Endo in Pouch of Douglas : I was diagnosed... - Endometriosis UK

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Endo in Pouch of Douglas

Laurenjmiller profile image
Laurenjmiller

I was diagnosed with mild endometriosis in July 2017. I have recently found out that the endometriosis is on my Pouch of Douglas. My gynaecologist said that she is not willing to do any treatment on it as I have not had it for long enough (bearing in mind when I went into the appointment she had not even read my notes to know why I was there and did not know I had endometriosis until I told her). Can anyone offer any advice on where to go from here? I'm worried about fertility and cannot bear to be in daily pain for much longer. I need something. Will my GP be able to refer me to an endo specialist? Thanks in advance

7 Replies

I get where you’re coming from, I found out on Monday mine was on my pouch of Douglas and also mild or stage 2 as my consultant called it. I’d only been experiencing my symptoms 2 years, but I was offered different hormone treatment, and also surgery. So I am now continuing with my pill until the surgery comes around as it’s a long wait. It should be your choice what treatment you get, I would stress to them that you would like the opportunity for surgery as a way of possibly relieving any pain and symptoms you have x

Laurenjmiller profile image
Laurenjmiller in reply to Slm327

Thank you for your reply :) Sorry to hear you also suffer from this awful condition. I feel like sometimes doctors play everything down. I'd much rather have the option for surgery just to see if it will relieve pain and symptoms. It's worth a try. I think I'm going to see if I can be referred to another gynaecologist x

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Hidden

Hey lovely ladies.

I have had endometriosis treated in on POD. It was done by my fertility doctor. Unfortunately my grew back after a miscarriage and is now all over my rectum and I’m now under a endometriosis specialist and awaiting to see a colorectal specialist for my severe symptoms to assess what surgery is needed. I’m awaiting on surgery date but need to know if it’s superficial or deep endo.

Why is the gynae refusing to treat the endo when it’s causing you pain & symptoms? That doesn’t sound acceptable to leave a patient with pain & symptoms. Usually they treat endo when they do a lap unless it’s on a non pelvic organ such as bowels; in that case you’d be referred to a endometriosis specialist and colorectal specialist.

It is known the stage of endo is not indicative of the pain& symptoms ie you can have severe endo but little or no symptoms or mild endo and high level of pain & symptoms.

My endo on POD affected my fertility and I only fell once it was found and treated that was 6 years after TTC. Are you wanting to try soon for a family? Sometimes when endo is removed it can grow back more aggressively ( mine has but it was left on my rectum it might not have if it wasn’t there I will never know)

You can suppress the growth; the gynae said either tricking your body into early menopause or becoming pregnant would stop endo from re growing 👍they were the only options.

I would definitely go and see your GP and tell them all your symptoms; get them to write to the gynaecologist that treated you. I did this about my severe symptoms when my endometriosis specialist was ignoring my symptoms and thanks to my GP and fertility specialist I’ve been referred to a colorectal specialist ; otherwise I’d be risking more additional surgery and waiting 🤦🏽‍♀️

Don’t give up and fight sometimes we have to. You can do this 👍 xoxo

Laurenjmiller profile image
Laurenjmiller in reply to Hidden

Thank you for your reply. Sorry to hear you're also suffering.

I was really upset when I left the gynaecologists as the pain is affecting me daily and I don't know why she's ignoring it. I wish they had treated it when I had my lap in July and was diagnosed.

The gynaecologist did say that the stage does not indicate the pain or symptoms but then went on to say that she doesn't see the need to treat it yet.

My worry is that my fertility will be affected. We are wanting to start a family soon.

I definitely need to try and fight it and find another gynaecologist or specialist.

Thank you again. Xx

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Hidden in reply to Laurenjmiller

Did you consent to treat any if found prior to the laparoscopy? Unless the surgeon has consent they can’t do anything. Normally when they do a diagnostic lap they will treat it at the same time and usually they will get to sign to say that is okay. I’m confused why she didn’t do that ? Seems odd...

Was it just POD? Did she check everywhere else like bowels? Have you got a follow up appointment? Did she discharge you and on what grounds?

Thing is with endo is it can and often does grow back; it might be you have more endo there causing you more pain & symptoms; do you feel it is has got worse?

Mine was on POD and rectum. I had gynae and bowel symptoms.

Definitely get a second opinion the fact you are in so much pain and want to start a family means it cannot be ignored.

It angers me when medics think it is acceptable to leave us suffering horrific symptoms; my endo specialist was prepared to leave like this for 8 months till my lap; it was only by my GP writing to him and my fertility doctor getting involved that he has issues a referral to a colorectal specialist to assess the severity of my endometriosis. He should have known better... 😡

Get your GP to write to the gynae; they are much more likely to listen to a GP than you unfortunately. 😡A GP can hold a bit of whack.👍

Also have you looked into your diet; my fertility doctor recommended I went gluten free and cut my dairy out as both of those can make endometriosis symptoms worse.

Stress also makes it worse.

Write all the symptoms down and really let the GP know how bad the pain is; us ladies are brave and we tend to play it down but don’t. You need this to get sorted. xoxo

Hi Lauren

I’m sorry to hear you’re suffering due to your Endo. My advice would be to look online for a specialised Endo department near you (I live in London and after a really bad experience at one hospital for my first laparoscopy I asked to be referred to UCLH who have a dedicated department.)

The consultant will likely tell you that it is up to you whether you get a laparoscopy I.e. how bad is the pain? Can you manage it or not.

They found something on my PoD (a year or so after my first laparoscopy) but during the second lap they found Endo on my bladder amongst other areas...

It is a constant battle I’m afraid... even after my second lap I felt pain and was unwell so it is quite depressing but there are things that can help such as a healthy lifestyle (exercise and diet). We are all different so you need to find what works for you. Good luck!

Thank you for replying. Sorry to hear you're also suffering.

I think I definitely need to look online for a specialist and try and be referred

I don't have a pain free day due to the endo but some days are a million times worse than others.

I'd rather have a lap to see if it does reduce the pain as it worth a shot. I need to find something to help my pain

Thank you x

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