Stage 4 surgery questions

[Bondi64]

hi ladies

I’ve got stage 4 deep infiltrating/possible bowel lesions etc . Known for just over a year now and initially opt for no surgery and back to back pill- which for the most part silenced the excruciating pain/period pain.

However on my journey ive had to battle ibs pain etc and daily challenges if ‘ is this ibs, is it endo… is it both… getting fedup of being attached to hot water bottle… is this my life forever moments?!

So have toyed with the idea of meeting with consultant to fully understand surgery implications.

Sometimes on here i read too many sad/negative stories of where things havent gone well in surgery , complications etc and its scared me to not consider surgery but i appreciate everyones journey is complex and unique.

But… for those that have had successful surgeries, What has life been like after it, what positives have u seen- pain relief? Quality of life etc?

Theres also general questions around surgery logistics..

i live alone so how does it impact work, exercise, needing support, bathing, driving etc to manage my expectations

Thanks

[lizh87]

Hello, I’m currently recovering from my 3rd laparoscopy and bowel resection where I had all my stage 4 endo cleared and bowel detached from my intestine due to endo adhesions. I can honestly say it’s mentally made me feel so much more positive to know it’s all gone. I have been prescribed Ryeqo to try to stop periods until I try for a baby. I would really recommend having the surgery to get your body to somewhat back to how it should be. I have had a positive experience and you will be fine, yes it’s uncomfortable but the short term pain is worth the long term gain. Unfortunately it’s a disease we may have to live with forever. I never thought I’d be positive about endo but the surgery has made me feel 1000% better. Do it you won’t regret it.

[Bondi64 in reply to lizh87]

Thanks good to hear your story

[Moonglo]

Hallo, you might want to ask about logistics getting to and from the hospital. They’ll probably want to make sure you have a friend or family member (chaperone) to take you home when leaving the hospital, or they might refuse to do the surgery.

You’ll also need help for at least the first few days after surgery, I remember I couldn’t move very far, let alone stand for very long. Hopefully all you’ll need at that time is sleep, the loo and a little food.

[Bondi64 in reply to Moonglo]

Thanks, my mum will be around to help/pop by i just meant in general i live alone so good to know thanks

[Moonglo in reply to Bondi64]

Good to know, I didn’t want to make assumptions. I hope your mum spoils you rotten 😁

[ciaotuffy]

I'm 2.5 years post hysterectomy +ovaries removed. I'm now 51 with 2 kids already so the age and almost in menopause anyway factor helped me decide to move forward with the surgery. I too was scared to death and read so many horror stories about menopause and surgeries that didn't work, etc. I had stage IV endo and adenomyosis, terrible pain and bleeding each month. I had a previous surgery to just remove 1 ovary that had an endometrioma. But the endo kept growing after that surgery and I was in emergency 5 months later from excruciating pain and bleeding. That's when I knew I couldn't live like that and had to do something.

Post hysterectomy, I've been doing great. I've gone through the menopause symptoms (but would have soon any way). But I just feel so much happier and more relieved, more free- no pain, no having to worry about heavy bleeding on vacation, no cramps. As I was doing my research and scared out of my mind about surgery gone wrong, I read a comment on one of these message boards- that many of the people on the message boards are on here because they are seeking advice, having issues, etc. If your surgery went well and you're feeling great, you're probably out living your life. So don't let it freak you out because it sounds like So many people had surgery problems. There are probably plenty of people who have had successful surgeries that don't necessarily come back to talk about it. (that comment put things into perspective a bit for me)

My recommendation is to get as much information as you can about the options available to you. Depending on your age/wanting babies, etc, you can make your decision as to what is best for you. You will get through it and you will be ok. Feel free to private message with any specific questions. Take care and good luck with your decision.

[Bondi64 in reply to ciaotuffy]

Thankyou

[Loveneige in reply to ciaotuffy]

Hi, sorry to jump in but I'm just wondering how long it took you to recover and go back to work. I'm waiting for hysterectomy, endo out, bowel surgery and endometrioma and possibly remainly ovary (I'm 50)Thankyou

[ciaotuffy in reply to Loveneige]

I had both of my surgeries during covid so I was working from home afterwards, just on the computer. I wasn't driving for 2-3 weeks afterwards, and generally I tried to take it easy, no heavy lifting, walking slowly, no housework, no heavy exercise, etc. for probably a month. I carried around a little pillow to hold on my abdomen when I had to cough or laugh and in between the seat belt in the car. Get more rest so that you can recover well. Hope everything goes well for you, take care.

[Kieraface]

I’d get as much housework and batch cooking done as possible. As you live alone you won’t be able to do these things easily so prepping beforehand may make things easier. Take all the pain meds and make sure to rest as much as you can. Maybe move things to a comfortable height too so you can avoid bending as that may be very uncomfortable for a wee while after the surgery.

Good luck! Hope it helps with your pain x

[Fizzypoptastic]

Hi,

I was in the same boat as you re surgery but what made me decide to go for it was the fact that the endo wouldn’t get any better with just hormonal treatment and needed some sort of intervention. (I’m 43 & suffer with stage 4 endo & adeno)

I’ve got nothing but positive things to say about the surgery. It was the best decision ever. I wish I’d had it done sooner. It’s given me my life back.

You will need support afterwards to get up the stairs and with cooking etc for a few days. I went to the local hairdressers to get my hair washed as I wasn’t allowed to get soap on the incisions. That made me feel loads better.

Good luck with whatever you decide to do. Xx

[Bondi64 in reply to Fizzypoptastic]

Great thanks.