Endo in pouch of douglas

[sam_naylor]

What does this mean for me? Had my lap today. I'm recovering well except for being sick ALOT! That's the only place they found the endo and didn't state whether it was severe or mild. Follow up in 6 weeks to talk about mirena coil and further ops

[worth71]

It can be classed as severe depending on where endo is found, as opposed to how much, endo in the pouch of Douglas is considered severe from what I'm told, get plenty of rest, hope recovery goes well for you xx

[sam_naylor in reply to worth71]

Thanks for replying. They didn't really tell me how severe it was. They didn't get rid of it though. And says in the notes for follow up session to talk about further operations. I also have adhesions. I know what they are but dunno what complications or anything

[Stig in reply to sam_naylor]

Hey, I just wanted to let you know that when I had my lap they found endo on the pouch of douglas and I was classed as mild. You can't know how severe it is unless they tell you. Symptoms don't necessarily match severity of endo. Don't worry, I would suggest you write down all your questions before you go to the follow up. It's so easy to forget what you want to ask.

Hope you feel better soon!

[pinkypop in reply to Stig]

hi stig

could you pls tell me your surgeon's name did he do excision on pouch of douglas to remove mild endo ?pls reply soon

[memyselfi]

I've had quite a lot removed, including from the Pouch of Douglas, and I have quite a bit left in because I was told it couldn't be safely removed. After my last op my Consultant said I had Stage 4 endo because I still had it on my bowel and ureter.

I just googled and found a US document explaining that it depends on 'location, extent and depth' of the endometriosis and it seems that a kind of points system is used to take these three factors into account to determine which stage it is. I expect it is the same over here. So basically, knowing it is on the Pouch of Douglas doesn't really help unless you know how widely it is spread over that area and how deep it is.

[sam_naylor in reply to memyselfi]

Unfortunately they didn't tell me how much or little was there. Just that I have it in my pouch of douglas and have adhesions. So don't think i'll know much till follow up appointment. X

[memyselfi in reply to sam_naylor]

My experience is that they tell you very little. I had to ask which stage it was.

I agree with Chrissie 66 that as the Stage model doesn't take into account how much your daily life is affected by it, and as we know that some people can have stage 4 and not be affected and some can have stage 1 and be in a lot of pain, it isn't very useful for you as a patient.

Except that it is a good short hand for explaining to other people/friends/family what is wrong. It has been easier for me to say: I have severe, stage 5 endometriosis, rather than list where exactly it grows on me and they can always go away and look that up if they want to.

My advice would be to ask exactly where they found it, where it was removed from and where it still is.. You could try asking how deep it is, but my experience is that it was hard enough to get a straight answer to the rest of it.

[sam_naylor in reply to memyselfi]

They didn't remove any hun. It was just a diagnostic lap.

[Chrissie66]

I'm never really sure how useful the staging system is to the person with endo. With cancer it actually means something in terms of possibly mortality but that's not the case with endo, and as Stig said severity or staging doesn't always correlate with symptoms; I was stage 4 at diagnosis but prior to the burst cyst that led to me being hospitalised and subsequently diagnosed, I had no clue that anything was wrong.

I guess there are fertility issues, but then only if the endo is directly affecting the organs involved.

I'm rambling to myself now. I'll shut up

[Sunset81]

I had on pouch of Douglas and on lenght of my bowel and several other places my endo is severe since my op they have tried many different things without success I hope its different for u xx

[cupcakegirl]

Endo in the POD is very common, if you have endo then chances are you have it there. This is because, when the endo bleeds, gravity causes it to pool in the lowest points and will get trapped in the POD. I have always had mild (moderate at worst) endo, but severe pain daily, and having had five laps and tried every treatment I had To stop working two years ago. Sadly, mild disease doesn't mean mild symptoms, and if you have mild disease that causes severe symptoms, it can mean that surgery is less successful as your symptoms return as soon as a tiny bit of endo returns.

I don't find the grading system helpful at all - in fact, when you have mild disease it can often be used against you. I've had so many doctors say "but it's only mild, it can't cause that much pain". The only way it's helpful is so you know how severe it's likely to be getting after a lap - when you'd symptoms return after surgery, it helps you know whether the pains could indicate something that could be serious or that it's probably nothing to worry about.

With endo in the POD, you're likely to get stabbing pains up the bum which are horrid.

I had two diagnostic laps before I had a treatment op - some gynaes do say that the more surgeries you have, the more problems you'll have but honestly I believe it's more serious than that. I believe that, if you have mild endo, you should stick to hormonal treatments as much as possible and avoid surgeries as much as you can. Maybe try one treatment lap, as maybe it will work for you, but if you find the symptoms come back within a month or two, avoid gynaes who advise you to keep having more. I used to be under amazing gynaes and pain specialists who made it clear to me that my problems are caused more by nerve damage from years of pain and multiple ops than they are by the endo itself. Ten years and five ops later, I'm in a far worse state than I ever was and I wish I'd just stuck to the pill etc - zoladex worked brilliantly for me but I stayed on it for two years and now my hormones are buggered. Frankly I think getting diagnosed and having all the ops has made things far worse - my older sister also has endo symptoms like I used to have but she can manage them, she's never seen a gynae about it and she can function most of the time. I wish I'd left it alone to be honest. I'm not saying don't get help but do consider they surgeries may not be the answer in every case.

As for the mirena, do your research - some people do well with it but a high proportion of endo sufferers seem to have problems. For me it was 11 months of pure hell.

I hope you get some relief soon.

x

[sam_naylor in reply to cupcakegirl]

Thanks hun, I understand what your saying I know that the pain & symtpms are not necessarily a guide to how severe or mild your endo is. They never told me my 'stage' anyway didn't really give away much info if I'm honest just endo in pod and adhesions. Have to wait for my 6 week follow up to find out more. I honestly didn't think I'd be in that much pain though just from a diagnostic lap, thought it'd be much less painful. Nobody truly understands endo unless they have it/have had it. Mine causes me allsorts of different pains and id rather have them pains stopped after 6yrs of them. Thanks for replying though.

[cupcakegirl in reply to sam_naylor]

I've always found the ops very painful, even the diagnostic ones and its taken me at least three weeks to recover from each op, although that may be because of my ME as well.

Sadly you'll find it very hard to find people who understand and you may get very upset by friends or family who are less than supportive, but you do find out who your real friends are - the ones who go out of their way to listen and help, and who don't care when you and your house are a tip, and who understand why you can't go out all the time!

Do some research into your treatment options - knowledge is power. After having this disease diagnosed for ten years, and spending all that time on enough morphine to kill a field of horses, my advice is to take the least severe option that works. Eg, the pill before the injection or coil, and those before zoladex etc; similarly, codeine and voltarol before tramadol and morphine etc. Find out what will control your symptoms with the least side effects and damage - surgery is always a temping option as there's always the hope that you will be free of the bloody thing after it, and for some ladies that's true. However it doesn't work for everyone and there's no point having op after op if they don't help - trust me!

After trying literally every option, I'm not going to take anything other than the pill or have any more laps - I would have taken zoladex again if I hadn't stayed on it too long the first time, but now it's the pill for me and nothing else.

I hope you find something that works for you, and I can't say what that will be. My main advice is to find yourself a genuine endo specialist as soon as you can, since most gynaes barely understand this disease and can make mistakes which can cost us dearly in the long run. If there's a specialist at your local hospital that you can trust then that's great but often we have to go a bit further afield. Also make sure that your gp understands and is supportive - if not, find a new one. I had the best one before I moved and now they couldn't care less, despite the fact I'm housebound and getting sicker - having no medical support is not a nice place to be in.

You may find that a mild hormonal treatment and a lap leaves you free from endo for many years and I genuinely hope that's the case- it is for most ladies, but you won't find them on boards like this usually as they're out living their lives!

One other tip - don't have a lap whilst on any hormonal treatment like the pill or mirena coil as it suppresses the endo and makes it harder to see and therefore remove. I've had this problem myself. If they want to fit a coil and you decide to try it, ask them to do a lap to remove the endo and fit it at the same time for the best results. The only time this wouldn't apply is of your endo is so severe that they need to give you a course of treatment to shrink it before attempting to remove it, but you will know if this is the case at your follow up.

Wishing you all the best

x

[Starry_Eyed22]

Hi, if you have endo in POD would this cause constant lower back pain & pain which (how best can I put it?!) goes through bum/down into tops of legs? - As well as pelvic pain of course

[rhiannoncourtney09 in reply to Starry_Eyed22]

mine did and i had pod endo! felt like a trapped nerve