Very new here

I am due to have an ultra sound scan looking for fibroids next month the GP thought she could feel them. A friend suggested all my symptoms may be endometriosis. I looked it up, could not believe it, I have 99% of the symptoms many for example, ovulation pain, for over 20 years. But I am 52, am I too old. Trouble is I did not struggle getting pregnant though last baby was 1996. I am very tough and have a high pain tolerance and thought all I go through is normal ageing. And I don't have pain with internal exams.

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  • not to old - I didn't finally get diagnosed till I was in my 40s, and there are quite a few forum members who soldiered on without their GPs putting all the clues together that were screaming endo.

    it's no surprise given the era we grew up in, but even for today's teens there's still on average a 7 year wait for a diagnostic surgery.

    In our day - women had to put up and shut up, or have a hysterectomy as a routine 'cure'.

    These days girls and women are told they have IBS and persuading their doctors that it is more than IBS can take a very long time.

    Mercifully you should get yours a lot quicker if that is something you want to go for.

    Endo is a lifetime condition - fed by oestrogen, so after a natural menopause when the oestrogen levels die off naturally, provided you are not on HRT then endo tends to become less active and calms down.

    As does fibroids - and you can have both.

    Fibroids being inside the womb walls, whereas endo is everywhere but the uterus.

    There is another condition very similar to endo but again is only found in uterus muscle walls and that is called adenomyosis.

    50 is the age below which surgeons now tend to do everything to avoid giving a hysterectomy - because for starters it doesn't cure endo..but it would remove fibroids and it would remove adenomyosis entirely. So a hysterectomy could well be offered to you given your age and certainly if adeno or fibroids are suspected.

    If you have not yet menopaused then try and hold on to at least one of the ovaries. you only need 1 working ovary to tied you over till you naturally menopause and avoid the need for HRT.

    Regarding endo deposits - the amount, and the locations of the endo varies in every single one of us.

    Unless endo is removed at the same time as you have a hysterectomy - it will remain acting just like your uterus lining, growing eachmonth and shedding lke its own little period inside where ever the endo is found. It will respond to oestrogen levels in the body produced by ovaries, HRT, adrenal glands and tummy fat too and certain foods you consume. So while it exists, there is every possibility that it will to some degree remain active and subject to the oestrogen fluctuations, which is why it is so important to ensure that all existing endo is removed where possible at the same time as you may have a hysterectomy, aand there isno need for a hysterectomy if you only have endo, and don't have fibroids or adenomyoisis, unless you happen to want one to stop you having any more periods before menopause stops them anyway.

    Another option is to get a mirena coil fitted. Marvellous gadget - it is just 20% of the hormones used in regular birth control pills, and yet works for 5 years and stops periods in most women withing 4-6 months of having it put in. It's a fab thing for most users, but it doesn't suit everyone.

    It is certainly a worthy option to consider and is the most popular period stopper for those of us approaching menopause but not able or willing to have hysterectomy done.

    There are unfortunately plenty of women who despite hysterectomy and menopause continue to have problems from endo - or the scarring and adhesions caused by years of endo, so while surgery can certainly improve things for you, there are risks that it wont be entirely successful.

    At this stage of things, you will have a few tests to get through before surgery.

    An ultra-sound and possibly an internal or transvaginal ultrasound which is looking for things other than endo, such as fibroids, hydrosalpinx, adenomyosis and other possible issues like cysts.

    It doesn't usually spot endo, but there are sometimes clues to you having endo from a scan.

    There is a blood test called a CA125 which while it is looking for cancer markers the same markers appear with endo, so a high result - combined with a lengthy track record of endo symptoms is 99.9% of the time at least, going to mean more of a confirmation that endo is an issue. It isn't overy reliable, because you can have raging endo and a low CA125 result, or a high CA125 and very little endo. but a high result and your age would probably get you fast tracked for surgery which is bonus believe me, but it isn't anything to worry about on the OC front, as most cases occur after menopause, or in families with the BRCA 1 and 2 genes showing a family history of breast and ovarian cancers at a much younger age.

    If you have not yet menopaused and haven't had a mum or sibling get breast or ovarian cancer then the risk is very low and again it points to endo and nothing more sinister.

    It could be that you don't fancy surgery being much closer to natural menopause age, and just want to stop your periods and period pains till the natural event happens, in which case mirena coil is your best bet, there are drugs like Depo-Provera which you have injected every 3 months, or arm implants that last 3 years.

    If you do have fibroids, then having them whipped out -probably with the uterus itself will be the best bet and that stops your menstrual periods.... but doesn't stop endo if you have that too, but Depo-provera would keep them deactivated while on the drug.

    There are a sizeable number of us middle aged women with endo on the forum. Some in their 50s, a lot more in their 40s approaching 50s. and a few who have been through menopause and still have problems with their endo because it wasn't removed entirely when they had a hysterectomy earlier in life.

    age is no barrier to having endo.

    I was just reading earlier today about an 83 year old man - who being treated with oestrogen for prostate cancer was discovered to have an endometrioma cyst suddenly come to life. He had been living 83 years with dormant endometriosis, it must have implanted as he developed as a foetus and all his life the male hormones kept it in an inactive state until he was subjected to excess oestrogen and suddenly it sprang to life.

    Male endometriosis is very rare indeed, but he had endo 83 years before his diagnosis.

    Wait and see what the scans show up, and then you have a better idea which direction to research before coming to any decisions as to how you want to handle it.

    Your gynaecology surgeon will discuss surgical options with you, but for pain relief, or period controlling methods - that's between you and your GP or the family planning clinic, both of whom can prescribe any period controllers that you may want to try out.... and they are free.

    Taking birth control pill packs back to back to reduce number of periods a year is one option,

    Progesterone only is better for endo, but some ladies prefer to stick to the combi pills that do include estrdiols or oestrogen because for them the side effects are more tolerable.

    Skyla or Mirena Coil which is inserted in to the uterus - only 20% of the dose of BC pills.

    Nexplanon/Implanon arm implants

    DepoProvera injections

    and worst of all is GnRH hormone chemo drugs.... useless for endo (though frequently prescribed) but actually can be helpful in shrinking fibroids for surgery - but they are wicked and side effects ghastly for a lot of patients and can leave long lasting side effects - so best avoided if at all possible.

    GnRH is pointless if you do have fibroids and opt for a hysterectomy. It can helpif you hve just the fibroids removed and want to preserve the womb for possible baby making later on - but that doesn't apply to you so just steer clear if you have any respect for your body. Horrid things!!! (I'm not a fan at all)

    anyhoo, hope everything goes great in the scan - do keep us posted with events as they unfold and do sk questions and use the searchbox on the green bar at the top of the page as most topics have been discussed already at some point to some degree.

    If you do get offered a hysterectomy - I do rate the hystersisters website as great for all sorts of advice and 1st hand experiences too. Though a US website- there are worldwide members having had hysterectomy for all sorts of reasons and they have a wealth of info.

    For adenomyosis the website is

    adenomyosisadviceassociatio...

    has some fab pages on preparing for gynae operations and preparing for when you come home.

    Even if you don't have adenomyosis. Lots of useful info on there.

    Never too late to do something about gynae problems to try and improve your quality of life. Having a supportive Gp is very helpful, but you do have to take the bull by the horns and make decisions for yourself as to how you want to proceed and you take charge of what options you want to try and when.

    So doing your own homework on what ever gynae condition(s) you are found to have, will give you the confidence to discuss these options with the professionals and decide what's the next step for you.

    Very best of Luck

  • Wow thanks for that very detailed reply. There is indeed a lot to consider. I've been think lot about if surgery with my last child 18 years ago sparked it. I was slim, little boobs and easy periods up to then. During the planned c section my womb fell to pieces in the surgeons hand and obs had to be sewn back together. She told me she wanted to do a hysterectomy but without my permission she didn't. She told me never to get pregnant again as, one contraction would likely rupture it. So I didn't. But since, my weight changed, my boobs grew and grew and all my period stuff, and pain in between, ovulation pain, constipation, losing clots etc etc just took off and have increased.ten fold. I also have confirmation of an auto immune illness. Golly I wonder.

  • Hi there, I'm 50 and was only diagnosed 7 years ago although I've had symptoms since my teens. Just thought my pain levels every month were normal until they became unbearable. An ultrasound would show up fibroids or endometrial cysts but not endometriosis itself. The only real test would be a laparoscopy under general anaesthetic. I would see what the ultrasound shows then take it from there.

  • Hi all,

    Just deleted all the promotional/spam posts.

    Thanks for all the good work bringing this to our attention.

    All the best

    Emma

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