Hi I had appointment at UCLH yesterday with high hopes but now very down and confused. I was originally diagnosed with stage 2 endo in 2006 with private lap. Used to feel like I was having a baby with bowel movements and sure enough had endo on pouch of Douglas and rt utetosacral ligament plus adhesions. Had another private lap last march cos of continuing bowel problems. Found diffuse endo and put in mirena. Insurance co. won't cover me any more. Still finding it very hard to pass a motion, constant tenderness in rt pelvis. Was sure must be adhesions. GP put me on movicol.
Saw very nice nurse in clinic then had internal ultrasound scan which was very painful as they pressed on my tummy to try to get bowel out of way. It was very full even though I'd managed to go a little that morning. They said I had adenomyosis and benign cysts on lt ovary and that my rt ovary was stuck to bowel. Then they told me to lie there while they got colleague. Waited nearly 10 mins alone and wondering then a male dr can in and repeated scan very roughly. He said he was 'sceptical' as I was feeling most of pain from hand pressure rather than internally and that there wasn't any endo seen on scan or adhesions. Feel totally confused. Thought endo couldn't be seen on u/s scan? Can adhesions be seen? Nurse says she will speak to gynae consultant but perhaps I should get stronger laxatives from GP. Why will they not check the cause? Feel so low , have no libido xnd feel do yucky with brown gunk half the month with mirena instead of period for which I could use a tampon. Feel so tired and fed up. I am very blessed to have 3 kids but feel too depressed to be much use to them.
Sorry to go on, any advice would be great. X
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synnova96
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Bless you, I did have it straight from a Sonographers mouth that Endo will not show up on an Abdo or Transvaginal scan.
You really need to pressure your Doctor for something for emptying your bowel, or you could end up with an extremely compacted bowel and back in hospital. Am sure you know lots of fresh fruit and veg will help, also prunes, and fruit juices. Apparently Pineapple juice is an anti-inflammatory which might help. Am drinking some now.
I would also look into a second opinion, giving all the information you have above.
Sorry I can't make you feel any better, but sending caring thoughts xxx
Oh that's odd. How recent were you told that endo would not show up on scan? I was being seen by a gastroenterologist due to my IBS type symptoms last year and endometriosis was only spotted due to my first abdominal ultrasound scan - a large endometrioma, ovarian cyst. I then went to a specific gynae for a transvaginal scan and it was then where all the rest of it showed up - stage 4 endo, both ovaries stuck, hitched up bowel loads everywhere etc. This was in September 2012. Could it be that recent technology allows endo to be spotted by ultrasound whereas before it didn't?
So sorry you feel so rubbish. My advice would be to not stop asking for clarity until you are clearer. Eg, your ovary is stuck to your bowel? Follow this up and keep chasing for the solution.
Endometrioma Cysts will show up, if found, because they are filled up with solidy sticky dark old blood, and that is a major clue you have got endo, but not everyone with endo has endometrioma cysts by any means, so it is correct to say that regular endo lesions which is where endo bleeds fresh each period, will not show up on any scan, MRI, US or transvag US. It just isn't big enough or thick enough to appear any different to regular organ walls.
Nor is every cyst an endo cyst either, as every time you ovulate to release an egg it comes from a cyst, these cysts are very common and are flled with clear liquid and are 'clear cell cysts'. And our bodies grow cysts in all sorts of places for all sorts of reasons.
The other element of endo damage is adhesions and these in themselves do not show up, but
if they have stuck your organs together, kinked or distorted their shape etc as adhesions do because they are like superglue, then finding organs stuck in places they should not be is also indicative of endo, but not exclusively because anyone can get adhesions from any surgery, injury or other diseases.or trauma regardless of sex or age of the patient.
The only definitive way to confirm diagnosis of endo is through surgery, and anything which hints at endo before that is classed as 'suspected endo'.
stage 4 endo is to do with the depth to which the endo has invaded other organs and again it is surgery which confirms the depths to which the endo lesions have invaded the walls of other organs.
Hi Hun try asking for GP for Laxido. Movicol wasn't any good for me. Laxido is brill. I take two sachets in the morning and two and night (I've suffered with constipation now for nearly 22 years and tried all sorts of things to help me go, fruit, prunes, fibre, laxitives etc). It really helps me go. I hope you get the answers you so need soon. Take care xx
Hiya, I have endo stage 4, had it surgically removed then went for a radical hysterectomy but they discovered when opened me up that all my organs are stuck together and they couldn;t remove the womb without the bowel, bladder etc. so stitched me back up lol. I have constant constipation and have had several obstructed bowels because of it, I no take 1 dulcolax laxative every night (you can buy it or get on prescription) and i go every day, also my bowel guy told me to avoid fibre, fruit and green veg, not very healthy I know but these things cause my constipation, all the years I was eating brown bread, fresh fruit and loads of veg, now I don't and my bowels and bloating are vastly improved, unfortunately, i think i will have to stay on laxatives for ever as this isn't a condition that can be sorted. hope this helps a bit.
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