Is it endo or not

I have endo on my bowel and lots of other areas but I get pain on my right side does anyone-else have it here as everyone seems to say they have pain on the left side. Ive already had a colonoscopy and sigmoidoscopy so I know its not inside my bowel, I have also cut out all wheat and gluten foods but find I get the pain more when sitting down. If I lie down its a lot easier. My gastroenterologist thinks its endo and my gynaecologist thinks its something-else. I feel like im just getting pushed from one to the other.

I am having an op in December to remove right ovary, parts of endo off bowel and both ureters

14 Replies

  • You can get what is called referral pain. When I first started with endo symptoms my pain was always on my right, wen they operated they found the endo was on the left and vies versa with the second op. It all depends where the nerves run

  • Hello. All my pain is on my right. I've never had a single period pain on my left. I have endo on my right ureter, close to my bladder so get pain in my right groin when I'm due/on my period. For months my GP told me it was IBS before I got a referral. I also have endo on my right ovary and falopian tube, the outside of my bowel and in my pouch of douglas.

    I also get pain in my right thigh and right lower back.

    Good luck with the op and getting it all figured out xx

  • Hi,

    I suffer with endometriosis of the diaphragm and get terrible pain in my right hand side and shoulder. The pain is always on the right. I've recently found it creeping down my right arm too. I can't have an operation as it would be open chest surgery and am not up for that! Sorry to hear your suffering with pain too. I find it cripples me sometimes and hard to explain the pain to others. Maybe speak to your consultant about diaphragm endo? Worth ruling it out.

    I have tried endometriosis diet to manage symptoms but it doesn't help with the right hand side pain. Pelvic pain has improved over time but only after major surgery.

    Wishing you all the best for your surgery in December. I hope you feel a lot better afterwards and live pain free.


  • Sorry to hear what you are going through too. Funny you should say that about your right arm as for about 3 months now ive had a pain in the underneath part of my right arm but kept thinking it was a muscle or something, now im wondering if its the same as you. I will definitely start asking more questions.

    I too have cut out foods that make endo worst which has helped in my pelvic area but never in the right hand side pain. No amount of pain killers ever help it there.

    Many thanks and good luck

  • Can I ask Shez3009, do you get more pain when sitting down than when walking or laying down as this is my biggest problem x

  • Hi Nicolajones63,

    The pain is definitely more noticeable when I lay down or sit. I wonder whether that's because I'm generally more relaxed when sitting and notice the pain more. Recently, following failed IVF, the pain has been a lot worse in my diaphragm and am aware of it when walking.

    All so unfair that this disease can cause such havoc and so little is known about it. My family and friends were so shocked when I told them about the endometriosis in my diaphragm. Who'd thought that was even possible?

    Just hope you get to the bottom of it xx

  • Its endo on the OUTSIDE of the bowel. When will they learn???

  • Hi

    i have a lot of pain in my right side, my right ovary is adherent to my pelvic wall so don`t know if its down to that ? also get pains like sciatica in my right side to.

    i had a lap in august and they found stage 4 adhesions fusing my bowel to my uterus and my pouch of Douglas (pod). she also found a nodule which she has tested on my bowel.

  • Sounds really unpleasant. How many ops have you had so far? Do you still have the left ovary? From lots of experience ops to remove endo from my bowel, bladder etc simply resulted in recurrence. Please do not do what I did and listen to men who simply dont understand. I had 10 years stolen from my life while I underwent one operation after another, took what were then experimental drugs which are no longer used and racked up 5 massive surgeries. Aged 33 I almost died because a huge chocolate cyst blocked by bowel and blladder. I was too ill to operate on and had the additional problem of multiple adhesions caused by too frequent surgical interventions. Gynaecologists argued with gasterentologists endlessly and hopelessly.

    I am sure I will be put down in this forum for advocating total hysterectomy but how I wish I had the whole lot done in one go. Endometriosis of the bowel is hell. The dragging sensation never gives you peace and nothing helps. I had every bowel test imaginable to visualise the INSIDE of my bowel- it was all on the OUTSIDE of my bowel.

    Fight your corner. ASK QUESTIONS and dont be put off. Its your body and you are struggling to get help and cope with it. I know. I listen now to any advice going then filter it through my 40 years of experience then I decide.

    Wish I could be at your side to help you more. You will come out the other side

    We need a CZAR for women suffering from endometriosis.

  • So sorry for your pain Hun I two suffer from only right side pain so have found a lot of you lovely people replies. I was prescribed diazepam for the siactic pain charlie67 I have currently been on tramadol, paracetomal, diclofenic and diazepam every for hours for a week to see if there is any impro men to my pain which there is not so going back to see gp at 5.10 tonight I'm getting so fed up with the constant pin I've had for the last four weeks. So I'd say it was endo that's causing it poor you xxxx

  • I have the same problem with doctors arguing between themselves. Gastro say its endo, gynae say its something else(not that they are saying what). They don't want to do a hysterectomy as im on the edge of going through the change but id rather just get rid of the lot, although I have heard that taking HRT can make it grow back more aggressively, but I think its worth the risk. Im just praying I get back to some normality after my op in December and yes I still have my left ovary.

    Thank you to all of your kind comments, its nice when we can all help each other and I agree we do need a Czar for women suffering

  • Hi I also have right sided pain which sounds similar to you, I've been diagnosed with adenomyosis which causes right sided pain maybe worth asking if you might have it as well.

  • Hi what is adeonomyosis ?

  • Yes I had terrible pain on right side for years . I started my periods at 9 years of age and from day 1 , I had pain on right side heavy periods clotting and vomiting as soon as I tried to move. I had lap done at22 and then again at 26 years of age when they stope d my periods altogether I was put on danazol 300mg per day for 14 years until I had a full hysterectomy with both ovary removed that's the first time I did feel better but I still have pain on right side when I over do things I lost my job in council offices after 15 years because of endo . I Called my pain my phantom pain for all those years as no one believed me I had it. I went from 7 stone down to 4 stone 9 in 6 weeks , when they told me they had found severe endo in stomach, bowels bladder and pelvic area I was delighted because at last they believed me but I was the first person in South Wales to be diagnosed with endo. All medical staff were very interested then.l really hope they can make life better for you soon as I know to we'll how you feel good luck Anytime you want to chat or just have a scream I am here for you.

You may also like...