Excision or leave it

[May246]

Hi,

Just looking for some advice and to hear people’s experiences. I was diagnosed with endometriosis through an MRI scan a few years ago and my pain has been bad daily since. I have the mirena coil. I have been offered excision surgery but have always been too scared to go ahead after hearing some bad experiences of others or the pain becoming worse after surgery/ it growing back so quickly.

Has anyone had the surgery and now have reduced/ no pain? Or their endo hasn’t grown back?

Thank you!😊x

[EndoCoeliac_Woman]

Hi!So. My pain was constant (no fluctuation). Hige bloating, fatigue, pelvic pain etc. They did an mri and saw that my uterus and ovaries were stuck to the bowel. Had excision. Felt okay 3 months. Had pain back. They put le on the progesterone only pill. Less pain. Terrible and constant nausea. Changed pill. Still had fluctuating pain and might sweats. Got off the pill. No period for 6 months. The best 6 months of my life. Period started again. Pain with it. Back with another pill.

Bottom line. If the pain is constant you probably have scar tissues that make any bowel movement painful and cause chronic inflammation. Removing some might improve the pain. But then endo is still activating when your estrogen goes up. And cause pain and, on the long run, more scar tissues. So. To prevent them, doctors advise the pill. Otherwise you will be doing surgeries every 5 years (if you're lucky).

I'm not a fan of either treatment ls. I think they all come with a cost. But that's what modern medicine offer to us.

Ps for me sticking to exercise and a healthy diet (also known as antinflammatory diet) did most of the job honestly. I didn't need to go back to the pill. But I was scared it might damage my ovaries.

Sending you lots of hugs

[May246 in reply to EndoCoeliac_Woman]

Hi! Thank you so much for replying. That is really helpful to know. I think from most responses and posts I see, maybe I’m better to just stick to non-surgical options at the moment. Bless you! What a nightmare.. how annoying nothing is a permanent fix. What exercise do you do if you don’t mind me asking? Whenever I used to exercise I would flare up so it put me off but think it would be a good idea to start again.

Sending you lots of hugs back x

[EndoCoeliac_Woman in reply to May246]

Hi. I'm currently going to the gym 3 times a week. Mostly machines. Some free weights (deadlift with Barbell and dumbells). Before starting I do a 10 minutes mobility routine with yoga poses (cat cow, cobra, inch worm, etc) to mobilise the spine and relax the muscles of the abdomen. Then abs. Then weights. Then stretching. It keeps my pain under control better than anything else. When I'm not going to the gym I go for a 40 minutes brisk walk with a friend. If you have nice woods close by I recommend that, it cleares out your mind.

[Sunset-lady]

I didn't know I had endometriosis until I was 50 and they tried to do a hysterectomy and found it all glued. My lifestyle in my 30s had kept all pain at bay but peri menopause hit me hard and I now need a complex hysterectomy. Do everything you can to keep it under control when you are young because it's tricky with peri menopause xxx

[hellybaybee]

I’m amazed they offered you that, they wouldn’t give it to me unless I was prepared to go through ivf which I think is shocking. I had surgery in 2017, best thing I ever did, everything felt normal for the first time - the pain, going to the toilet, everything. You have to do what you think is right - my pain was unbearable before surgery - if it was me, I’d do it all over again and the surgery wasn’t too bad. It’s 8 years later and I could do with having it removed again - I have a 4cm cyst on my left ovary which is causing me constant pain at the moment but before that I had no problems post surgery but I had a great surgeon tbf