Deep infiltrating endo surgery: Hey ladies... - Endometriosis UK

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Deep infiltrating endo surgery

Ashlea2
Ashlea2
12 Replies

Hey ladies

I was diagnosed with deep infiltrating endo a couple of days ago, I was told of the operation needed to get rid of it and the risks. As I have it on the bladder , bowl, uterus and rectum I am at risk of coming out of surgery with a life long colostomy bag.

Anyone who has had the surgery, how did it go for you?

Thank u 😘

12 Replies
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DaisyThoughts

So sorry to hear this. I am in a similar position. It's scary I know. They do however give you the worse possible scenario to cover themselves I've found. Wishing you so much luck and sending love and hugs. Let us know how it goes. xx

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Ashlea2

Thank you, my first option is to try the coil and see if that helps before the surgery as they are very apprehensive about the op! I’m not very clued up on the coil and don’t no if it would work for me for ever?!

Xx

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DaisyThoughts

I'm sorry to hear that lovely. I personally didn't want to try the coil so can't advise I'm afraid. I hope you get something that helps soon. xx

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Ashlea2

It’s not something I’ve wanted to try, but I feel I have to so I’m not left in a told u so situation. Xx

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DaisyThoughts

I feel for you lovely. It's horrible feeling you have to go for a route that you would rather not. xx

1 like
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HellyLlewelly

Hun, Please do not try the coil. As an Endometriosis sufferer who also had Adenomyosis and on and off polycystic ovaries, the coil being a foreign body in there, my body rejected it by sending me the most horrendous shooting pains down my back and legs, I was told the coil can take 4 months to settle so me being hard core bore with it almost 7 months until I could not stand it any more. I bled all the time on it too so my energy levels and mood were terrible, sex was off the agenda and I made black brown sticky blood deposits. The radiating pain in my back and legs had me on 4 x 2 ibuprofen daily and being sent home from work too sore to function.

I dobt think substantial endometriosis sufferers and the coil are a good combo. I have read many stories like this from those with the more severe end of endometriosis coverage. I think it works for those with very moderate endo.

Remember endometriosis cells bleed as they are part of the lining of the womb so irritation in the area of these cells can set off a bleed. I just bled and bled and had slimy blood covered discharge. 7 months in pads....

Hun, your endo needs that surgery and hooefully you get an experienced surgeon who is an endometriosis surgeon specialist, maybe get it done at an accredited bsge appointed endometriosis centre you can google them in the UK. Hold out until you get the right one and you can meet with them prior to...

Your bowel and bladder will take a good few months to settle post surgery but it will be worth it. They will let you know worst case scenario to cover themselves.

How is your life affected currently and how do you rate your pain level?

Best wishes

Helly.

X

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Ashlea2

Thank you for ur honest reply, I think it is a big risk even a risk is all it is but I don’t feel the coil will see me threw and I worry that the op will have to be the end option sooner or later. I have been back to my gp and asked to see a specialist at the BSGE centres, to someone who does these sort of op regular it may seem not as bad to them!

Have you had the op??

Xx

2 likes
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weekari
weekari
in reply to Ashlea2

For that type of surgery, it should be fine by a specialist. It's in the NICE guidelines. I'm glad you're getting referred. It might be good to hear what the specialist says about the surgery too, like you say, they might not see it AS risky.

I've been following this thread as I think I'll be making a similar decision soon. I've had 2 MRIs to plan my surgery and the specialist team as discussing my case next week to plan. I've already been told a gastro surgeon is involved so I'm expecting this type of decision.

It's so tough. The idea of a bag just terrifies me. I feel I'd rather deal with anything but that... But I'm sure that's not really the case and having a bad may be worth being pain free and a good quality of life.

Good luck with it. Xx

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HellyLlewelly

I have indeed pet and I'm home clear and dry. I had a Hysterectomy so the femine organs are gone (I had 2 other conditions) but endo was excised off my bowel and rectum and other than the bowel taking a few months to settle (I was a bit up and down from constipated after surgery which is normal, you stsrt a Stoll softener like Ducolax on day 2/3 post op depending on pain levels I started day 3...goung for the first few times is painful as you still have the gas they use to fill out your abdomen to inflate it so the surgeon can work comfortanly.

Then after a month I maybe had more urgency than before and needed to go No2 right there and then so running to the toilet but that all settles. By month 3 I had no stand out issues. I have vastly improved bladder function so much more control and can be out shopping and realise I have not had the urge to go even after hours and a coffee! I would have lost 1 x ovary anyway in surgery as it was to badly stuck to my pelvice but I chose to loose both anyway as I had my family complete and a high miscarriage rate.

****Please note prior to this I spent January and February pain ridden in bed and my menses had got to chicken fillet size clots and to go No2 during menses was like labour all over again. I stsrted getting odd new symptoms like finger joint cramps and stiffness, a dead arm on relaxing, water retention in my fingers and joints, fatigue, anxiety, depression...I could go on...

I believe if your quality of life is so that you can no take it any more, surgery is your next option, injections and coils are the interim solutions they throw at you to try to follow their check list of options.

Some people with extensive endo cope better than those with it mayne on just one organ, everyone is diffetent.

I almost assume you are in quite horrendous pain as you have it in lots of places.

Everyone has a different pain tollerance, go with your gut and with what you feel you can do, take the best solution that correlates to what you can COPE with in your life .

I was verging on being a abscent mum so needed to do this for myself and my baby.

Good luck hun

H.

X.

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Ashlea2

I’m glad it all worked out well in the end for u ☺️ how long was ur wait for surgery?

I’m hoping an endo specialist will agree that the op is the best way forward as I haven’t had a positive reply back regarding the coil.

Xx

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HellyLlewelly

Lol - 17 months and still waiting vua the NHS thays why we were forced to pay for my hysterectomy privately.

I live in northern Ireland we are in a beds crisis, we are on trauma plus cancer surgeries only atm so routines are pushed to the back and often canx if on that morning a trauma or new cancer diagnosis comes thtough.

We are the eorst affected as we have less professionals per population head and still the same NHS issues across great britain.

The coil would be fantastic for you if you coukd tolerate it, it is supposed to be settled after 4 to 6 months. They may try to insist you try it.

Do you have painful sex or any other cercical conditions in my opinion if you do it will probably feel too painful for you.

Let me know how you are doing.

Helly.

X

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HellyLlewelly

It's very bad in Northern Ireland I waited 9 months and lost hope wheb I was told another 22months wait approx...its a small surgical community over here. We took out a loan and I had to pay £5k for my hysterectomy with an endometriosis surgeon specialist.

I was bedridden for 2 months and couldn't take it any more as I couldn't manage looking after my child. We are paying it off over 5 years!

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