Bad day at the doctors--they think I'm silly for being worried about it spreading to other organs. According to them, that's a lie the internet made up and that any woman who claims it happened are lying, but I highly doubt that's the case.
It feels like they're making me feel stupid for being worried about such a thing, like I'm either an idiot or crazy. I hate to say it, but there is some relief in knowing that some people out there are getting the same frustrations with doctors as I am, but it doesn't take away my concern for what this could progress into.
I'm hunting for a better doctor, but it's a matter of appointment days arriving and finding out where else to go if/when that doctor does the same thing. I'm limited on who I can see because I'm on medicaid too.
I'm kind of ranting and curious of what others have to suggest to debunk the claim that endometriosis can't spread to other organs. The depression is really getting to me, but I know that my overall mood will improve greatly once I know that I won't have to wonder or worry where it'll start growing and think that I'll be ignored if it turns into cancer or finds another way to kill me indirectly.
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jcrawford
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Hi, what a load of rubbish your doctor is spouting! I'm fed up hearing supposedly qualified professionals saying ridiculous and incorrect things!
I have just had major surgery for endo (6.5hrs long). Endo had spead to my ovaries, bowel, bladder, pouch of douglas and peritoneal wall.
There are many well documented research papers on Endo and the organs it can and does effect. I would suggest printing off one of these articles from a reputable source such as an online medical journal or scholarship paper and give that to your doctor to help educate him!
I hope you manage to find another doctor who is prepared to listen and research endo before opening their mouths!
Hi your doctors sound like they have no idea what they talking about. I feel your frustration Hun and find how they are treating you very disrespectful and hurtful. You need to find or speak to another doctor.
It can and it does spread to other organs I have it around my bowel , bladder and maybe even my kidneys.
I wish you luck Hun. Xx
Grrr..so frustrating and unacceptable given the amount of information that is out there. i swapped doctor a couple of years ago because I was fed up being treated disrespectfully and berated for not choosing the chemical treatment offered - good luck with your hunt for a new doctor, for me it made a great difference!
According to most endo experts and researchers endo is present from birth and will grow in the places where it was laid down. Therefore, endo cannot spread, as such, but rather very tiny lesions of endo which are missed at lap or which are not properly removed by excision might seem like new or spreading disease but, in fact, it isn't.
This is the latest and most accepted theory, and successful surgery by an expert should limit the chances of endo growing again because a good surgeon will be able to spot even the smallest lesions.
So, you are right to be concerned that lap will not solve the problem indefinitely especiallly if the surgeon is not highly skilled at identifying tiny lesions and removing them completely.
On the other hand, endo does not technically spread; the problem is that GPs and others have taken this information and misinterpreted it, giving them justification for dismissing iur worries and concerns.
Hope this helps. Also, try posting on Endometropolis. There are academics and clinicians on there and the women are generally very supportive and knowledgeable.
I've also heard that endometriosis can grow in different shapes, like growing deeper like a root instead of bulging like a chocolate cyst and that some are microscopic or can be easily mistaken for something else and thus overlooked. I don't know, but as far as I can see, there's still a lot left for the world to learn about it.
Agree they are talking bullsh*t. I have endo on my bladder -100% confirmed and diagnosed by an advanced laporoscopic surgeon gynae consultant during laporoscopy.
You should complain about that doctor as they clearly don't know what they are talking about and are not competent enough to advise you.
Your 'doctors' are 100% incorrect. Endo can be found anywhere within the human body both female and male (rare). However, unless you have symptoms outside the pelvic area it's unlikely that you have endo elsewhere. It can certainly be found on the bladder, the bowel etc. and these sites are common but endo in the lung for instance is rare.
Here is an excellent fully referenced article that will educate your doctors. endo-update.blogspot.co.uk/... However, do you really want to be in the care of people who know nothing about your condition? As you have mentioned finding a new doctor, that is what I would encourage you to do. At the same time, try not to get hung up on it manifesting elsewhere in your body and scaring yourself about something that is very unlikely. At least it has served to expose your doctors' ignorance so it has been useful in that respect. The important thing to do is find someone experienced in endo.
I think you are in USA or Canada otherwise I'd direct you to the UK endo centres.
So sorry you're having such a bad time of it this sounds like the standard fob-off from the doctors. I have stage 4 endo in several places (inside & outside of bowel, uterus, ovaries, rectum, fallopian tubes, abdominal wall & outside of bladder, as well as endo & deep scarring in the pouch of douglas, polycystic ovary syndrome, adenmyois & adhesions) & there are alot of concerns that it is starting to spread to my kidneys, inside of bladder & urethral tubes.
Please don't ever let them make you feel like you are over-reacting because whoever told you that it is a lie/impossible has absolutely no clue what they are talking about! It's vile the way some of these so-called "professionals" treat women like us- it makes me wonder why they became a doctor if they don't want to help people. You need to see someone else hun- & make a complaint about that moron who treated you bad xx
Your doctor is full of sh*t. First lap I had they found it on my bladder and left ovary, second lap they found it in the pouch of douglas (right between both holes) and my 3rd lap last week they found it on my duodenum. It's like it's going frickin sight seeing in my abdominal cavity. Half the fight with this crappy condition is being believed and taken seriously by health professionals who can make us feel crazy just for being persistent with our concerns. Good luck with finding a doc who knows their arse from their elbow : )
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this sounds like the standard fob-off from the doctors. I have stage 4 endo in several places (inside & outside of bowel, uterus, ovaries, rectum, fallopian tubes, abdominal wall & outside of bladder, as well as endo & deep scarring in the pouch of douglas, polycystic ovary syndrome, adenmyois & adhesions) & there are alot of concerns that it is starting to spread to my kidneys, inside of bladder & urethral tubes.
Do I have endometriosis?
Diet for endometriosis? 
Is it endometriosis!?
Ovary and organ attachment ! 
Feeling forced into surgery? No other option
