Endometriosis in the pouch of douglas - Endometriosis UK

Endometriosis UK
49,453 members41,123 posts

Endometriosis in the pouch of douglas

Lucie2015
Lucie2015

Hi,

Has anybody had endometriosis in the pouch of Douglas? Was the operation to have it removed just a day case? Also what stage of endometriosis is this classed as? Thanks in advance.

20 Replies
oldestnewest

Hi, I was diagnosed with stage 4 POD endometriosis, still waiting for an operation date. I’ve been told that it depends on how bad the adhesions are and how deep the bowel is infected, Sorry I don’t have any more answers

Lucie2015
Lucie2015 in reply to Roro1

Thanks. Do you have it in other areas as well?

Roro1
Roro1 in reply to Lucie2015

No, it’s only been found in one area, though I have pain in my lower right side.

Hi, I was diagnosed with Endometriosis in the pouch of Douglas from an MRI scan in February. I then had a laparoscopy 4 days ago. During the laparoscopy they discovered that it was in the pouch of Douglas, around the front of my womb, over my bladder and between my womb and bowel. All of this was removed using ablation and excision. I can’t stress enough to make sure that you ask if you’re having excision too because ablation is just like trimming the weeds whereas excision removes the root of the weed completely if that makes sense. I also had a camera put into my bladder because they thought I had endo in my bladder however I’ve not been diagnosed with something called painful bladder syndrome which is like IBS but of the bladder. I didn’t have it done on the NHS so I was in hospital for two days but I was planning on having it done on the NHS and was told it was just a day case. If I hasn’t of gone privately I wouldn’t have had excision of the Endometriosis just ablation and I wouldn’t have had the camera into my bladder as it was my private consultant that wanted to do that. I also went privately because of the waiting time of the NHS they told me they wouldn’t have been able to operate until August! I’m glad I went private because my consultant said if I hadn’t it would have been a completely different story and it would have been a lot worse meaning it could have lead to me needing a hysterectomy at the age of 17!!! I have stage 3 Endo. I hope you get some good answers and you get the best possible treatment you can get x

Thanks for replying. Sounds like you have been through an awful lot. I hope your recovery is going ok.

I’m back in hospital but receiving good care. Hope you get better soon too!

Hi,

I was diagnosed with endo stage IV in the POD along with ndo on bowel, ovaries, adhesions etc. I had it removed with laparoscopy and excision privately and I was in hospital for 2 nights. It came back again 5 years later despite the excision and by then I had so much else going on (adenomyiosis,fibroids,etc) that I opted for a hysterectomy.Usually deep endo in POD is classified as Endo stage IV.

I was diagnosed with endo in pouch of douglas (and other areas) a couple of years ago.

I decided to have it removed everywhere but the pouch of douglas as my surgeon advised there was no way to know how deep it was until they started cutting into it, and therefore there was a risk of needing to use a colostomy bag during recovery and the thought of that really shook me up.

Are you thinking of having it removed?

Thanks for your reply. I’ve been on the waiting list since the end of November last year. Apparently, there is about a 7 month wait. I had a large cyst removed last year and the surgeon found extensive endo but they couldn’t remove it at the time. I’ve tried the mirena coil and the pill since and the pain is still awful. I had a MRI in December to establish how deep the endo is. I still haven’t had the results. The secretary refused to give them to me and said that the surgeon uses them to plan for the surgery and the report isn’t provided to the patient. I think that’s very strange to be honest. I’ll be glad when the whole thing is over and done with.

That seems very strange and stressful? I’m not sure the secretary is correct but don’t know much about patient rights - perhaps worth asking your gp for advice, or even citizens advice bureau?

Sorry you’re dealing with all of this, we’re all in the same boat but it doesn’t make it any happier does it 💖

Thanks. I’m finding the whole thing strange but I’m just focusing on the fact that the surgeon doing the surgery has already seen the endo. I expect that if something awful had shown up on the MRI then I would have been called for a further appointment. I understand why they do it just to plan for surgery but it’s pretty odd not sending a quick letter at least saying that the results have been viewed and just come along as planned when contacted with a date.

Hi,

I had POD endo, it tends to be quite invasive, stage 3-4 I think; you'll know better post op.

For POD I'd say you'll be in 2 nights, you could maybe get out in 1 but they'd need to be doing your surgery in the 7am slot for that. I've had 4 laps and always been 2 night minimum, longest 5 nights due to major surgery and the fact that my bladder acted up (organs don't like being handled and you may have difficulty peeing for a few days/sluggish bowel for a wk or two).

You'll need a few weeks off work regardless; recovery time for minor disease is still 3-6wks, 6-8 weeks ordinarily (though you shouldn't need all that time off that is how long on average it would take you to feel tip top again). If there is bowel involvement and complex major surgery carried out then you are looking at about 8-12 weeks recovery, 6 months until feeling back to normal.

endo-resolved.com/laparosco...

That guidance is really useful and will help you prepare for surgery. Make sure as another poster has said to ensure you are having excision surgery with an endo specialist. Also bowel prep such as movicol the day/night before really helps with POD recovery (as it's between the vagina and the bowel passing a motion can be sore post op especially as you'll be on painkillers that can cause constipation, bowel prep also makes conducting surgery easier), I also found having a blood drain in and catheter made for easier recovery so ask whether the surgeon plans to do either of these two things.

Hope that helps

Lucie2015
Lucie2015 in reply to applebird

Thanks for the advice and guidance. It is really helpful. I’ve had two laparoscopies before to remove cysts so I kind of know what to expect but it’s the area where the endo is that’s bothering me. The next time I’ll see someone is the day of the surgery which bothers me.

applebird
applebird in reply to Lucie2015

Phone your hospital general switchboard no. and ask to be put through to your surgeons secretary, say you are due to have surgery and forgot to ask some questions (if you have any concerns), ask for secretary or doc to phone you back with answers or respond via email.

I have endo on my POD, found via a lap in 2017. I wasn't given a stage when I was diagnosed, but I think they removed it with ablation. I was only in hospital for the day, went home the same day I went in :)

That’s great about going home on the same day. People seem to have had very different experiences. I hope to get home on the same day but I suppose it depends on what time the surgery is and how well it goes.

If you are coping reasonably well and there is no blood in stool etc to indicate bowel involvement/they haven't sent you for an MRI it bodes well for POD.

They will have you booked for a set amount of time to do the surgery. If it is more of a mess than they anticipated then what they will do is carry out as much as they can, then close you up and book you for more major surgery/multidiciplinary surgery.

i.e. you would have a heads up if you needed to be in 3-5days/would have an extended recovery time.

From what you've said I'd say you'll be home in 48hrs and not need any longer than a few wks off. Will all be over soon :-)

Thanks. I asked if it was inside my bowel and the gynaecologist said no. I have ibs symptoms during my period and mid cycle but I’m usually ok the rest of the time in relation to that other than the general endo pain I get.

Yes I still have adhesions in my Pouch od Douglas. I had a operation. It was not a day case. Is was not keyhole. It took 4 mths before I recovered enough to stand for long periods and my sex life was little. Since the operation I have nerve pain some times when my bowel is full. They couldnt remove all the adhesions because of veins there. My endo was wide spread in the trunk of my body and serious, Chronic at stage 4+.

You may also like...