Don't know what to think anymore!

Hi everyone!

I had my lap 4 weeks ago , the surgeon found endo on right ovary, behind left and stomach and bowel were stuck together by scar tissue. I saw the surgeon today and feel more confused than ever! firstly he said my bowel might not have been stuck together by endo it just could just have been coincidence and he said that the endo patches were small and mild. I've been in absolute agony for the past year with pain in my back hips and legs to the point where I'm having to get in a hot bath every 30 mins so I'm not in tears!

I know that how bad the endo is doesn't correlate to the pain BUT I told him the pain had come back as bad in the same place (bottom left back and hip) and I wasn't sleeping. He said it can't be a gynaecological issue as he has removed the endo so it must be something else causing the pain???! He said that the endo may come back but may not and there's nothing else he can do. I have a prescription for ibs but I don't have any symptoms which he admitted! Now he thinks it could be everything from a bad back to muscle problems? He's just treated me after having a year long period!

Seriously ladies I have no idea what's going on with my body. Has anybody else continued with symptoms after an op even though it seems to have gone? And what other wonderful diagnosis have you had when the surgeon is stumped?!

12 Replies

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  • Hi - the most common mis-diagnosis for the endometriosis (other than being in the head) is IBS. Your symptoms are exactly what I had - lower back pain, deep hip pain and sciatica shooting down a leg. My endo was in a hidden place that is usually overlooked by general gynaecologists called the Pouch of Douglas. Can you message me privately with the name of the consultant and hospital to check his credentials and whether he would be qualified to identify all the many presentations of endo.

    Click on my username and have a look at my post on endo and its symptoms to see what you identify with. x

  • Hello Lindle. I have similar symptoms to yours and I have a diagnosis of adeno (seen on MRI) and suspected recto-vaginal endo (not seen at lap by general gynae but endo specialist thinks it highly likely). I also have auto-immune issues (APS, Hashimoto's, IBS) and so the picture gets confusing as to what is causing which symptoms!

    Nevertheless, I've been offered hyster with excision and bowel resection if necessary with the best endo team in Barcelona but am concerned that the surgery will not relieve my symptoms if they are related to the other ai problems. Back pain, leg pain, bowel problems can all be a result of aps or hashimotos.

    I've done a lot of research and read many of the journal articles available on the subject of endo (there's very little on adeno!)

    but have found little support for the theory that endo is ai.

    It would very much help if you could cite some references (I have access to online medical journals) so that I can further my own understanding before I agree to major surgery!

  • Hi Jane - endo is now formally classified as autoimmune (see the link below) so all yours are linked by the same underlying genetic predisposition and faulty immune system. I guess you will have other family members with them - there are many for the immune system to choose from. IBS isn't one as it's a symptom based diagnosis and is often the most common misdiagnosis for endo.

    The upshot is that endo surgery won't cure the immune symptoms especially as you have other autoimmune conditions sharing those symptoms and there is no way of knowing if your endo might be causing some or all of your back, leg and bowel symptoms. But rectovaginal endo is a serious presentation as you will know that usually does causes all those sorts of symptoms.

    The critical consideration is that it can only get worse and however complex your surgery now might be, leaving it will almost certainly result in the need for more complex surgery down the line with more deeply infiltrating disease and more serious bowel consequences.

    It has to be your choice but I would see no option other than to have this surgery knowing you are in the best possible hands then reassess your symptoms after say a year.

    Have a look at my post on post menopausal endo/hysterectomy. The consequences of a hysterectomy will depend on your age. I assume this is proposed on account of the adeno which often found alongside endo as it is driven by oestradiol (the most potent of the oestrogens that is in force in fertile women). It is when the normal endometrium within the uterus grows into the uterine wall muscle. Will they be keeping one or both ovaries?

    I hope to do a post bringing together all the documented holistic measures that aim to modulate the immune responses in all autoimmunnity.

    aarda.org/autoimmune-inform...

    If endo comes up in faint print it's because I've clicked on it. Click on 'about AARDA' too and watch the video.

    x

  • Tha ks for your speedy reply! I do wonder though if the classification of endo as ai is generally accepted now or if it's just the american association that has rather summarily added it to its list...

    I have been following research on ibs and there is evidence to suggest some types may be auto-immune related (ai response to vinculin).

    On a more personal level, I agree that endo needs to be excised but I don't even know for sure if there's any there! So I'd be signing uo for hyster for adeno really. My worry here is that the implications of surgery could be worse than my present symptoms!!! I'd rather manage pain than urinary incontinence, for instance!! Yet I'm finding hard to get answers/statistics for post-hyst complications that are not from either pro-hyst or anti-hhyst forums (not the most objectve!)

  • Hi again

    AARDA comes under the National Institute of Neurological Disorders and Stroke, backed by the US Medical Research Agency (NIH) and the US Government Department of Health and Human Services. Most research throughout human history that has progressed medicine world wide has been carried out in the US.

    Sometimes something in science is obvious but has to be proved. A convincing paper was written in 2002 suggesting endometriosis as being an autoimmune disease but it couldn't be formally classified as the 'evidence' was not quantifiable. In order to be classified it has to fulfill a required number of criteria that are common to the disease class in question.

    After what will be years of intensive research by dedicated immunologists an evidence-based pivotal paper was published in 2012 bringing together evidence from over 130 published papers from leading immunologists and incorporating new research findings that examines the many factors required for a classification of autoimmune disease to be confirmed such as many common immune auto antibodies. Endometriosis now fulfills the required criteria.

  • Have you tried posting this info on the Endometropolis forum? There was a debate recently where almost everyone argued vehemently that endo was not auto-immune!

    Since many people are taking their info from there, it might be worthwhile opening the debate again.

    The only thing missing are links to actual articles! Can you provide any links? I looked on the aarda web but found none (but am on my phone...)

  • The debates you refer to do, I believe, involve Dr David Redwine a highly skilled laparoscopic excision surgeon but no expert in immunology. I have looked at what he has published on a website and it is very outdated and he admits himself is only based on guesswork so I've no interest in participating since I am happy with what I know to be true. I think people taking all their info from there (and I have had many tell me I am wrong on the strength of it!) should just think beyond what they are being told and consider what his area of expertise really is and which, in my view, he should stick to.

    The link is:

    sciencedirect.com/science/a...

  • Previously, my understanding was that it was suspected that endo is autoimmune but not proven. My feeling always was that endo is autoimmune so this information is really helpful. Thanks for posting. I will certainly pay a lot more attention to autoimmunity. Looking forward to your post on holistic measures!

  • Hi I had major surgery in 2006 to remove 2 'chocolate cysts' and didn't know i had endo until they operated. The Gynae didn't do a hysterectomy due to endo stuck to bowel and womb and might end up with a colostomy bag. So i was given norethisterone to stop periods inorder to stop endo build up, but now have an enlarged swollen 'pregnant looking' abdomen, I have been using this for 8 years now. Also i have pain constantly in the bowel as it becomes full, this is supposedly scar tissue due to removal of ovaries, ( i have 10% Of 1 ovary left to avoid early menopause). I do feel when i see the GP they don't really understand and we are only referred to a Gynae when an op is involved where as I would like to see a specialist to have my concerns answered.

  • I also have sciatica like pain and I was advised my my consultant that the endo is on my nerves that's why I'm getting the pain. She advised me they are unable to remove it from the nerves and its something im going to have to live with x

  • As Lindle has suggested, the first thing to establish is whether your surgeon is an endo specialist or not.

    There are many women on the forum who experience a continuation of symptoms following surgery. There could be several reasons: all endo not removed; post op adhesions forming; endo returning; presence of adenomyosis not visually seen during op.

    The poster AmyLeigh suggests endo on the sciatic nerve. This is extremely rare. Many women with endo report lower back pain, buttock pain and leg pain which follows the route of the sciatic nerve. However, this pain is more usually caused by something pressing on the nerve. With endo growing in the pelvis and organs getting displaced as a result it is easy to see how this would happen.

    I suggest you get a second opinion with an endo specialist and also try to find out if you might have adenomyosis. An MRI might reveal this.

  • Hi ladies, thanks for all of your replies, it's been a difficult day after feeling so disheartened and the advice has made up it a lot easier. I'm definitely going to get a second opinion and will update you with the progress. The research you have all done is amazing And making it so much better for us endo sufferers! X

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