo lesions removed.

    That deals with old endo or existing endo.

    After surgery to remove the old stuff you will need to take steps to prevent new endo cells flooding in to the tummy region and settling down there.

    While no one knows all the ways that endo spreads, one of the known ways is through having periods - where the period and the endo cells from inside the womb do not escape through the vagina as a period - instead they back flow along the fallopian tubes in to the tummy and cannot escape from there.

    This is why after surgery on endo - the main aim is to cut back the number of periods in a year or stop them altogether on a longer term basis.

    It doesn't entirely erradicate the risk of endo spreading but is one thing you can do for yourself to reduce that risk a great deal.

    For that to happen, it means birth control methods, arm implants, or mirena coil or just taking BC pill packs back to back and not have a monthly period in between.

    Endo thinks it is in the womb even when it isn't - so if you are on a period and shedding the womb lining and then bleeding from the small wounds left behind - the same thing will happen to all the sites of endo elsewhere in the body. This trapped blood irritates the tissue it falls on causing injuries and pain inside.

    It is these wounds that your body is fighting to heal up and also all the locations where endo is bleeding (including the normal ones in the womb) which puts a huge strain on your immune and healing system, causing raised levels in blood tests.

    So while it looks highly likely you do have endo, quite how much and where it is and getting a diffinitive diagnosis will only come with surgery.

    There could be many tests to undergo before you get to surgery - to rule out a whole heap of other possible causes for your symptoms. and if they do spot anything else that needs addressing in the op - like cysts or fibroids they can be added to the tasks to be done at the op.

    My advice is push for diagnostic surgery - and ask that they install the mirena coil at that time while you are out cold. It takes 4-6 months to get working but should then stop period, period pains etc for up to 5 years with no need to take any BC pills, no costly tampons and towels and it provides a very good means of reducing the risk of new endo spreding from the uterus all the time it is working inside you.

    Please don't worry unduly - the smallest patches of endo can be the most painful and are easily removed in a lap op in most cases.

    Extensive endo and adhesions is more complex surgery - but even that can provide effective relief from monthly pain and if you do take steps to stop your periods you may not have any relapse to endo pain for long time afterwards.

    If you do need lap op - then no lifting kids for about 10 weeks while you heal, but you should be able to potter about the house within 24hrs and make the children take over all the essential tasks they can manage to. If your mum or a sister or cousin lives close by or can move in to help out, so much the better.

    The first couple of weeks post op are a struggle for anyone and any help you can call on will be worth while. Perhaps book the op for school holidays and pack the kids off to their dad(s), or friends or relations for a couple of weeks, while you concentrate on getting better and looking after yourself and not over doing it.

    There cn be other causes for the ESR levels - besides endo, so expect some tests to eliminate other causes.

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