What happens next?

Hey!

So I had my first lap in January 2014 which confirmed endo. I had this burnt off as at the time this was only mild.

I had a check up in June where pain was starting to get worse again. I was due to go back in December but have managed to get my appt brought forward to September as pain is now everyday and unbearable most days! My work and private life are both being affected by this which is not good!

I was just wondering what I can expect to happen in my next appt in September and what the gyneo will say/suggest.

If anyone can share their stories that would be appreciated :) x

2 Replies

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  • What did you do to stop your periods after the diagnosis?

    Have your periods actually stopped now - and this pain you are experiencing is not worsened by being on a period?

    The reason for asking is that endo pains are generally with your monthly cycle. Stopping the cycle should see an improvement in that side of things.

    Persistant pains are more likely to be from adhesions or scarring from endo or surgery, or from a leaking or twisted ovarian cyst.

    For cysts or possible cysts having an ultrasound scan is the first step to identifying them, measuring them and then monitoring them.

    They do not always need surgery to remove. Most will shrink back by themselves over time, some will leak or pop and empty completely and go, some will refill up and grow.

    There are a number of different types of cyst, they can be painful and persistant. Not all are caused by endo.

    Most are not. By monitoring them, the scans can often show what the cyst type is from the appearance on the scan of the contents of the cyst. Once they get to an operable size (usually 3.5 to 5cm depending on type) then surgery is more likely to be offered to you...meantime having suitably strong enough pain killers will help take the edge off the pains and you should speak to your GP about pain relief options.

    If the problem is not cysts but likely to be scarring and adhesions then sometimes surgery to cut them back is an option - but tends to be a temporary fix as each surgery encourages more of the wretched stuff to grow.

    At any rate - whatever it is needs investigating, and I wouldn't wait to see a gynaecologist, your GP can refer you for a scan on possible cysts in the meantime, but sometimes waiting lists for these scans can be a lengthy wait and may take longer than waiting to see your specialist in Sept.

    Do keep in contact with your GP to make sure your pain relief is adequate and that you are taking steps to reduce or stop periods as that should help if this is anything to do with endo. It won't make any difference if it is adhesions or a twisted ovary or cyst. Good Luck.

  • Hi Impatient, thank you for the information and advice!

    I haven't had a period since I had the mirena coil back in January. Even before I had the coil my periods were ALWAYS irregular and extremely painful so find it very hard to pinpoint menstrual pain. I have been keeping a pain diary and indicated on a diagram where they are so hopefully this will be some help to the doctors and gynecologists. I only have to wait 2 more weeks till my appointment however really am at my wits end with it.

    I am hoping that they don't just brush me off again as my circumstances have now started to change so hopefully this works in my favor.

    Will the hospital be likely to complete the scans when I go in 2 weeks? Would hate to have to be put on another waiting list as unfortunately don't get private healthcare through my work.

    Thank you again for noticing my post.

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