Endo comes and goes

Hey ladies I tend to find my endo comes and goes.. Some times it's excruciating and I have horrendous back ache ibs and ovary pain then others it's just mild back ache and no lower abdominal pain... However I still have uncomfortable pain after opening bowels I sometime have sore twinges on my good days but my diagnostic lap is next week for endo and I'm worried as pains not there this week xxxx

16 Replies

  • I'm exactly the same.... At the moment my Endo is "quiet" and apart from sciatica and thigh pain, I'm not suffering at all.

    However, this time last month... I was in complete agony and could hardly move!

    I'm not sure why this happens but it's always been the same for me ever since I was diagnosed in 1991.



  • a lot of pain can be caused by the bleeding from endo sites falling on and irritating particular surfaces which are very sensitive. If they have grown scar tissue adhesions that will give them some protection from future bleeds, but also gravity plays a part in where any bleeds will end up. Just being lucky to be stood, sat or lying at the right angle to avoid that blood landing on a sensitive spot can save you a lot of discomfort.

  • Hello impatient.

    Do you think Endo can be quiet for a time and then flare up again, without it being treated?

    I definitely have times when my pain is through the roof and times when it's hardly there!

    I hope you are well.

    Barbara x

  • I'm the same Barbara I can go for a walk with my little boy and come back near years in lower abdominal pain then some days it's just my back ache very confusing and very worrying xxxx

  • I find exercise definitely makes things worse. Not necessary straight away and sometimes not until the morning after.

    It's very confusing !

  • I would say so from my own experience. some months were certainly considerably worse than others. But there wasn't a good period since the 1st one, but some months were horrific compared to others.

  • My pain journey started in March. Between now and then, I've had a few days when the pain was unbearable and I resorted to taking a sleeping aid so I could just be asleep and not be aware of the pain anymore. Other days, it's been persistent and annoying but I still managed to stumble through the work day (cold sweats and all). Then there are other times when I will have pain for a few hours, it seems that the painkillers actually help and I don't have pain until later in the day. There are even few days in the past months when I have had no pain at all - which always catches me by surprise.

    It is all very bizarre to me. But what's the strangest part is the variation of the pain location. There's the sharp cramp that runs in a line under my belly, then the one next to my navel that feels like someone is tearing at me from the inside, there's a dull pain right in my groin, rectal pain that makes sitting, lying or standing absolute misery, and most recently, the pain in my hip joint itself. So when I bend at the hip in any way I want to howl. Ever notice how much you bend your hip joint?! Plus of course the general abdominal/pelvic cramping that I've known from the time I've had my period.

    Does anyone else have this ridiculous variation in pain location as well as pain intensity?

    I'm scheduled for a laparoscopy on July 7th so that I can know if this really is endo. I'm trying to be calm about it, but I know that I'm what my GP calls a duck. Calm and serene as I glide through the water, because below my feet are moving frantically to maintain a facade of calm and elegance.

  • I am exactly the same,

    Some days I'm fine.. Some days it's on my left side (ovary) some days it's on my right sometimes my lower belly and back then all of them.. Then sometimes just my back or sometimes just my belly.. Then I can wake up and it feels like it's gone then after a day being fine I'll rest at night then bang I'm in pain!.. Iv always suffered period which are 24/7 to no known cause so this sounds pretty much like I have endo! But my diagnostic lap is on Friday! Xxxxz

  • Good luck with the lap! I hope it goes well. Let us know how it goes.

    I figure it sounds like I have endo too...and that's what both the GP and Ob/Gyn think. I just want to know for sure so I can at least know what to do next.

  • your symptoms sound exactly like mine, my lap found adhesions but no endo, i'm still in pain (in varied locations and intensity!). really thinking about getting a second opinion from an endo specialist x

  • What does the doctor say is the cause of the pain? The adhesions only? And if so, what is the most likely cause of the adhesions? What's your current gyne recommending that you do now?

  • Apparently these adhesions are likely to have been there since I was born - which doesn't explain why they only started causing problems when I started my periods, or why I bleed so heavily during my period that I pass out/can't go out. Current gynae didn't really say anything useful - discharged me immediately after surgery. My GP has referred me back to him for follow up as the diagnosis makes no sense. x

  • That sounds frustrating. Are you having the same level of pain as you had when you started your periods or had it intensified? Because if there has been a change I would want to know why.

    A second opinion doesn't sound like a bad idea, especially if you can't get greater clarification from the current gynaecologist.

  • Seems to be getting worse for sure. I'm just not sure how much experience with endo the current gynae has.

  • Then follow your gut.

  • he seems to be more of an IVF specialist

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