Inactive Endometriosis?

Hello there , I'm wondering has anyone been told their Endo is "inactive "? I had LAVH plus BSO last March for Adenomyosis and when surgeon came to see me afterwards I asked if he'd found any Endometriosis. His reply was the same as the previous consultant who did my laparoscopy 8months before..."None that was active ".. so I took it as gospel that was correct ? But for the last few months I have had severe pain in my lower left side which is like period pain and toothache! Also my back hip and leg hurt, it's so similar to before (20 years of pelvic pain!) I still get the same feeling, I'm sure it's Endo ? I have to go to urinate about 12 times a day and if I can't get there as soon as I can I get awful "flare up " pain. ( no symptoms of urine /kidney or bladder infection, just pain) Any ideas or has anyone been told their Endo is "inactive " only to find out it's alive and doing its worst?

10 Replies

  • Hi. I wrote a reply to someone else asking something similar earlier! I also got told I had inactive endo after my most recent lap. Many people on here have said that you can't have inactive endo, so I'm a little confused too. I know it's no help but you're not the only one! Your symptoms sound almost identical to mine, particular with the need to urinate often. Did they offer any treatment or advice? I had the coil fitted, which is now missing! Or did they simply send you on your way? My second lap I didnt even get a follow up appt or see the consultant after I was just discharged. My most recent lap the consultant appears willing to try more things, perhaps because I keep turning up in the system saying i'm in pain, perhaps it's just they can't offload me until they know where the coil is! I assume LAVH means hysterectomy so getting palmed off with coil or the pill isn't an option? But if you're not happy i would recommend asking for a second opinion.

  • Hi , thank you for replying! Well when I told surgeon at my 6 week check up (and later my GP ) they both said it was healing pain! But it's the same pain as before and it's confusing as hell isnt it , I've been told a few times that there's no such thing as Endo that's inactive ( obviously since then else I would have said to them both lol!) I've made an appointment with a lady at bsge centre for 1st February I have to pay for it but hopefully she'll have some answers? Thanks hun xx

  • Good luck, and let us know if you get it confirmed that there is no such thing as inactive endo!

  • Thank you 😊 and yes I will!

  • You'll probably get told, even by a bsge surgeon you can't have endo after a hysterectomy but you can! Usually saying it's inactive means it's not causing any problems. As you can never be cured of endo if it isn't causing problems at that moment they often say it's inactive.

    I've had TAH and BSO and have endo still growing so am due excision with bsge clinic soon but it took me two years to get here as so many people just wouldn't believe me that I was still in pain and endo was still the problem.

    Good luck.

  • Thanks for your reply! Yes I think that's the thing, many times I have thought that the so called experts don't really know what they're doing, we know that Endo can grow and remain a problem even after hysterectomy as it produces its own hormones . Plus I think when they don't have the skills or knowledge to either excuse it or don't even recognise it in the first place they'll come out with the old "It's IBS causing this pain " or the "It's not active" rubbish. When's your excision if you don't mind me asking and were you told the Endo wasn't active too, previously? Did you ever get a definitive diagnosis or what did they tell you about your pain and/or Endometriosis? Sorry for the 20 questions! Thank you

  • I had diagnosis at lap for fibroids and cyst removal in Oct 2014 and that led to hyster in 2015 and I was told by General gynae that it would just die off now ovaries gone. Well it doesn't as we know so I fought and saw another gynae who said she was an endo specialists but not bsge and she burnt it off so no change in pain. I've not been told it's inactive but even bsge surgeon now says it might be when she gets in there! I don't believe her. But at least she is operating so I hope it will lower my pain. She is planning excision and removal of adhesions and then put barrier in to stop others forming.

    I don't yet have date for surgery and hope it's March or April

    Happy to answer any other questions. 😊

  • Thanks my lovely, well I hope your pain will finally be dealt with now , it's not on to be suffering especially after going through hysterectomy is it? I'm quite angry about that sometimes but then I think oh well it's going to be sorted one way or another , I mean I don't really want another operation but if it means this pain stops then so be it! I was told I had Endo years ago from my symptoms by my lovely gynaecologist at NHS hospital but the laparoscopy didn't go ahead because my BP was sky high and it was too dangerous to go ahead, but even then like you , it would only have been burnt off so I'd have been no better off anyway, it's total pants that we have to fight even in this day and age to get taken seriously and get treatment, I'm not anti men at all but I really think if men suffered like we do they would have thousands of top excision surgeons by now!! Xx

    ( just to add that when I went back for follow up once my BP was sorted I saw a female consultant who said my haemorrhagic cyst had "gone" - yes I know because I had the pain from it bursting!- and that the pain I was still in was " just ibs and you don't need to come to gynaecology for that , dear"...😢😩!)

  • Thanks. Well said!! I totally agree but not so eloquent.

    I'm so fed up of pain I'm having a really rough time at the minute and struggling to cope so am keeping everything crossed that surgery is soon and helps.

    I hope you get sorted too soon

    If youre on Facebook can I recommend you join a group called endo revisited Uk as it's run by Lindle from here and she too had endo after a hysterectomy.

  • Oh wow that's so funny - I just joined that last week! Thank you, and yes I understand, it's so hard to cope with sometimes isn't it , bless you I hope it's going to be soon for you , in the meantime hang on in there and know that I'm thinking of you xx Take care xx

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