Hi everyone,
I have severe widespread endometriosis and need surgery. Although I realise the time surgery takes will vary I’d love to know how long your surgery for severe disease has taken or how long you’ve been told to expect it to take please. I’ve no idea what the minimum time might be and imagine it can sometimes be quite lengthy
Hey. I was told anything up to about two hours. I think (though a little hazy on the day) I was in about 1.5 hours. Had a fair bit of it as well. Mine was described as extensive and my appendix was also removed. Hope that helps?
Thanks Louise, that’s much quicker than I was expecting . How has your recovery been?
Up and down I won't lie. Just been signed off for another two weeks. Although I felt so guilty at first I definitely need it. I can barely keep my eyes open at the moment and had some pain in my left ovary reappear in the last couple of days. It's definitely having patience at the moment. Which isn't my best quality 😂Prepare yourself ahead of time. Wash your hair the day of, lots of loose clothing, get your house cleaned and find loads of rubbish to watch on TV. It'll take time so just be ready for that and don't rush your recovery
I’m sorry you’re still feeling rubbish. Please don’t feel guilty, you’ve had a big operation and your body is telling you you need to rest. I’m wondering the same as Lindle, was it severe endometriosis in a specialist centre?
Hi Puffing,I had surgery last year for stage 4. Took 6 hours. This was at a specialist centre with bowel surgeon also involved and appendix removed.
I knew it was going to be a long one and I asked just before I went down so I could make sure my family knew not to worry if they didn't hear from me for hours.
Spent 3 nights in hospital following surgery for monitoring, which I was grateful for.
Hope this helps. Good luck.
Thank you, I hope you’ve had a good outcome? Were there 2 endometriosis surgeons as well as the bowel surgeon?
Yes, that's right.I'm a lot better thank you. But it doesn't happen over night. You do worry that every niggle or flare is a return of endometriosis. My organs have already reattached, but my bad days are so few and far between that I'm not concerned at this point. It's been a year now since my surgery and for me it has been worth it.
Should point out that I have the coil and I am on norethisterone as well, so still managing the condition with hormones, which I am happy to do as it is keeping me off pain medication so my head is clear.
Hi lovely.
I had a lot removed as well as some problematic fibroids. I was down about 3 hours in total which was longer than they anticipated as I was initially told 1.5 hours. I was kept overnight. I’m coming up 4 weeks recovery - I extended my initial two week sick note but I’m going to attempt a phased return this week as I’m still needing an afternoon nap and pain relief. Mine was done at my local hospital which turned out to be a endo specialist centre. Lucky in that regard. My endo was pretty much everywhere - it was interfering with my bowel and bowel movements. I have seen some improvement already on that front.
As mentioned above : baggy clothes are your best friend. I invested in some cheap dungarees from Amazon for having to go anywhere in the first couple of weeks and mostly lived in my pjs at home. Hot water bottle/ heat pads are a must. I found once I was home and had a heat pad the gas pains were much more manageable. I did have some buscopan as well to help with the bowel spasms/gas . Plain simple foods; I struggled to eat a full meal for a good week. Lots of small snacks. Get some stool softener as your bowel movements maybe uncomfortable initially as the drugs may make you constipated. Pillows pillows and more pillows. I found it easier to have a pillow under my legs to keep them propped up when lying down.
I hope it goes well for you lovely and makes a difference.
Xx
Hi, thank you there are some great ideas for me there, it’s good to get them from someone who’s already been through it. I hope things start to improve for you very soon. How endometriosis specialists did your surgery?
Hello. Yes I had major endo surgery and bowel resection in 2018. I think 3 nights in hospital, then a minimum of 1 week bedrest. I took endone the entire team (I love that stuff). It was painful but not crippling. More of an emotional toll. Please take care and keep remind yourself; remember: this is a major surgery, and although it’s not as widely acknowledged as other surgeries, it’s major. So be kind to yourself, and congratulate yourself for being brave. And working towards a recovery / restoration of your special organs.
Thank you that’s so kind 🙂. Waking up finding Ive had a bowel resection is one of the things I’m worried about. Have you recovered well?
Yes. I will say, I was happy to be in hospital. My resection and surgery meant I had to be monitored by nurses all day. They took good care of me. You’ll need lots of love and care. I was sore. The drugs helped. Just make sure you take it easy, and also be happy that remedial surgery has taken place. The healing will happen quickly.
Hi Puffling1, my surgery involved my bladder & bowels… took about 7 hours. I had stents put in my ureters and didn’t need a bowel resection in the end but still needed a temporary stoma so it was quite a lot. X
Hello,I had surgery in March with an endo specialist and a bowel surgeon too because I had severe endo. This was my third surgery but first with a specialist. I don't remember the exact amount of time in surgery but I'd guess definitely under 2 hours. Recovery for me has been really difficult. Definitely take as much time as you can off work. I know everyone is different but do not go back to work before you feel 100%. I made the mistake of going back after 2 weeks after my first surgery and I ended up really sick. I also have adenomyosis so I still have pain and that's a whole other story. Good luck with your surgery, take your time and look after yourself Xxx
That sounds very quick for severe endometriosis. I’m sorry you’re having a difficult recovery. Have they said if they managed to remove it all?
I think if it's an endo specialist they are really efficient. My first surgery was a gynae Dr and it was over 3 hours. The most recent surgery was 2 surgeons and I honestly can't remember the time frame so I'm only guessing. Yes they removed all of the endo but I have also been diagnosed with adenomyosis which hasn't been removed.
Thank you, I hope you manage to get some relief from it all
Hi mine was slightly different I had a hysterectomy, very large fibroid which you would think I would realise tummy wise as it was 1 1/2 time the size of a newborns head. That was sat on my bladder, rectum and cervix. Also attached was my endo to everything it went from a 45 min hysterectomy to 3 hrs. The comment made was I didn't expect that. He also said because of scar tissue from previous ops he can't tell if he got all the cervix and because I suffer from Sjögren's syndrome I am now dry as an empty beer barrel. So last smear was a nightmare.I think it takes time if it's stuck to anything like mine but ask for reassurances and don't worry about doing that, speak up, be bold and ask. they know what they are doing. All the very best and take care.
I had full hysterectomy ovaries remove some stitches to bowel and bladder that took a few hours I was in for 4 days , it's been a 3 years since I had that done . I was last going in as they said they was unsure how long it would take .
One of mine took 5.5hours, another 6.5hours. This was excision surgery, very widespread endometriosis. It must depend how tricky it is to remove I imagine.
Good luck! xx
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