Looking for advice

Hi I am at my wits end with pain and have just come back from a gynae app where I was told my symptoms are more than likely a back problem or ibs. The reason he gave was that endometriosis does not give pain in the back that radiates to the legs!!!

Please can anyone with endometriosis tell me if they have experienced this type of pain? It appears that unless you are doubled over with pelvic cramps the medical staff don't think it's caused by endometriosis x

I was diagnosed with endo in 2005 but a further laparoscopy in 2011 showed no evidence of endo as previously seen, so now I just feel like a complete nutter who is imagining all this

5 Replies

  • I had them all them pains and was bk and forth the hospital and felt like I was going insane, but was finally told I had endo, had a sub total hysterectomy and now 5 years on my endo is still there and has stuck my bowel and bladder together so now on prostap and waiting for a full hysterectomy, so don't back down u no ur own body best,

    Hoping you get sorted soon Hun xx

  • Hi Janie,

    I think the location of pain depends a lot on the location of the endo. I have certainly suffered with lower back pain and a week or 2 before a period, I suffer awful pain down my thighs particularly the right one, it's a pain that often causes me to want to punch it to get rid of it! (this is unsuccessful on most occasions!)

    I was diagnosed with stage 4, mainly in my pouch of douglas but also affecting my colon, pelvic and vaginal walls. My reproductive organs were unaffected-I believe, from reading this forum that many gynaes only look here for signs of endo so this may be why yours was dismissed the 2nd time. I have also learnt whilst on here that many sufferers also have back and leg pain so you are certainly not a 'nutter'!

    I would try and get a referral elsewhere-it seems people on here are recommending the recognised specialised endo centres as places to go and if I ever need further help, I will try to go to one of these as although my surgeon was great-he was unable to remove all of my endo due to its location.

    Good luck x

  • Thank you both for your replies x I have had a little cry and feeling bit better now x I have made an app at a back care clinic for thurs to see if they pick anything up as at least if I do what the doctors are suggesting I can say I have tried

    Just felt so dismissed earlier like I am meant to just cope with it and this has been going on for 16 years so to say I'm fed up is putting it mildly x

    My endo was clustered in my pelvis around a nerve and artery so they wouldn't remove it due to the risks x that's why I was always led to believe my leg pain was coming from the irritation of the nerve that runs down my leg x

  • Hi Janie - please can you click on my name and read my post on Pouch of Douglas endo. This is one of the common areas for endo but also very commonly missed especially by general gynaecologists who often report it as normal as they can mistake scar tissue there for normal peritoneum. There are very often deep endo nodules hidden beneath. You need to go to your GP and say that your gynae told you that endo can't cause back pain that radiates to the legs but you have sought advise from this community (which is recommended by the NHS itself) and had it confirmed that those symptoms are typical of POD endo. Look at my post on finding a specialist. All endo should be treated by specialists in the condition, but especially what is called rectovaginal endo. Get back if you have any problems with the referral. x

  • Thank you so much x have just read it and it's so helpful x

You may also like...