Grade 4 endometriosis in Pouch of Douglas

[SRD91]

Hello everyone

I am new here and have joined for advice and support , as you all know endometriosis can make you feel very isolated and alone at times.

I have had issues with pain and heavy periods since I was 11 years old , with so many appointments back and forth to GPs and different Gynea departments, I was finally diagnosed with grade 4 endometriosis last year at the age of 32 !

By this point it I had chocolate cysts and the adhesions could be seen even on ultrasounds because it had been left for so long - frustrating I know ! I went in for surgery and diagnosis and they are unable to remove ANY endometriosis as they said it was that severe and I would need to see a specialist and a colorectal surgeon . This has been so daunting and scary as since I have been left in the dark until recently my case being taken to an MDT meeting .

My endometriosis is the most severe in the pouch of Douglas and the report from surgery states it is “ obliterated “ along with my right ovary and bowel . Since surgery last June I have now also been diagnosed with ademoyosis too .

I have never heard of endometriosis in the POD before this and was wondering if anyone else here has this form of endo , and was surgery successful without needing colostomy as this was mentioned in my most recent consultation .

Take care

Siann x

[Slwhite1991]

I have endometriosis in the pouch of Douglas aswell. Very similar to you I was diagnosed last year aswell at the age of 31 after struggling since 11 so you are very much not alone in that respect. I went privately for a laparoscopy to get answers and was told I was wasting thousands of pounds and it was very unlikely there would be any endometriosis. There was and I was told it was removed with ablation where he would as it was close to the urethra and things like that. My surgeon was just a regular gynaecologist so my faith in what he's said isn't exactly high unfortunately. I was told it was only stage 1 but since then have taken my images from the procedure to an endometriosis specialist who thinks it was more severe and not removed or dealt with properly. Its a really hard condition to have and to be mishandled majority of the time. I really wish I could help more and have more knowledge but I just wanted you to know I have it in that area too.

[Endofitall]

I am sorry you’re in this position. I think it’s common that we ladies with this form of endo present earliest but get diagnosed and managed latest sadly. I saw a BSGE Centre team who managed my endo at laparoscopy. I was lucky I was able to see them first so that it was all managed in one procedure, and I was lucky it was possible to shave it off my rectum and free up my ureter without needing colostomy etc. Surgery has already made a world of difference to my symptoms.

I really hope you can get good advice on what to do next. In the meantime I did find that changing my diet provided some small relief eg gluten free, lactose free, low FODMAP trial (I found I needed to permanently exclude onions), peppermint tea.

Wishing you well

[Endofitall in reply to Endofitall]

Mine was slightly deeper down into the rectovaginal space and affected my uterosacral ligament but I think it is very similar to POD disease which is between rectum and uterus.

Post op recovery was hard (12 weeks plus) and I need good hands on pelvic floor physio to get back to some reasonably normal peeing/pooing and sex (all still a work in progress but better).

[Sunset-lady]

Morning, yes I have exactly the same as you in every aspect except I have fibroids too. They tried to do a hysterectomy but found it all fused together and couldn't do it. The endo specialist also doesn't want to touch it. I'm 51 and he wants me to go through menopause. My issue is I'm hemorrhaging all the time. I'm on zoladex now - month 3 and it is starting to work a bit. I'm only hemorrhaging 1 to 3 times a week rather than every day. Good luck xxx

[Sunset-lady]

I also manage endo through my diet. No alcohol, no ultra processed food and very little grains.

[Avourneen]

Sadly this is really common. Stage 4 endo often obliterates the POD, the POD is just a gap that should between the uterus and the rectum so it is very normal with endo that has gone into the bladder. I had excison for this about four years ago with a colorectal surgeon and and gynae. It helped quite a lot but he left endo on the sigmoid colon as he told me removing that could be very bad for fertility. It has grown back a lot now and I manage by taking cerazette to stop my period.

I've seen four doctors and they are all reluctant to operate as everything is stuck together and if they do they will need to cut out a big section of bowel. This can work but I would need a colostomy bag temporarily but they told me this op is also very high risk and can cause a lot of problems. I was diagnosed at 32 and I wish I had had the op then and not considered trying to save my fertility. Now they can't really do anything to help and docs just suggest waiting for the menopause. I'm 51 but no sign of it yet so I'm just taking cerazette and hoping it will come soon. I would say get the op done asap as otherwise it will just keep spreading. Good luck xx

[SRD91]

thank you all so much for your replies . Yes my report says obliterated POD and severe extensive endo on all reports . I have been taken on by a surgeon in a hospital in Bedfordshire who believe they have the expertise to deal with this without colostomy - they use robotic assisted surgery which sounds a bit scary . It’s just a classic case of women being fobbed off …. I had severe symptoms since 11 like I said and the surgeon explained there was a good 20 years worth of scarring In my abdomen which is why it is now so hard to treat . I am blessed to have had two children In my early 20s as now I would not and can not fall pregnant . Sending love to all of you xx

[SRD91 in reply to SRD91]

Also when I went for surgery I knew I had endo due to chocolate cysts , this is what it took for them to believe me . I never believed I would be told I was grade 4 and wasn’t treated in my first surgery …. It’s really Tricky isn’t it 😕

[For_the_love_of_otis]

who is your surgeon in Bedfordshire?.

I also have an obliterated POD, as well as large adenomyoma in the uterine wall, endometrioma in my left ovary, and adhesions on the bowel. Stage 4. I'm 39 with no kids.. tried 3 rounds of ivf for egg collection last year ( this is how I found out I had endo).. but they failed at fertilisation stage. My endo specialist also says that 'everything is stuck together' and seems reluctant to operate.. i have 4 options of surgery... ranging from a lap to a full hysterectomy and bowel resection. he told me to take 6 months.. and for us to try naturally to see if a miracle happens.. but we are 3 months in and I think I know what's going to happen.

My symptoms are cyclical - mercifully - rather than all the time. Does anyone know if the bowel related symptoms go away if you have a hysterectomy? If you have no cycle... the endometrial tissue should stop shedding? Right?

I'm thinking that if in a few months if nothing has happened fertility wise I need 'stare down the barrel' of surgery... but then it's the choice of how far to go with the surgery.. anyway.

Your not alone Siann. Never think you are alone.

[SRD91 in reply to For_the_love_of_otis]

* for the love of Otis *

I have only just seen this reply , I am so sorry.

I was under Stoke mandeville who were shocking and now I have been sent to Milton Keynes hospital - in hindsight I don’t think they are any better 😞.

I’m so sorry you are going through this . How are you feeling and have you decided what options to take with surgery etc ?

Siann x

[For_the_love_of_otis in reply to SRD91]

Don't be sorry. I wasn't expecting a response. Just didn't want you to feel alone.

I am still in the holding period waiting to see if I can get pregnant/ improve my pain miraculously without surgery. The more I've learned over the past few months, the less faith I have in uk medicine... and honestly im now terrified of botched surgery so ill be doing all i can to avoid it.. Currently I'm exploring accupuncture and Chinese medicine. Sounds kooky... but they have had me do tests that the ivf and gyno did not even mention.. like microbiome, and full hormone panels and bloodwork, and have been giving me personalised chinese herbs and supplememt regimes to try and help. It's dramatically improved my bowel endo symptoms and mental symptoms. Fertility wise, they detected a microbiome issue which most certainly was impacting my ability to conceive (that I didn't know I had, and was fixed with a course of antibiotics) and I think I'm starting to see some improvements to my cycle.. no baby yet though.. and a recent scan showed my endometrioma on the left is now a cm bigger...as well as a new small endometrioma on the other side.. which seems like hefty growth for 6 months.. too much to fix... too little time..

This lady has been really helpful to me, she's part of a network which sort of looks at the disease and fertility holistically... diet, medical, mental etc.

essexfertility.co.uk/about-me

If you wanted to try it to see if you can take another route to try and help symptoms.. she might be able to help you (or recommend someone closer to you that is part of their network and similarly trained).

How is your situation?? What happened with the hospital in Bedfordshire?