If Endometrioma are cysts on your ovaries, how come my discharge letter says I had 3 x 3cm ones on my womb?

[silverandglass]

I did not see my consultant on discharge from the hospital and the ward doctor did not give me any confidence in what he was saying but he did say it was quite difficult to read my consultants notes. I had not heard of Endometrioma before but on looking it up, there were no answers saying it is found on the womb. I am confused and to be honest a bit fed up. I am also concerned that if my ovary was 'stuck' to my womb, why was this not mentioned? Do you think it has also been removed? Why do they let unqualified doctors (I mean doctors who do not have a clue about your particular illness) waffle on and let you out of the hospital when basically they are unaware what you have had done?

[Impatient]

An endometrioma is a cyst filled with old blood, so something has to be bleeding in to it to fill it up...ie endometriosis that cannot escape.

The cysts can be wrapped around an ovary completely encasing it - in which case you would usually forfeit the ovary...but can also be right next to it or infact some centimetres away attached by a stalk (a bit like an umbilical chord) supplying it with blood.

If it is on a stalk is has a much great chance of falling down in to the gap between the uterus and the bowel (called the POD or pouch of douglas) and this is a very common location for endometriomas to end up. They are heavy (filled with fluid or old blood) and gravity will naturally tend to pull them down.

If you have adhesions (gluey scar tissue) growing around the cyst or ovary or organs then the cysts can get stuck to those and thus stuck to whatever the adhesions are stuck to. ie the womb, the bladder, the bowel etc.

When they say the cyst was on the womb, it was probably glued to it with adhesions, but the supply of blood was coming from an endo lesion usually located on the ovary.

This can mean it had a stalk and/or that it had pulled the ovary out of place. The ovary gets glued in place to a neighbouring organ with adhesions.

a 3cm cyst is a small endometrioma and under the size they would nomally surgically remove (though can cause all manner of pain even at that size) so you have been lucky to get it taken out. They can grow to whopper sizes.

You would have been told if the ovary was removed. Look for the word 'Oophorectomy' on the discharge note. If it isn't there then you still have your ovaries.

Salpingectomy would be the removal of a fallopian tube.

Hysterectomy is just the removal of the uterus/womb.

There is no need to remove the ovary if the cyst was not growing around it and if there was nothing to indicate that you might have cancer or anything similarly nasty.

The usual routine is to free up the ovaries and any other organs that happen to be stuck with adhesions. This should last some time, but as adhesions always regrow and every surgery encourages more to grow, you could find the ovaries getting stuck again with or without cysts on them.

Even when the ovary is encased inside an endometrioma, they can be cleaned up from the mess of the cyst and still be working which is what happened to my remaining one. The wretched thing was stuck in an 8cm complex endometrioma, clean up and released from the mess, it has since produced at least two more cysts that i know about. One that burst in November and the one it has currently got attached to it and is causing problems.

The other ovary was inside a 6cm complex endometrioma and was removed along with fallopian tube. I don't miss it one bit. Thankful it has gone.

Most of us don't see the consultant before discharge from hosp, and even if promised a follow up appointment, they are rarely arranged unless there are post op complications of some sort.

Your GP wil be send a report of the op for your medical records, so if a fortnight or so has passed since the op, give the GP surgery a call and ask if the hosp report has arrived and if you can see it or have a copy. They are rarely very detailed beyond what will have been written on the discharge form anyway.

[cupcakegirl]

I've had five laps now and in all cases (I think), the surgeon who performed the operation is the one who came to see me - I'm trying to remember a time when this didn't happen, maybe the first one (can't remember now) as it was apparently "clear", but when I was diagnosed or when I've been treated I got to speak to the person who actually did it, so they could tell me what was actually found.

Unfortunately it seems to be fairly commonplace for doctors not to tell us everything they found or give much detail - personally I want to know everything, but I suppose there are patients who aren't very clued up and wouldn't understand what they're saying. Even then, I think it's their duty to give us full details. I once had my tube adhered to my bowel and freed up and wasn't told - I was really cross. Apparently it's not damaged but who knows.

I am certain they will not have removed your ovary without informing you - if they did, I'm sure this would constitute some sort of malpractice since this is very important information.

They should write to your GP with their findings - in my experience these are not very long notes but do contain everything that was done or found.

You can request a copy of your notes from the hospital records department - they may charge you an administrative fee but this is capped at a certain level I believe (I got mine years ago). They may be hard to read.

I can't be sure about the cysts as I've never had one luckily - if the notes were illegible, it may be that there were large deposits on the outside of the womb, I can't see any reason why this couldn't happen rather than them being on the ovary, as 3mm is not a very large cyst but is quite big for an Endo deposit as they are usually very small. Again, I'm just guessing.

Try not to worry and wait until the doctor gets the letter - if that's not enough info, request your notes.

What happens now depends on the hospital - most gynaes will give you at least one follow up appointment in my experience, to see whether surgery has helped. If so, they may discharge you or leave your referral open. If not, they should then look at hormonal treatments etc. Personally I'd be shocked if someone didn't get a follow up to surgery but most of mine were years ago so maybe that happens more now - many Endo patients need ongoing treatment so discharging straight after surgery is a terrible idea.

If you're unhappy with your treatment you might want to look at seeing a specialist - I had a great one in Oxford who would give me DVDs of my surgery so I could see exactly what was done, and he really seemed to care.

Sadly too many gynaes who perform laps, especially diagnostic ones, have little knowledge of the disease - that's why my first lap was apparently clear, and after my most recent was told they found hardly any Endo so that can't be the cause of my pain. Having seen the videos, my Endo gets pretty widespread but it's clear or orange and very hard to see - I have no faith whatsoever that they saw and removed it all. I even gave them my DVD of my last op - I bet they didn't even look at it.

Anyway, hope you get some answers soon

x

[Chrissie66]

Endometriomas are most often found on the ovaries, but they can crop up anywhere within the pelvic cavity, including the outside of the womb. As Impatient said, 3cm is not huge, and the surgeon probably dealt with them while he/she was in there.

If there had been anything very out of the ordinary or 'important' going on your surgeon would probably have made a point of coming to see you. But if it was 'just' normal endometriosis and the op was straightforward there was probably nothing the surgeon could tell you that the ward doctor didn't.

[silverandglass]

Thanks for the replies and yes, I thought I knew a lot about having Endo due to having had an oophrectomy due to a cyst being the size of a gala melon! and spent 5 hours in my last operation having loads removed. (i was down 3 hrs this time - thank god) I think it's because I know things that this was a bit of a shock as had never heard of it before. When I have scans (and I know Endo doesn't show up) the technician always says they can't find my ovary, am I sure I only had one out? This obviously put me in a panic when I saw that Endometrioma was cysts (have only been told they were called chocolate cysts in the past)/I thought they may have removed my ovary without my knowledge with it being stuck to my womb?

Every op I have had in the past, my consultant has always come round after to tell me what has been done but I am aware that this time, they so wanted the bed and just wanted me out. Every hospital visit is different and what with someone from his team coming round with a questionaire, (she told me my consultant would be round that morning) seeing the physio, getting meds and dressings/candula taken out etc I was in a complete daze by the time the doctor came round and as I hadn't slept all night, I just wanted to get home.

I will ask my GP but they are normally useless so I will either wait for my 3 month appointment or be in touch with my consultant's secretary. I have been under him for at least 10 years and only stopped 6 monthly appointments with him about 3 years ago, so I do have a lot of faith in him and what he does.

It's a shame that not everyone has a good relationship with their gynae and a shame that so many women on here are in the dark are really scared due to lack of information available and the darned medical professionals brushing us off when we are all so desperately in pain/not coping to lead a 'normal' life. I also see how many of us have tried the hormones but how negative the results are - mine included. I have always pushed to see an endocrinologist as I feel someone who is trained to deal with hormones, should be the person to try and sort ours out don't you think? Not a gynae who dishes them out willy nilly in the hope that maybe, just maybe, they will work. If an Endocrinologist can test hormones for diabetes/fertility/PCOS - I think? then why not Endo? How many more years can this go on? I always said I would have my life back by the time i was 60 but I am so concerned that after not being able to hold a job down by that age, I will not have the money to have a life. This is all so disgusting.

And after all that negativity, I am getting off to try to recover and get my insanity in check lol

Good luck everyone x