Really bad lower back pain

Hi I was due to have a keyhole hysterectomy in April due to endometrial hyperplasia. During the op the surgeon had to stop because he found my womb stuck to my bowel due to endriometriosis which I never knew I had. He decided to treat me by inserting a mirena coil. It seems to be working but ever since the op I have been suffering from unbearable hot flushes. Also I have a retroverted womb and before my periods used to start I used to get a very bad lower back pain which went when my period started. Ever since my symptoms started with the hyperplasia I have had this pain and it wont go. I believe it is all linked. Has anyone out that had any similar experiences or had a hysterectomy when their womb has been stuck to their bowel. If so how did it go? I know I would have to have an open op rather than keyhole but I could cope with that but not this constant pain. Many thanks

14 Replies

  • Hi the lower back ache is probably due to bowel being stuck. This is more than

    likely rectovaginal endo. You could also have endo on the us ligaments which turn into the sciatic nerve.

    I had a TAH and BSO due to severe endo and adenomyosis. My bowel was like yours stuck to uterus.

    The actual op went ok but unfortunately it appears not all the endo was removed. So still in pain.

    If you decide to have surgery please make sure it is with a accredited surgeon at a. BSGE centre, as general gynaecologist is not qualified to deal with this and it would be against NHS guidelines.

    If you have any questions please don't hesitate to ask me.

  • Jean

    Many thanks for your advice. My gynae consultant (who operated on me) has kept saying this pain is nothing to do with my gynae problems.

    Because of this my gp sent me to muscoskeletal dept who has given me a thorough examination and x rays and mri and confirms it is nothing mechanical.

    Saw my gp again last week and he is referring me back to my gynae consultant in the hope he will take notice. I will bear in mind what you say re who operates as don't want to end up with a colostomy bag if I can help it.

    You have helped put my mind at ease. Thanks.

  • Hi please please do not let a general gynaecologist deal with this as you will be no better off. Please listen to Lindle as she really does know what she is talking about.

    When I had my op, which was with a accredited surgeon he promised to excise all endo, which I know know he didn't. So you really must research the surgeon as some are better than others.

    I'm don't want you to end up in my situation and having to seek a second opinion to get the help that you deserve. Because you deserve the best Hun. Take care. I'm here if you want to talk.

  • Hi Jean

    Thank you so much for your kind words. I have found a hospital near me that has a specialist unit so I will wait for an appt with my gynae as I am still under him for hyperplasia and will do alot of research between now and then now I know I am not going mad reading all the replies I am getting. That in itself has made me feel alot better! I will go armed with lots of info and ask to be sent to this other hospital.

    Many thanks for your advice.

  • Hi there, I have exactly the same issue and the same pain. my surgeon is happy to remove my uterus from my bowel and do a vaginal & keyhole hysterectomy.

  • Hi

    I feel for you as the constant pain is very soul destroying isn't it. I am sorry to hear you have the same problem but am glad to know someone else has it. I was beginning to think I was going crazy when my gynae kept saying it was nothing to do with it. You have given me hope and the drive to stand my ground when I see him again.

    Good luck with your op and hope it all goes well.

  • Wiltedandbewildered - Oh my goodness, you must avoid this at all costs. Separating these structures will do just that. They are stuck due to scar tissue (adhesions) and these don't come from nowhere. They are the consequence of the inflammatory process of endo that can be buried several centimetres beneath. A hysterectomy is no cure for this as the disease will be left behind. There has just been a detailed discussion about this on the facebook group I have set up - EndoRevisited UK Support Group. There is lots of info on there as to how to get to proper care.

    This is an extract from an article written by Jeremy Wright, the excision surgeon who brought the concept of endocentres to the UK back in 2008. It describers exactly what your surgeon proposes to do and how it will not have any effect:

    'Many clinicians view obliteration of the cul-de-sac as an adhesive process only: the colon is stuck to the back of the cervix and it must be unstuck. The important consideration for surgery is that the adhesive process is the result of inflammation from underlying invasive endometriosis. This invasive endometriosis involves the uterosacral ligaments, posterior cervix, cul-de-sac, and usually the anterior wall of the rectum. Accordingly, surgeons who treat only the adhesions will fail in any attempt at treating the disease. Some surgeons may observe obliteration of the cul-de-sac, describe 'dense adhesions' and attempt to dissect the rectum from the cervix to 'restore normal anatomy'. Such treatment completely misinterprets the pathology and leaves 100% of invasive disease behind as well as a broad, raw area extending from the posterior cervix and down across the cul-de-sac and on to the anterior rectal wall. The depth of invasion associated with obliteration of the cul-de-sac can extend several centimetres beneath the visible surface, and just because this is not visible to the surgeon's eye does not make it acceptable for the surgeon not to think about it. This depth of invasion makes thermal ablation techniques, such as laser vaporization or electrocoagulation, inappropriate choices for surgical treatment.'

  • Hi Lindle

    I have just read the post you put on for Wiltedandbewildered and found it interesting. The back pain I have got is constant and affecting my life greatly especially as I am a full time carer for my husband. Added to this I am waiting for a genetic test to come back as I have found out there is Lynch syndrome in my family. If I am positive they reccommend a hysterectomy but I have found out the hospital which I am under for genetics also has the specialist endo unit.

    I will in the meantime do alot of research based on your post. Thank you for si much information.

  • I meant to draw your attention to that reply but got side tracked! I assume the hyster would be to prevent the risk of endometrial cancer. But with the bowel and uterus adherent to each other with retroversion this strongly suggests rectovaginal endo. In any event whether you need the hysterectomy or not I strongly suggest you seek referral to a centre. x

  • No problem! I read it anyway! I understand what you say and definitely will get referred to a proper centre. You are a fount of knowledge thank you for your advice.

  • Hi Rigamum Jean is right. One of my main symptoms is severe back pain. I have been diagnosed with stage 4. It started two years ago and it was treated under my gp as a musculoskeletal problem. Because of this I had 18mths in agony spent £100's of pounds on Osteopath and Chiropractor treatments saw physiotherapists all to no avail. I knew it was linked to my cycle but getting someone to listen was not easy. Do you have other symptoms, pain with sex, bowel movements or urinating? With Endometriosis we have to be our own advocates, as general gynaes, gp's know next to nothing about the condition. For your gynae to say your uterus attached to your bowel would not cause back pain is ridiculous!!! This on its own is indicative of an obliterated pouch of douglas, which immediately means you would have stage 4 Endometriosis, the most severe. You have dodged a bullet by him not trying to treat the problem surgically as he is not qualified to do so. What he should have done, but you will need to do for yourself is go back to your gp and ask for a referral to a BSGE centre, have a look for your nearest centre. Also look at Lindle posts on the treatment pathway and endometriosis on the uterosacral ligaments and see if you identify with what is said. I had to print out the NICE guidelines on the treatment of Endometriosis and take it to my appointments as the medical professions I was dealing with were unaware of the correct treatment pathway.

    Good luck x

  • Hi Brizzlebird

    Oh thank you so much for your reply. I have felt as though I was going mad about the back pain but to find others out there in the same boat has made me feel so much better. I must say my gp has been better than my gynae as he has said I know my own body. I asked for tests to rule out other issues which it has.

    All the replies have given me hope. My gp has already written to my gynae and as I am still under him for my hyperplasia I will go armed with info. I have found out there is a hospital nearby that has a specialist unit so will ask him to refer me there. I don't get any other symptoms other than constipation and pain when going. Thanks so much for your advice and help.

  • You are welcome. I think we have all been made to feel like we are going mad before being diagnosed, and sometimes after! I know I did. Great that there is a centre near you. I hope all goes well, keep us posted x

  • Will do thank you

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