Endo surgery (stage 4) advice!

[elles3]

Hi everyone!

I got diagnosed with stage 4 endometriosis by MRI 3 years ago and have been managing with running the pill through, and then just codiene since stopping the pill. It's deeply infiltrating in my bowel and I also have a large endometrioma on my ovary. They offered me big scary surgery back then, which involved taking part of my bowel away and giving me a stoma for a while. Obviously, shell shocked with the diagnosis and not knowing much about the disease at the time, I declined. But 3 years on I've finally had enough of being in so much pain and gone back and spoken to a new gynaecologist about my situation.

I'm going for another MRI soon to see how/if it's changed at all and have also agreed to a laporoscopy to remove the cyst and check my tubes (we are planning on trying for a baby so doing everything to help the situation!). I'm also being referred to another endo specialist to discuss the big surgery again, but she said it would be the same as what was suggested before.

I just wanted to ask for advice from others who have had surgery, both the lap and the bowel removal... I'm quite scared and keep thinking I've made the wrong decision, but then the pain gets so bad and I don't want to live like this anymore... It's such a headspin!

What was it like? What was recovery like? All the questions! Any advice would be amazing. Also, if anyone is in Hertfordshire and has had any endo specialists via NHS I'd be very interested!

Thank you lovelies!! Xx

[willywalk]

HiI’m waiting for this surgery

I’m having it done at Colchester and I’m scared as well.

But it has to be better than what I’m going through now

At Colchester hospital they have an endo unit I’m with Mr Whitlow .

X

[USgalwthendo]

Hi I haven’t been through this so can’t comment specifically. But I do have stage 4 endometriosis diagnosed via Davinci robotic surgery 7 years ago. One tube was practically obliterated which explained why it was so difficult to get pregnant. Nothing on my bowel or bladder but everything else reproduction wise was gummed up quite badly with adhesions. If my surgeon had proposed a bowel resection or need for stoma back then I would have been alarmed understandably. I would just advise getting a second and even a third opinion first if possible. Just to be sure there are no other alternatives first. If that’s the case then I’d say go ahead with it as surgery is the gold standard to removing the adhesions and helping make a good environment for a pregnancy. Also to ensure the surgeon has experience with bowel endometriosis so they know what to look for and get it all the first time. Best of luck to you

[Petalgirl]

My story is so similar I've just been diagnosed, by MRI, with stage 4, on my bowel too, and multiple endometriomas on each ovary. I was fastracked through oncology so haven't actually spoken to a specialist yet, that's in July, but I'm terrified I'll need major surgery and bowel resectioned. So no advice I'm afraid, but I think I'll be going through with it that's what they recommend, because I've been struggling with painful periods for 6 years, and I'm ready to be free of them. Good luck x

[My_adventures]

I am in a similar situation too right now. Just been diagnosed with stage 4 endo and my uterus is attached to my bowel with two large cysts which have formed kissing ovaries.

Just waiting for a consultant appointment to get more information on the surgery as I've been referred to a bigger hospital.

It's all of the unknowns isn't it.

Good luck when you go for it, sending you love.