Just diagnosed

Hi all,

Im 29 and just been diagnosed with stage 4 endometriosis. I went in for keyhole surgery which ended up being a 5 hour open surgery as they found my bowel attached to my uterus with adhesions and i had a 5cm cyst on one ovary and a 7cm on the other. Im still healing from the surgery but having my first period since the surgery. Im still in alot of pain and being sick the same symptoms from the last 2 mths (i was admitted to ward both time due to high infection markers and to control the pain). Im scared this is not going to get any better and not sure what to do. Has anyone else had similar symptoms? Will this get better? Feeling helpless x

5 Replies

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  • Hi Lulu, very similar to my situation though my cysts were slightly bigger, and they took out an ovary and tube too. But the recovery is along one. I was 4-5 months to be free from the op pains and able to lift up toddler without it hurting, took a further year to build up the tummy muscle strength to be what it roughly was before the op. It is a much longer recovery than those for lap ops. The op cuts through 7 layers of muscle in the tummy plus all the work done inside the body too - it is a huge surgery.

    Remember too that everywhere that hurt before the op is what they have now been working on, so the same locations have now been traumatised and the same nerve endings have been irritated so you should expect to be feeling the same types of pain for quite some time.

    Take painkillers as and when you need to, but rest assured eventually all the post op swelling and soreness does ease off a huge amount eventually. Just takes patience and you will get there.

    Certainly not something that can be rushed or you'll just have set backs delaying your recovery.

    Plenty of rest, mixed with regular short walks pottering about the house till you are ready to venture further on your walks. Do not risk lifting anything heavy for at least 3 months - it will hurt you.

    There is great advice on recovery on the adeno website

    adenomyosisadviceassociatio...

  • Hi Lulu.

    My op sounds just like yours. I came out of hospital and after a week &1/2 I felt I should be back to normal and so I started ironing and housework which made me really I'll, so I went back to the Dr as I felt so rough, and after looking at my hospital notes, she told me not to do a thing, that I'd had major surgery, just like you, she told me how intricate this op was for the surgeon to perform, hours and that I needed to continue with the medication, which was a lot, and to just practice being a patient.

    When you leave the hospital, they don't really tell you about the recovery time, and when you read the posts on this site, people talk about going back to work after a week or two, so you think it's normal to be feeling ok after a few weeks, but it's not, we're all different, we've all had different surgeries, so we can't compare ourselves to others.

    I stopped feeling guilty and rested as much as possible, it took me a good 3 mths before I started to feel better, not 100%, but better.

    So rest as much as you can. Xx

  • Thanks both x i ended up bk in a&e yesterday due to the pain and being sick all day! They explained i will still get pain as they were not able to remove all the endo during the op without damaging my bowel. Been told now to wait until i see the consultant in 2 weeks. Its just frustrating as i dont know what this means for my fertility etc x

  • I had surgery for similar reasons. What should have been 1hr 45 mins took 4 and 1/2 hrs. After maybe a week and a half I decided to start doing light housework- washing up, ironing etc, but standing for any length of time just made me feel extremely ill, in pain, and exhausted. It's maybe week 7 now and I'm only just starting to 'feel myself'. I nearly put myself back in hospital by trying to do things too soon. We've all had diff types of surgery so recovery time is diff for all. Don't feel guilty (like I did). Your health is more important. I think I read you were waiting to get 'feedback' from your consultant/surgeon. Make sure you write down any questions beforehand depending on what you want etc. I wanted to know if I still had tubes or could start IVF etc. When I got in there and saw the 'pictures' of my insides from the surgery I got very emotional and couldn't think or say anything. My partner got an email and asked if we could email with any further questions etc. I am about to have another period and despite them removing most endo and cysts I am still in 'moderate pain'. Not as bad as before, but still not a huge diff to be honest. Hoping next month will be better. Take care. Please rest as much as possible. They say the body can heal it's self given time. I never thought I would start to feel normal again after surgery. Will be thinking of u at your next apt. Hope news is good. Stay strong. Take care x

  • It will get better. Give yourself time and you'll see an improvement day by day. Don't give up hope. I was in ur same place. x

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