Has anyone had endo removed from pouch of... - Endometriosis UK

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Has anyone had endo removed from pouch of douglas

mel84 profile image
12 Replies

I have endo which has been removed but got told that i have it in my pouch of douglas which they can not get to or cant remove. I ended up in A&E after having coil fitted and got told there is no reason why all of the endo cant be removed im now really confussed can anyone shed any light

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mel84
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12 Replies
Lilykat197 profile image
Lilykat197

Hi mel84

You will see from different posts that quite a few ladies had endo on the pod, me included.

I had mine removed along with other areas in early April, I am not sure why they could remove yours could it be maybe that the surgeon lacked experience? I would ask to see the consultant again to find out why it wasn't removed and what they intend to do about it??!!

Failing that I would see your Gp and ask to be referred to an endo specialist xxx

tillyblake profile image
tillyblake

Hi mel84,

Ive had Endo removed from my pouch of douglas during both of my laps so it can be done in straightforward cases.

As Lilykat197 says, I would make a point of asking your specialist why it was not removed and what it being left means for you. When did you have your procedure done? Do you have any appointments coming up where you could ask? X

Meggiemoo0826 profile image
Meggiemoo0826

Hi Mel84

I have suffered with endo for many years now & it was first diagnosed in my pouch of Douglas. This was removed & I went on to have 2 children.

Unfortunately the endo is back with a vengeance & I am now on decapeptyl injections.

Ask to be referred to a consultant who specialises in endo & explain your concerns as it definitely possible to have this removed.

Hope you get some answers & relief soon.

Xx

Brownlow profile image
Brownlow

Hi Mel,

It's not really a case of "can't get to or can't remove" so much as "we are not sufficiently skilled to do this operation and we need a colorectal surgeon".

I suggest you return to your GP and say that you require referral to an endo specialist team. There are a growing number of endo centres around the country and the advantage is that they have multi-disciplinary teams with colorectal surgeons and urologists to remove endo in areas that concern their specialism like POD endo or bladder endo. You have the right to choose your specialist on nhs so look on these lists bsge.org.uk/ec-BSGE-accredi... or provisional centres here bsge.org.uk/ec-BSGE-provisi... print out the details and tell your GP who you want to see. In an ideal world your gynae should have referred you on to an endo centre as soon as POD endo was known.

It most definately CAN be removed.

stevieflp profile image
stevieflp

I second Brownlow. I had an obliterated PoD but had it all removed by a specialist surgeon with no further problems so it can be done - just need to get an experienced endo surgeon.

All best wishes x

Deeunit41 profile image
Deeunit41

I just to add to what everyone else has said. I also had an obliterated pouch which was operated on as part of my op in August. A specialist surgeon can handle it.

juebaloo profile image
juebaloo

I has thermal ablation for mine which does not remove all the endo roots. Seeing an endo specialist who will perform excision surgery.

mel84 profile image
mel84

Thanks everyone for the replies. I have an appointment on 1st July and will ask questions as everything else I have tried since does not seem to be having any or very little effect and they have done the hormone suppressants and the coil now. I would like the opportunity to have it all removed to see if that has any effect on my back pain and also rectal cramps are becoming more of an issue. Now that I know that it can be done successfully I am more determined to get answers as to why it was not all removed. So thank you

soub profile image
soub

I have been told I have endo in my pouch of douglas but my surgeon is planning to remove it by excision surgery. He definitely implied it was possible to do, and never suggested otherwise. Who told you it can't be removed? Was it down to that particular surgeon's skills, or something they thought was not possible to do by any expert?

mel84 profile image
mel84 in reply to soub

My surgeon just said that they removed what they could but could not remove all of it so was putting me on zoladex implants for 6 months, which was not too bad but you can only be on them 6 months as soon as I came off them my periods returned with just as much pain. So they decided to fit the mirena coil which they did at the beginning of Feb which seems to have just made everything worse I knew it could take 3-6months to settle down but I don't know if I am coming or going anymore at least I knew when the pain would be worse before this. I am still bleeding rectal cramps are worse I am lighter but longer and sometimes more than once a month. Its a nightmare and that's why given an option I would have it all removed

Danii profile image
Danii

Hi

Ive had mine both lasered and excised in the past too.

Lou_R profile image
Lou_R

I agree with everyone here. I've had it removed from my POD (which I didn't even know I had until my surgeon told me I had endo there). Good luck!

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