I have stage 4 endometriosis. It’s on my bowel and rectum. So I have been to see a number of specialists and because it is so severe and it does keep coming back they want to take everything away.
I am having a full hysterectomy including ovary removal. Part of my rectum is being removed and bowel surgery.
I am really scared for the operation and then also the recovery time after. I would like to talk to anyone who has had the same thing please
Thanks
Hello, I’m sorry to hear this, I feel your pain and dilemma. I’m in the same position and have been putting off the op for two years but can no longer cope so will be having it done in the near future. It is scary. Are you having it done soon? Also isn’t the surgeon a specialist?
I have been suffering for so long I have had a few ops and it keeps coming back so badly. I have my op booked in and he’s my specialist is my surgeon.
I’m 8/9 weeks post surgery. I was lucky they managed to do the bowel bits via laparoscopy and a small cut. Recovery was much better than I expected. I was very tired and the pain was manageable with Ibrufen and codeine. I did need some antibiotics after a bleed at 2 weeks but in all recovery was good. I had obviously days I couldn’t get off sofa and days I had more energy. At 6 weeks I suddenly got energy and started feeling my old self. I went back to work this week and even though I’m in bed by 8.30 I’m coping well.
My husband took the first week off mainly to look after my 8 year old then my mum and dad came. She did all the cooking, cleaning & ironing for me and then went home week 4. I must admit I started driving a bit earlier than recommended but it was literally school and back which was exhausting. I tried to have a little walk every day and slowly built it up.
I hope that helps but please ask if you want to know more.
Ok mine is going to be open bowel surgery and not sure how they are going to do my hysterectomy and I also have a Nodule in my vagina that needs removing. I’m going to have a bag for a while also which I’m scared about.
I feel for you that was a high risk for me and it was the first thing I checked when I woke up. Best wishes I hope it goes ok for you xx
Did you have any massive changes to your appearance and hair etc after a hysterectomy?
Must admit I’ve put on weight but then that’s down to the lack of activity. My belly is more wobbly which is not surprising after the multiple surgeries I’ve had. And I think I still have some swelling there as my bowels have still not settled post op.
My hair is an odd one it is a lot thinner but then I was on zoladex pre op and my hair fell out with it. It does fluctuates between dry and greasy so struggling to keep it nice. I’ve cut it short for me as I’m so sweaty and find my hair was always wet around my neck.
I’m moody even on synthetic HRT which scares me. I get cross very easy and yesterday I was tearful over not a lot.
I have put myself on a good multivitamin and started calcium tablets. I’m also on evening primrose oil at a high dose to try and calm me down. I have started a probiotic to calm my gut as all the antibiotics and surgery haven’t helped. Sadly I’m still getting pain there which worries me they didn’t remove all the patches/nodules of endo. Weirdly I still get the feelings like I’m going to come on which is weird but I presume that settles 🤷♀️
I find the whole menopause thing scary as I’ve got no real control over it.
Ok they are going to put me on hrt after my op. I’m worried about the whole thing from operation to recovery
It’s tough I was very stressed with it all and I waited a year for the op which made it worse. Stay strong - prepare for the things you can control and then the day will be what it will be. Remember the op is down to the surgeons and I’m sure they are specialist in there area. They’ve done all the checks and until they get inside it may not be 100% clear what there going to do. Only advice I can give is make sure you have someone to help post op for a week or two - longer if you have little ones. Prep some easy meals in the freezer and buy in laxatives, ibrufen, paracetamol and co codamol.
Try some relaxation everyday to try and help you to get mentally prepared.
Best wishes xx
Thank you x
Are you on long term hrt now ?
Until I’m in my 50’s I think!
How old are you now? Did you have any side effects ?
I’m 42 - no real side effects that I can think of.
Did you ever get any strange things Beofre your op with endo and low blood sugar feeing and shaky ?
Yes I did feel a bit like that, I was poorly for several years prior to surgery and was unable to work the past year. I feel a new woman now 🤞🏻 it will last
It’s horrible like all of a sudden I will get really shaky. Visible hand shaking and then feel a bit jelly like.
Bowel resection with total hysterectomy 
How long did you leave it until your bowel op after diagnosis?
Post op Endo excison and bowel resection. 
Op!! Bowel prep 😩 
