Hi ,

I would just like to thank Lindle for her support, information, links on this website. I'm an endometrosis warrior. I like Lindle have gone for years and years with misdiagnosis I was eventually diagnosised in theatre with endometrosis stage 4 . I was in such a mess my planned laproscopic hysterectomy turned into an added appendicectomy, bilateral ovary removal in 2014. I have endometrosis still flaring up in my right iliem and I get lower back pain, they think I have ovarian renemant on my bowel. I take an oestrogen blocking agent and livial hrt. Thanks to Lindle I went armed with my facts and addresses and I have now been referred to an endometrosis centre. I'm 46 years and my fight against this awful disease is ongoing.

17 Replies

  • Hi there Ive also had a hysterectomy and excision for severe RV endometriosis. I've been advised by Lindle also that the oestrogen based HRT isn't a good idea but every GP / my Endo specialist / endocronologist recommend it. I'm interested to hear about livial HRT. Who recommended that? I'm 47 and my recent return of back / groin pain suggests my Endo is flaring up. But who to turn to when GP is clueless and endo specialist says take Oestrogen based HRT.

    Sorry to hijack your post with questions just keen to know who you see or do you research and ask for what you need?

  • My gynaecologist at my local hospital prescribed it. He has quite a bit of knowlege re endometrosis and did advanced laproscopuc surgery on me in 2014. I think he does training on laproscopuc surgery. Livial is a non orstrogen based hrt which mimics your own body hormones.It contains a substance called tibolone. Your body breaks down tibolone to make hormones.It's effects and benefits are similar to hrt. I then take synarel as my gynaecologist is wondering if I have ovarian renemant left on my bowel. I've asked fir referral to an endometrosis centre mainly for the bowel/right iliac fossa pain. X Mel

  • Thanks for your response. I'm also keen to have colon/rectal issues investigated! How's your pain? Mine is in groin area and lower back and travels down leg and up back - making me stiff and hard to walk / stand. How about bowel issues? The things you get blasé in talking about! I'm keen to avoid more ops at mo as so poorly post 2 ops last year so hope that investigations can be done via MRI or colonoscopy.

  • Mines right sided iliac pain and pelvic pain. It has been going on since November. It did ease up a bit but this last week it's back to cocodamol, hot water bottle at night. I have got a high pain threshold so just take paracetamol in the day but it kicks off at night. I get a lot of flatulence, bowel habits anything from loose stools to constipation. Having my bowels open helps sometimes. It feels like pre period pain but I haven't got a womb. I had a ct scan at xmas as surgeons thought I had a bowel obstruction. Previous to that I was sent for ultrasound scan for rectal bleeding the other year. I just want them to know what they're doing !!@ endo can be picked up on mri scan and laproscopy, deep infiltration on colonscopy. Not had any of these tests yet. Previous to last major surgery in 2014 I had only had an ultrasound scan 9 months previous. Hence I'm worried re pain and treatment plan.

  • Yes just want to find someone who knows what they're doing. So agree. Our bowel symptons sound v similar.

    I had excision then hysto with endo specialist. My endo was identified on MRI but I still have no clarity on state of bowels/rectum except report from gynae endo expert that externally bowel all looks clear. I'm considering asking for referral to endo colon rectal specialist. It's such a long process isn't it with no guarantees. I've also been told permanent stomata are v rare.

    All the best and good luck

  • Lindie is a wonderful lady who has helped woman about how to get refered to specialist centre i was dignosed with aheadions on pouch of Douglas and endometriosis in my womb it is a awful diease and I don't know how I would of got there without lindie support so big thank you to lindie who has helped all the woman on here xx

  • It's a blessing for us to have Lindie,she is very helpful,Thankyou for all your support.I am still waiting for my hystertomy date.

  • Yes Lindle has messaged me and helped me a lot with her knowledge. I feel that once my synarel stops in August I'll be back to square one. I'm still getting right sided pain which is concerning. Due to having extensive surgery in 2014 I don't think all the endometrosis was removed. My ovaries where stuck to bowel ad wrapped around appendix. My main concern is my bowel. If I'm going to have another laproscopy I would prefer a colorectal surgeon who has some experience with endometrosis. The centre I'm being referred to has only a few patients requiring a stoma and then it's reversed. This is what I'm trying to avoid, just want my bowel to be okay. Not easy to digest all the info on this "Unknown" disease. I certainly didn't know much about it until diagnosed. X

  • Lindie sounds like someone I should know, is she on this forum?

  • If you click on Lindle's name further on down in the comments it will take you to her page with lots of information. Treatmen plan pathways etc, endometrosis centre link ups for your area.

  • My thoughts are with you.

    I'm saddened to hear what a dreadful time you've been having.

    But I'm sure you're now in good hands.

    Best wishes with your ongoing treatment. Certainly Endo centres are the only way forward.

    I also took 20yrs to be diagnosed. Endo now severe ..stage 4 . I feel it's so important not to be fobbed off by Doctors or general Gynae.

    Hopefully this will all change now with such forums and excellent work and guidance from Endo Warriors like Lindle and yourself. Xxx

  • Yes. Ithink she set the forum /group up. If you look on her page she had all the links you need re information/ links to endometrosis centres near where you live x

  • Thank you so much for the kind words. It means so much. I'm glad things are hopefully moving forward for you. Apologies to those who are waiting for replies to messages but I have been struck down with allergies for the last two months and it lays me flat and my eyes and brain cells sieze up. So all is slower than usual but I'm gradually working my way through. Xx

  • Sorry to hear this Lindle. You really are a great help to a lot of people on here. Hope you feeling better soon. X

  • Hope you feel better soon. We all really do appreciate everything you do to helps . You deserve a medal ,especially with everything you've gone through. Thank you.

  • Thanks Jean and ladies but please don't worry about me. I just wanted you all to know why I haven't been performing at my best just lately! xx

  • But we do worry about you. You mean more to us than you realise. So many of us would be lost without you.

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