No endo found - back to square one!!

Hi. Sorry this is a long post. I had my lap last Tuesday and it wasn't half as bad as I thought. I was a bit sore the first day but apart from that it was better then the pain I normally have to cope with. I was really surprised they found no endo. They said I had an adhesion where my appendix scar is and it was attached to my bowel. (This is the right and I have all my pain on the left) They cut this and said everything else looked fine. They showed me photos and said my POD had fluid in the photo but this was just the fluid they put in during the lap (not sure if this is true). I was only asleep for about 45 min and they said they checked everywhere. I'm really upset nothing was found I'm in pain today as I normally am and have no answers. I was seen at a general gynae but do have an appointment in feb to see a specialist so will push to get some help there. Is it possible to have endo deep down in your pod and for them not to check far enough?? It seemed my womb and ovaries were clear!! I know I should be happy they didn't find any but I'm still in pain and never seen to get any answers. I hate it when people (including family) say to me oh well it's probably just ibs and you can't have endo if you have kids!!!! I have at least 2 days a month where I'm screaming on the sofa and nothing helps. I also get a lot of pain with bowel movements and sex is unbearable (yeah I'm sure that's from ibs!!!). I get so much pain in my hip and down my leg I sometimes limp. Sorry for the rant I just want some answers and to start feeling normal. I feel so unfit and exhausted all the time I feel like I'm 90 years old. It's no fun when your 4 year old wants to run round the park chasing you and you can't run because you hurt so much. Please let me know if any of you have had the same situation and any advice xx

10 Replies

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  • Hi a general gynaecologist wouldn't necessarily recognise endo so when you see the specialist ask for another lap. As far as I know adhesions are endometriosis. Hope your appointment in February goes ok.

  • Shame poor you mummycox33 have just logged on to see how your lap went and saw this post, I'm sure General gynecologists are not always advanced with endo and they can miss it so I'd be asking endo specialist in Feb for another appointment for lap and hopefully you get some answers. I have my pre op on the 7th so fingers crossed I don't have to wait to long, feel for you so much as its so difficult and stressful Hunni sending hugs here I'f you need to talk xxxx

  • Thank you so much for your reply. It's just really frustrating I'm still in pain and not sure if it is endo and just been missed or if it could be something else. I just want some answers!! I will see the specialist in feb and hopefully try to get some more answers. Good luck with your pre op hopefully you won't have to wait too long for your lap ( I had to wait 2 weeks) is this your first lap?? Take care xx

  • I bet it's frustrating Hun, sounds like it's been missed and hopefully your specialist appointment in Feb will get you the answers you need, really hope you have a pain free month before your appointment in February keep in touch and speak soon xxxx

  • oh bless you. I had an appendix removal, told for years no endo. Found a year ago but saying old and inactive! still in pain, periods land me off work, and stupid bradford scale to contend with. I have been told contraceptive, or try for kids! Pain relief: trying to push me with gabepentin or amitryptline! both nah! find the cause I will take the medication! Good luck. Don't give up! xxx

  • Thanks for your reply. I know what you mean about the medication. The doctors just think they can chuck any med at you and you should take it. I have been told many times to just take painkillers continuous every day!!! When I don't even know what's causing the pain. We just have to keep pushing for checks and answers. It's just so exhausting. Take care xxx

  • Hi Emma-85 shame I also was told gabapentin was my last option after loads of different painkillers Hun, I was desperate to try anything for some relief after 5 admittions to hospital and seeing my gp weekly since September I have to say the gabapentin may me very sleepy to start with though that soon wore off and I now take 8 a day and it does work for the pain babes xxxx

  • unfortunately your gyne is probably not seeing the endo...it has several (6 or so) appearances and gynes are not trained to recognize them! I am glad you will be seeing a specialist because my guess is that you do have endo it was just not recognized...and this is why you had adhesions...if you've never had surgery what do they say is causing the adhesion formation? Here is a great place to learn more about this disease and also why your regular gyn should not be doing your surgery! I would bet a true endometriosis specialist would have found endo...

    endopaedia.info/

  • Thank you for your reply. I have read through some of the info you showed me and it's very interesting. I also think it was missed and maybe think I have it more in the pod as I have a lot of symptoms to point this way. I will hopefully be checked more with the specialist and be able to find an answer. Xx

  • Happy to help! I have heard of other women with the exact same thing happen and when they saw the specialists they did indeed have endo and it was excised and they went on to a happy life...I wish you the best! xx

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