Update on my journey

[Swats]

Hi ladies,

So it’s 10 wks since my opp for severe endometriosis which had spread to my bowel. I had Endo for about 5 years to my knowledge and got diagnosed last year. I was told before my surgery there was a chance of hysterectomy or a colostomy bag and possibly a large cut.

My opp went really well and I managed to get away with a bowel shave and removal of Endo through keyhole. I was obviously so pleased by this.

I’ve been back for my check up at the hospital and they are so pleased with how it went they have signed me off. The surgeons were also pleased they managed to carry out all that work via keyhole too considering how bad my endo was.

My body is now retuning back to normal, the hot sweats have just about stopped and my hair has stopped falling out. I’m starting to sleep better and I also had my first period too which is the first one I was pleased to see, as it meant my body was functioning right again.

I’m glad I now have chance to get my life back as Endo had put my life on hold for a while. I just wanted to share this with you all, as I know when I had tough days and didn’t know what was Gona happen to me it was nice to hear some positive outcomes too.

I’ve added some pics as I thought this may help

xxx 😘

[Vicky2708]

Thank you for sharing your story - I too have stage 4 Endo with my bowel being stuck to my womb. My current Consultant is not keen to do surgery to separate the organs and thinks a colostomy is a possibility... Currently awaiting a second opinion from a specialist centre. Your story gives me hope ❤️ hope your recovery continues to go well xXx

[Swats in reply to Vicky2708]

Hi Vicky,

I’m glad it’s given you some hope. I hope your doing ok? If there is anything u want to ask me feel free. I was on the injection prior to my opp. I had a bowel surgeon as well as the gynaecology surgeon. My bowel was stuck to my womb and I had a mass of Endo. Have u seen a bowel surgeon too? xxx sarah

[Vicky2708 in reply to Swats]

Hi Sarah, I have my good and bad days - don't we all though ☺️ that's really nice of you to offer, I may just do that. Which injections were you on? I was on Zoladex from December to June but I'm not allowed anymore. I haven't seen a bowel surgeon yet but hoping I will do at the BSGE centre xxx

[Swats in reply to Vicky2708]

I was on the GNRH injections. They were good for my pain. But had really bad mood swings on it. My endo wasn’t picked up on a CT scan that was always clear. My MRI scan picked it up and then I had a colonoscopy camera then. That showed polyps and inflammation too. I hope you get some answers soon. But I’m here if you need to ask me anything xxx

[Vicky2708 in reply to Swats]

I found Zoladex was a huge help to my pain - I had a MRI last June at which time they brought up Endo. I'd never heard of it before then. Thank you again <3 x

[JeanOsborne]

Hi, was your op at a BSGE centre?

If it was , they shouldn’t be discharging you for 2years.

You should be filling out questionnaires at 6,12& 24 months.

[Swats in reply to JeanOsborne]

I’m not sure about the questionnaires and revisits but if I have any problems I can go back when I need to. I’m not 100% sure about it been a BSGE centre. I know they have done an amazing job for me and I’m happy with the outcome x

[gemarthur23]

Hi your journey sound alike it will be similar to mine. Had a lap in June diagnosed with stage 4 bowel bad and bladder maybe involved to. Just had mri 3 weeks ago. Been refered to the mdt team? Not been told anything else and the pain feels so much worse now they have disturbed it i am really startung to struggle emotionally with it now too. I need answers to my questions and a date to work towaeds i hate not being in control or knowing what's going on your post has helped me xxx

[Swats in reply to gemarthur23]

Hi Gemma,

I’m glad it helped. If there is anything u want to know feel free to ask. Yes the not knowing was the worst part for me as I felt my life was on hold and I didn’t want to plan too much. After my camera my pain got worse as I felt they had disturbed mine. I had such an emotional time with it all. Keep strong and just remember your not alone xxx

[gemarthur23]

Thank you xx

[AllthatGlitters]

Thanks for posting this and glad it’s all went well for you. Hope you continue to feel better. I have my womb on my bowel too, to what extent I am not sure. Did you get told that during your op they might have to get the bowel surgeon in? 💐🎀

[Swats in reply to AllthatGlitters]

Hi,

No I was lucky my operation was already planned with both gyno surgeon and bowel surgeon to operate together. I had tests with both doctors to confirm my symptoms b4 hand. I hope this helps. Hope your doing ok and not in too much pain x

[AllthatGlitters]

Thanks swats, yeah I am alright at the mo, slight belly pain but use to that now! x

[Swats in reply to AllthatGlitters]

Well I hope that eases for you. If there is anything you want to know. Feel free to ask xxx

[AllthatGlitters]

Lovely thank you Swats, you are a star 🌟 x

[AllthatGlitters in reply to AllthatGlitters]

I noticed from other posts that people mention shoulder pain, is this to do with the breathing mask they put on you? x

[Swats in reply to AllthatGlitters]

Hi,

Yes I had abit of shoulder pain, but mine wasn’t as bad as i thought it was Gona be. It’s caused by the co2 gas thats left in your abdomen at the end of lap. It gets trapped and moves up the diaphragm then affects the shoulders when you sit up. Peppermint tea helped and if u can move about a little this will help. X

[AllthatGlitters in reply to Swats]

Great Swats, glad it went well for you x

[louisepercy2000]

I find so many ladies posting their negative experiences with endo. I’m so thankful you shared your experience on a positive note!! This has made me somewhat hopeful for my laparoscopy tomorrow. Get well soon! Xx

[Swats in reply to louisepercy2000]

Hi Louise,

Glad it helped.

Gd look with your opp x

[louisepercy2000 in reply to Swats]

I woke up 1 hour ago. Feel like crap but feeling quite positive. They took a biopsy so let’s see what happens xx

[Swats in reply to louisepercy2000]

Hi, hope your ok and your opp went well. Try and get as much rest as you can. Thinking about you x

[aw2901]

Great news that it went so well 😊 I’m due to have surgery at the end of the month - my biggest worry is will I be able to go to the toilet normally afterwards?!! I’ll obviously have the picolax before the surgery but do you have to take similar medication afterwards ?? Thanks

[Swats in reply to aw2901]

Hi, sorry for the late reply. If you have had your surgery now I hope it’s gone ok for you. No I didn’t have to take anything after my surgery. If there is anything else I can help with. Feel free to contact me x

[aw2901]

Had it done yesterday left ovary and tube removed and I think right with bowel shave they unstick things too not seen Doctors yet but having a bit of a meltdown today really tearful and I think the morphine is too heavy for me. Did you feel like this or how long till you felt normal?? Sorry for the rambling

[Swats in reply to aw2901]

So sorry to hear your having a low day. It’s understandable after what your going through and your hormones will be all over, plus the meds will affect how u feel too. Things will get easier for you. I found drinking lots helped and peppermint tea is good to help the inflammation. Hopefully u will get an update from the doctor soon. I was lucky to have gotten away with gas and air and no morphine. Keep your chin up I’m here to help x

[aw2901 in reply to Swats]

Thanks you’re advice really is reassuring while I’m in the middle of this xx doctor from team came today they took left ovary but had to leave a sliver as it was so stuck to bladder. Took left Fallopian tube unstuck everything and cleared what they could and did a bowel shave. Stopped morphine this afternoon so hopefully I’ll be a bit more with it and these messages will be less of a ramble. Nervous of the first pee and bowel movement tbh !!

[Swats in reply to aw2901]

Don’t worry at all, I’m here to help you if I can. I had a bowel shave. It took me ages to wee. They said I couldn’t leave hospital till my bladder was empty. They kept checking it with a machine. I heard you get like that due to anesthetic. I did drink a few sachets from the docs to help me after for bowel movement etc. Was already on them due to my Endo and bowel trouble. Did they say how long your in hospital for? x

[aw2901 in reply to Swats]

Probably go home tomorrow or Friday - I still have catheter in at moment. Just had a pharmacist visit about discharge pain relief but not been out of bed yet !! Can’t wait to get the next few days out of the way - I think once this morphine haze lifts I’ll feel better. I really hope I notice a difference when I’ve healed - I’ve been in pain for so long it just becomes the norm xx

[Swats in reply to aw2901]

Well I have my fingers crossed for you . Hope things pick up for you soon. Up to now I’ve not had any pain since my opp so fingers crossed. I’ve kept to the gluten and dairy free too which has helped me x

[aw2901 in reply to Swats]

Well it’s been two weeks today and I’m getting there !! Taking things slow and pottering around the house with a few short chaperoned trips to the supermarket but nothing more strenuous!! It’s a bit sore and uncomfortable and the most pain I get is before I need to use the bathroom (both) !! Constipated but am using mild laxatives and softening tablets. Drinking gallons too ... I think I had it in my head I’d be over this in a week but it’s knocked me sideways. That said I’ve used nothing stronger than a paracetamol or ibuprofen and I’m staying optimistic that this op will have finally made a difference. Thanks for your emails when I was in hospital- they really helped 😊 x

[Swats]

Hi,

Glad to hear your getting there. I know it’s frustrating but it will take time. Just have to slowly build yourself up. Your doing really well xxx

[Sfr204]

Thank you for sharing especially the photos as it gives such amazing context and wow you’re doing so well! Keep going with your recovery 😊 really delighted for you! X