Just a quick question, is it possible to have endo but a laprascopy shows nothing?
I'm certain its endo on my bowel but my new consultant won't do a laprascopy as one was already done with a previous consultant and showed nothing. Can they miss things or am I barking up the wrong tree?
My GP advised that endo can be microscopic and invisible to the naked eye but still cause a lot of pain. I guess if they can't see it, it won't be removed during a laparoscopy xx
Yes endo can cause severe pain and be a mild case .
The amount of pain is not a true diagnosis of your condition.
If your in a lot of pain who cares what the dr sees in exam .
I had that DX.
I ended up not being able to
Have another baby .
I wish I knew what I know now .
Again go for the invitro forget about treatment surgeries and meds they don't work .
Have your babies first then decide later what you want to do about endo .
Tbe baby thing is huge
Take first steps first
Was the consultant who did the laparoscopy an endo specialist?
Endo can be missed by lap.
My first lap was clear which made it doubly hard to get a diagnosis. I later got a copy of my notes for that first lap and found out a few things:
1) I was in theatre less than 10 mins.
2) They only made one incision for the camera and a tiny hole for the gas. This means they couldn't move anything out of the way to have a proper look around.
Several years later when he was diagnosed and I was having a lap by a specialist, I understood why it had been missed. The specialist gave me a DVD of him treating the endo - at first I just stared at the screen thinking "there's nothing there" but when he started treating it I realised what was happening. I had endo that looked like yellow or clear blisters and they were all over the place, so much so I couldn't see it.
Between the poor job they did and the difficulty in seeing it, only a specialist would have noticed it - it didn't fit the usual presentation and I'll bet the gynaecologist who did my lap didn't know what to look for.
Your first lap result may be correct but it you have lots of endo symptoms its very possible that you are in a similar situation to me.
As a result ideally you need a referral to an endo specialist. They are few and far between so you may have to travel. You should be able to get an NHS referral in theory but it may be hard to convince your GP if your last lap was clear.
You could ask for a CA-125 blood test. This CAN indicate endo as well as lots of other things - it's basically a test that shows there's inflammation and issues in the abdominal area. Not everyone with endo tests positive for this marker but it could be worth a try. Note, it's also used as an indicator for ovarian and other cancer but it definitely doesn't mean that. If you do get a raised level it may be easier to push for a referral,
The only way I got my diagnosis was by making a nuisance of myself every time I was in agony. I used to regularly pass out and when I'd come round someone would've called an ambulance and I'd get rushed in. I kept asking; what's causing this? What's wrong with me? This led to some nasty comments in my notes (pain is either a cyst or psychosomatic; should see a psychiatrist etc) but eventually a gynae listened and did another lap. Thank goodness. Hope you get some answers x
Hi, yes absolutely! My first lap was clear, however a year later I went for another one at a different hospital (after exhausting the bowel route - colonoscopy etc) and I was diagnosed with moderate endo. My third lap also showed more endo and I was then also diagnosed with adenomyosis. This was done by an endo specialist. Finally my most recent lap didn't show up any active endo but lots of scar tissue which is likely to be causing a lot of my pain.
Don't give up, something is causing your symptoms so keep asking and if necessary nagging...it is your body and you know when something is wrong. Take care and good luck x
Yes, definitely can be missed. I had a diagnostic lap with only1 incision by a fairly old gynae (he retired within the next 6 months after that) and he said there was no endo,just lots of scar tissue and patted my knee and said no one was talking about anything like being a bad girl and not to worry and if the pain got bad they would divide the adhesions and put me on course after course if metronidazole (nasty). I later discovered he'd written in my notes I have pelvic inflammatory disease and the likely cause was an std, which made it so hard to get a doctor to take me seriously when it all got worse. And I had no idea that that was what they were all thinking about me. Eventually after making a nuisance of myself I got a federal to a different gynae who did a lap just to make sure before he referred me to gastro, and he was surprised to find I had extensive endo, my reproductive organs were adhered to my right abdominal wall, and included pouch of Douglas (hence bowel ly symptoms). I figure that first time it was just too early for an old generalist like the first gynae to spot .., I've read since that early deposits can be clear or yellow and he definitely said he was looking for the "gunpowder burn lesions".
Find a specialist. Look up accredited endo centres or provisional ones near you and request a referral. My CCG won't send me to my nearest centre but I could go to one of the lead consultants at another Hosp .... So that's what I did this time. I hope it works out!
I would like to know this also as a private dr examined me & thought he felt thickening on pelvic ligaments however after 4 month of decapeptyl followed by a lap mine came back clear also. Op was done on nhs but had faith in them. Not sure if the decapeptyl stopped it from showing. 2 months after surgery and all my pelvic pains are back with a vengeance.
Thanks for your replies, its made me more confident on a pushing for answers. Just another quick question, does anyone experience labour like pains triggered by bending over or twisting a certain way? I get it quite a lot and it lasts for an hour then afterpains that lasts for days. Is it part of endo or something completely different? My womb area just naffs me off, so much pain with no answers. And docs are useless, I've had everything thrown at me but nothing works 100% just dulls it a bit, like depo-pravera and two different pills. I even had buscopan thrown my way. Completely wits end here.
Both me and my daughter got what I think you described .
I'm 62 now so most pain is gone but bowel issues continue .
I'm told they want to do a colonoscopy to check for cancer .
So far I have refused .
Like I told them " your doctors have been there before and I'm still suffering the effects"
We both get what my daughter calls " tire pain "
It'd like a strong grip inside tightening around your middle like a snake .
It will double you over .
I used to get it . I always felt right before it came on.
For me it lasted a couple minutes .
For her I think maybe longer .
My guess is it's endo bursting or stretching inside or an adhesion pulling apart .
The adhesions that it causes are far worse than the disease and can have severe consequences .
I don't know of anything that really treats adhesions.
They should have come up with something by now because it's a problem millions of women face .
My first lap was negative six years later I've finally managed to get a doctor to refer me to a endo specialist and what a diffrence he listened I'm booked for an MRI next Tuesday to check for andeo and laporoscopy in the next few months. He said exactly what the others said a general gyne does not specialize in endo so it's easily missed I also believe my op was rushed only had two incisions so how can they move things around. Keep pushing I been told it's all in my head by one doctor!! Just remember you know your own body better than anybody else x
Hi I had this issue I had a laparoscopy last July to see what was causing my pains, no Endo was found. They found that my fallopian tube was attached to my bowel. I opted to have my fallopian tube removed,even though 2 consultants told me the attached tube probably wasn't the cause of my pain. Thankfully I did as they found endometriosis under the fallopian tube. So good to finally have diagnosis, after suffering for 18 years.
You were right to insist .
Some doctors have a problem admitting it's endo .
It's so common that more women have it than not .
Often the bowel and cul de sac area are the places it's found the most .
Hopefully your other tube is clear and you'll be fine .
Keep your digestive track moving at all costs
Just had my 2nd lap and they found two bits of endo which they burned away. So so happy right now that I finally have a diagnoses and a massive thank you to everyone who replied to my message. I no longer feel like a hypochondriac. Although I will still battle with depression, at least I now have a name for my pelvic pain. Thank you all. X
I would also like to add, I was menstrating during the op which helped doc to see endo. I thanked my lucky stars. Also they shud invent something to bring on menstration during op so that many women aren't going through countless years of pain and negative op results.
Yes it can be hidden behind organs.
And don't forget all doctors are not experts and a male dr won't care mostly
Find a good female dr who cares and had knowledge .
There are lots of things that happen wifi the life long disease of endo .
And having a dr who really cares is a must
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