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?!
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Ollie1390
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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
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!
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!)
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...)
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!
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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