Just worrying after total peritoneal excision

[Summer_3]

I had total peritoneal excision, with ligaments removed, organs and nerves shaved just over a month ago, after years of unexplained pain. After the surgery I had great results, was in pain from the surgery but saw improvement.

The first few weeks I was over the moon and felt positive that my life was getting back to normal. But now I aren’t seeing any further improvement and some days I am back crying with pain.

I can’t take anti inflammatory tablets as they make me ill. So I am still on codeine everyday and odd oromorph now and then. So it’s disheartening that I am can’t function through the pain without codeine.

My surgeon did say it will take a year to know what pain I am left with and I know I am still early days but was hoping I would no longer be on strong pain relief.

I am meant to be going back to work in the new year (now) but I don’t know if I can manage it! I am so upset with myself and don’t want to be ill in bed for another year. Over Christmas I have tried to put a smile on my face and enjoy it but it is so difficult 🙁 At the back of my mind I can’t stop wondering if the endometriosis has spread somewhere else.

Has anyone else had this surgery or similar and able to put my mind at rest. Inform me how long till they were back working or how long till it all subsided. Also should I have the doubt in my head that I have more endometriosis grown. I fully trust my surgeon did a great job and got rid of any he saw. But obviously could only shave my bowel and bladder and there was a lot of endo there. My womb and ovaries were the only things that looked okay but I worry that it could be growing there or on the inside.

Thank you in advance and sorry it’s so long, all my worries just keep building up!

X

[Penelopeel]

You poor poor thing. This disease is so miserable ! Thank god one day menopause will be a cure!!! My own experience was having peritoneal stripping where they took all the peritoneum away but left my uterus and ovaries. My endometriosis is sort of all over my peritoneum. Anyway after 6 weeks I got pains back and dr said won’t be endo pain. But it felt the same. It then did settle down for about a year but sadly it did come back and I feel he missed bits And it can hide anywhere and just be a small spot to cause lots of pain. I saw a general surgeon as I had all sorts of bowel symptoms with upper abdominal pain/ diarrhea/ but all my scopes and ct abdomen normal. I was in pain and felt like I just have to live with this and suffer. But then I saw a endocrinologist who just does hormones for women and he just put me on a high dose progesterone tablet ( I also had a mirena) . In 2 days I felt much better and could manage the pain. That may not help you !!! But I guess if the pain isn’t settling then what about trying progesterone . Also a pain killer like amitryptyline or gabapentin or pregabalin can help.

Sometimes the pain pathways are

Damaged by the endometriosis and the surgery and you get pain even when the endo has gone. Those meds help nerve pain a lot. My doctor had me on progesterone plus the amitryptyline . After a while I stopped the nerve pain one and the progesterone kept working. I am thinking of you.

[Summer_3 in reply to Penelopeel]

Thank you for getting back to me. I was on the prostap for 3 months before the op but as the endo was already in place, I did not get any relief. The prostap is still in my system after 4 months and still no period.

I didn’t know that you can still get progesterone tablets. How are you finding them and is the Mirena okay?

I tried gabapentin a few years ago and i didn’t get on with it :/ but my body might handle it better now. I am at pain management in a few days so might ask to try amiryptyline. Also before my op injections were suggested to put pain relief into my nerves. So that might be an idea, as like you said the endo and surgery can damage it.

Thank you for getting back to me and telling me your experience. It is good to know what options I can try. X

[Jpreston]

I think it is still very early days for you. My pain began to ease after about 8 weeks but took maybe 6 months until I stopped getting more improvements. I had excision of a lot of endometriosis. It’s frustrating but give yourself time and then you can make a clearer judgement on things.

[Summer_3 in reply to Jpreston]

Thank you for getting back to me. Did it take 6 months for you to start getting back to normal. If you work, how long did it take you to be fit enough to go back?

I knew it wouldn’t have been instant but wanting to get my life back ASAP. But the more I try the more it pushes me back. It is great that your pain eased after 8 weeks! It would be nice if mine did then too as my family are not happy with me on painkillers and telling me to stop.

Thank you for again and it’s nice to know your healing time as it will give me a guide of what to expect.

How are you now after your excision if you don’t mind me asking? Has your endo returned or has it worked well for you? X

[Jpreston]

I am a gardener so very physical work. I had my op last Nov (2016) and started back gardening late March. I also have 2 children so I was running around on them well before that, I’d say maybe around 3 months I was able to do most things.

Although my constant pain was much improved eventually after the op, it would come back with each period so my consultant thought it possible adenomyosis. This November I had a vaginal hysterectomy and he excised again as wasn’t sure if endo had come back or if it was scar tissue. Turned out on histology just scar tissue, so no re-growth which is great news. No adenomyosis picked up on histo either. So I’m sort of back to where I was last year, minus a womb which I’m glad about. I still have the pain now at 6 weeks post op that I had last time. I’m hoping it settles like before and then without periods it won’t keep flaring up. But who knows, I’ve learnt over the past few years that everybody’s endo is so specific to them it is hard to compare but also your own pains and recovery is unpredictable and difficult to phathom out. My ovaries have always been clear too. 4 weeks is very early, things will change and although it’s so frustrating you have to just see what your body does. Have you got a follow up with the consultant? I would manage your pain meds as you feel you need them, you will know when you feel ok to reduce them a bit. Fingers crossed things begin to settle for you x x

[Summer_3 in reply to Jpreston]

So it does take sometime for your body build strength. I am a nursery nurse with toddlers, so it’s also very physical. If I worked in an office I could manage that but I know I aren’t fit enough to be looking after people’s children as of yet. It’s handy to know a rough timescale.

Yeah, I was told if I was in pain after a year post op then it could be adenomyosis or I could develop it later on. Oh my, I am sorry to hear you didn’t get any answers but like you said at least you won’t get pain with your periods!

It seems like you said everyone’s endo is different and that seems one of the reasons it’s hard to diagnose :/

I had a consultation 11 days post op but my surgeon has retired. But if I have any problems in the future I can get intouch and he will advice me the best he can. On my last consultation though he explained about recovery is up and down, that endometriosis could occur on my reproductive organs, try to always keep my ovaries and about adenomyosis.

Thank you again for reassurance. I hope you heal well from your op and the best of luck for your future, hopefully you can be pain free! Xx