Adenomyosis and Endo, Back pain?

Hi. I'm just wondering how severe the back pain is that you experience with both these diagnosis? Does it suddenly get worse, even when it's not your period?

Currently 4 months out of surgery to remove endo and adhesions and been told I probably have adenomyosis as well as severe endo. I have suffered with back pain for a few years , but suddenly, with my last period, it's become very severe (7days of it being high pain level and counting, even with painkillers)

I have found out a few weeks ago I have cysts returned, a few smaller than 2 cm on my ovaries and a 3cm cyst that's behind my left ovary somewhere. So not sure if my sudden high pain is to do with these?

Just wondered if you had severe back pain, if it improves on its own or not, and what painkillers are best to help treat it. Will be seeking medical advice ASAP.

(Taking naproxen 500mg twice a day and codeine 16mg and 1000mg paracetamol every 4 hours)

8 Replies

  • The pain you are feeling is returning endo and its hated cousin adhesions

    I had it most my life

    I made it to menopause now pain free

    Aden disease you speak of is usually seen in older women but who knows

    Either way

    I had many surgeries for it and none helped

    The bcp for ten months did help as it stopped all action

    There are other meds to stop cycles

    You may want to try

  • I know, as the cysts are back, that endo has returned (some look classic endometriomas) and I was thinking maybe the adhesions were back again.

    I am nearly 40 so suspect adenomyosis is probably a correct diagnosis. Certainly had more back pain in the last few years.

    I'm just about to embark on IVF next week (second cycle) so hormone drugs are not an option until we have finished trying for a family (which will be after this cycle, as it's our last)

    Thanks for sharing and the advice, and I'm glad menopause has bought you some relief....finally.

  • Hello,

    I have a diagnosis of both conditions. The only endo found was on my uterosacral ligament but my uterus is 'riddled with' adeno, apparently.

    I have spells, sometimes lasting a week or so, of crippling back pain but I don't know which condition is to blame - could be a combination of the two.

    You're taking similar meds to me, the only other thing I can suggest is heat. I have the red marks on my back associated with over use of a hot water bottle but sometimes it's the only thing that makes a real difference.

    The pain does seem to ease off of its own accord and I haven't spotted a pattern to it... yet.

    I hope you start to feel better soon x

  • Interesting to know you suffer bouts of crippling back pain (I sympathise)... Hopefully mine is just a flare up and will settle too.

    Yes, will have to crack out the hot water bottle too... I use it during my period quite a lot.

    I take it it doesn't just coincide with your period? That's when I usually have bad pain, but this back pain came on worse, just after my period stopped.

    Saw a nurse and GP today and basically my GP seemed to think it could not be endo related so soon after my operation (I disagree as already got cysts back!) and said to just carry on with meds and maybe a bit phsyio? She will refer me back if pain continues for a few weeks.... Not that helpful!

  • Oh dear, it gets so frustrating doesn't it.

    The back pain can happen any time but after saying I haven't noticed a pattern I had a little think and yes, it's often just after my period. This is when I tend to bloat so much I look pregnant. Might have something to do with my posture - I was trying to describe to my sister how the bloating and heaviness makes me feel permanently bent over when it's at its worst.

    I really hope your pain doesn't last 'a few weeks'!!

  • Hello

    I am sorry you are experiencing this pain. I am new to adenomyosis but I know it's not just a disease of older women. I think it probably goes undiagnosed and can't be 100 % confirmed until the uterus has been sent to a lab.

    I have found lots of info on Facebook. The Adenomyosis Advice Association have a page that you can 'like'. They also answer private messages... I've found them to be excellent. There's also a private group called Adenomyosis Support. I felt quite emotional after I joined, I realised that lots of women feel the same as me and that probably a lot of what I put down to endo was actually adeno.

    Did you have your surgery with a BSGE endo specialist? X

  • Hi, yes I've also been reading up about adenomyosis since I found out I might have it. Most of my symptoms fit (except my periods are not that heavy or clotty) but as I'm 40 and the consultant said my uterus looked bulky, it's probably a given.

    Thanks for the info about Facebook site... I will go take a look. Good that you can ask questions and get support.

    I didn't have my last surgery at a bsge center.... I will be asking to be reffered to one next time. My surgeon is the endo specialist at our hospital, but I've not been that happy with treatment. This last operation was supposed to be extensive and at my review a few weeks ago, he gave the impression it wasn't very extensive and that we had planned all along for him to do more surgery (?) as he could not get it all in one go. So I feel he rushed it and didn't spend all the time he needed....... And I waited 4 months (being told I could wait 6 months or more, until I complained)

    Cheers for the reply, it's appreciated x

  • I'm 41, I don't have heavy or clotty periods either! But as soon as I described my symptoms to the endo specialist he said 'I'd imagine that you have adeno as well as endo'!

    My General gynae tried telling me that he was an endo specialist!! I'm pretty sure I know more than he does.

    I hope you can find a good one near you. I travelled 2 1/2 hours to mine. Hopefully if you have some good excision the cysts won't return again? Mine couldn't get it all as a cyst had ruptured so I'll need further surgery too. X

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