I am having a very low day and just want to know when I can expect all of this to start to get better.
I had excision surgery almost 4 weeks ago. I had stage 4 endo, which was all over my bladder, rectum, and every other place in my abdomen. I had it all fully excised and was expecting to feel great by now.
Unfortunately my pain is still bad like shards of glass in my stomach. I have tried to go for small walks and feel fine at the time but afterwards my body seems to react really badly and the pain gets worse.
I just would like to know if any one else out that has had stage 4 endo excised could tell me their recovery time. I am really struggling and just need to know that this pain is going to end.
Thanks
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hltz
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Hey, I had similar, it took me about 5 weeks to recover enough to go back to work. But still about 4 months to feel my new "normal".
An extensive excision can often take about 5 months to fully recover so you know what your new "normal" is, that's quite often when your specialist should do a follow up appointment to discuss next steps. But you should be feeling quite a bit of improvement by 6 weeks.
Things I found:
Depending on when in your cycle you've had surgery changes your next cycles; longer / shorter / sooner / later / heavier / lighter
Your uterus goes into shock as it doesn't like being moved around so it can take a while to recover, that often causes more symptoms when we have cycles after our excision surgery
My specialist mentioned our bodies can't tell the difference between endo pain and removal of endo pains so we think it's all the same and nothing's changed, it has it'll just take time.
As your sounds like you're still in a lot of pain perhaps call your specialists secretary to arrange an appointment as soon as they can as you really need them to check how you are and find out what you can do to help. It sounds like your body isn't recovering well.
Thank you for your reply farahziya. I am disappointed to hear that my recovery is not as it should be. So good to hear from someone who is able to give me an idea. My specialist just said he had removed all the endo and pretty much sent me on my way for a follow up in six months. Will perhaps wait until the 5 week mark and if no improvement I will contact my specialist. Thank you so much for taking the time to respond x
Also I have not had a cycle as I am on depro injection which I’m due to have again next week but My specialist didn’t say if I should continue this or not.
It could be your body not handling that well, perhaps check out the side effects? Sometimes something like an operation which is invasive and serious can cause the body to react to hormones / chemicals differently.
You could try going without but you may have a period, it could make your cycle normal for a month so you can see what the recovery symptoms are and what the side effect symptoms are? Not sure may be best to check with your GP if that's actually okay to do with the injections.
My endo specialist doesn't like any of his patients going on hormonest after their lap until he's seen them at 5 months; he says hormones don't help to see what the new "normal" is, and he likes to see their real symptoms as most hormones have side effects which can often be confusing while recovering and sometimes hinder recovery as we need our usual hormones to help heal. He says during that 5 months if excision is performed well by an experienced specialist there should be very little chance of regrowth. He says unfortunately most surgery is laser / ablation / diathermy performed by general gynae so their surgery isn't as thorough as they won't look round the bowel or bladder so could leave some endo thus hormones are given to "manage the remainder of the symptoms", when in fact they're to manage the symptoms of the possible remaining endo.
Hi I’m about the same sort of time and still getting pain, especially after eating, driving or other activity all round abdomen area. Have tried going back to work this week but not lasted full day and have to lie down at some point.
I think it maybe improving slowly, but was told 4-6 weeks. I’m inpatient 😂
Hope you feel better soon. If your concerned though speak to GP. Sounds like you had quite a bit done.
Mine just suggested more painkillers and said that the insides would have been moved around and need to settle.
I can’t believe you have gone back to work already! I couldn’t imagine having to work. I am exactly the same with pain after eating and general activity. Make sure you take it easy too! I think I expected a miracle recovery and for everything to be amazing after surgery - which means it’s hitting me harder when it’s not. I hope you feel better soon - thank you so much for your response xx
I was beginning to think the eating part was weird, it’s horrible feeling, can’t eat much at all. Losing weight, not a bad thing at the moment.
It’s a desk job, have worked at home from laptop as well. Thought I’d be ok but can’t sit upright for long. They haven’t bothered to do any hoovering at work though, I didn’t feel like catching up with it either 🤣
I know you have put anyone with stage 4 endo but everyone’s recovery is different regardless of stage I’ve had 2 open abdominal surgery’s and there were girls that have been walking about a week later pushing pushchairs where as I’ve took months to recover it’s each to their own when it comes to recovery it can take up to a year to fully recover internally and some even more so please try not to push yourself relax as much as possible I know it’s hard when your an active person but you have to go with your body x
I understand !I was very depressed after my latest surgery and it’s good when you have the right support.i had people telling me to get up and go out when my body wasn’t ready !my support group said I did well getting out and about 3 month post op.though it felt a very long time they said some people aren’t even up and about till 5 month and some people can do it in a week.i know exactly how you feel as I’m also a very active person I take part in dance and walk everywhere I go this condition can be so deliberating when your already so active as it stops you being the person you are
Also I will say this the girl who pushed herself really damaged her stomach on the outside so goodness knows what she did internally although she Dosent have endometriosis it did not heal properly on the outside because she was active too soon
OK, first off you’re doing well. Getting up keeping mobile. Well done you!
I was off work for three months but that was more due to side effects of Anaesthetic and previous severe brain injury. However, each week I noticed MASSIVE improvements fitness and mobility wise. I was able to walk further and was back more towards a “normal” life.
Things like coughing, hiccups and some random sudden movements and I would feel all the internal stitches gather up. So it takes a while. A lot of the injuries are internal and our poor bladder and bowels etc all still need to continue to work as normal. Try and keep to a healthy balanced but relatively simple diet, ie don’t suddenly have a hot curry one night (unless that is your normal). The less strain they have to go through the better.
I’m now 9 months post surgery and there are still occasional days when I’m reminded of my surgery. Other days I’m OK.
Keep the positive a least the crap is now outta you!!
Thank you - you’re right. After many years of suffering I think I just thought this would be the miracle cure and I could have my life back again within weeks. Thank you so much for your advice. I’m sorry to hear what you have been through - makes me feel positive to hear your experience though xx
I feel the same I had my first surgery 3 weeks ago and have still got right pelvic and back pain which I had before I had the surgery and all I keep thinking is has the surgery actually worked or is this still surgery pains. I’ve had surgery done on my bowels, bladder, lots of ovary work specially on my right ovary and behind my womb. I was doing great and now the pain is pain again and I’m not sure if I’ve done too much too soon or it’s just normal very frustrating. Can’t remember what is was like to be pain free.
I have rested for two days now. It seems to be working in taking down the level of pain I was in - but I can’t stay lay down forever! Plus every time I go to the loo is agony. Although the lying down does seem to be aggravating my pelvis pain. Have you been offered any physio at all? I am going to try and push for some as I think it’s something that should be offered to us. Your pelvis is such an integral part to your natural movements. I really hope you start to see some improvement soon. Here to listen if you want to keep me updated. Let’s hope our surgeries have been successful and we can get our normal lives back x
I’m glad resting has helped. It does help but I get really stiff when I sit down doing nothing so have to get up and move around. I would definitely go to physio if I was offered it as it definitely would help I will ask my consultant when I see him for a follow up in 3 months or so. I also find yoga helped before my op and caster oil packs but I don’t feel ready to do that just yet after just 3 weeks I’ll be scared in case I pulled something inside. I really hope the pains ease. I’ve come off the pill too the same time as my op so it’s a double strain on my ovaries maybe that’s another reason why I’m still in pain and maybe my ovaries are starting to try and work again I'm not sure. I hope you get back to normal soon too. I just keep thinking my consultant said he got rid of all the endo and cysts so why am I still in pain.
I had stage 4 excision aswell back in August 2019 so 6 months on and I'm still under review from my surgeon as I'm stil in pain and swelling often and shooting stabbing pains up my ribs and pelvic area, still doing tests etc but yes is still on going hun I don't know what's happening internally, but I'm attending a pain clinic my hospital offered me hopefully by next month.
So I just suggest you keep in touch with your surgeon and keep them informed of how you feel as you also had extensive surgery.
Thanks for sharing your experience. It’s so frustrating. I think all hospitals should try to do more follow up sooner and give more after care advice. I was just given a discharge sheet and sent away. I will try and get in touch with my consultant although it was a struggle trying to get him in the first place - will probably be another two years before I get to again! I hope they manage to get rid of your pain once and for all. Xx
Hi. . It took me at least six months to recover. . It was awful. I had far more pain after surgery than I ever had before surgery. . .I thought I would never recover and was worried like you are but I recovered.
My advice in retrospect is to rest and allow the body to heal. . Don't panic. . Don't try to rush recovery .
I tried lots of things, pro biotic, really helped. . Vitamin c gluten dairy and meat free diet. .
I got courses of antibiotics which really helped but I don't know why. . I didn't have infection but they helped the horrible burning and sharpness when I walked.
I don't know if just time helped or any of the above.
Bottom line, the body needs time to recover and that seems to be different for everyone how long that will be.
Thank you so much for your response. So helpful to hear you’re experience and timeline of recovery. If I know what to expect it can at least improve my mental health during this recovery time. Also glad to hear that you eventually got a full recovery - here’s hoping. Again thanks for taking the time to write and share this with me x
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