Has anyones Endo returning after hysterectomy?

[Jasmin24]

It's been awhile since I've posted.I got an MRI report back, after urologist found abnormality after bladder stretch.

The MRI found endometriotic deposits by the rectosigmoid colon.

I have extensive surgery and hysterectomy in January. Having a bowel shave, rectosigmoid colon as well DIE within the pelvis. I know the consultant said they maybe a little left, but I feel I went through all of that, and still recovering.

I'm a little deflated, to say

Anyone else experience this?

I just don't know what to think, or how to process it.

[Simo7]

Endometriosis isn't always a one operation, fix all job (sadly!) It can leave you feeling completely deflated when you have an operation and not much changes after. I deeply for you, it’s not fair. Sometimes it may help to view it as a process; you’ve got the bowel sorted and now you have to work on the other bits. I don’t know if this helps much? You can aid recovery with diet changes and complimentary therapy. Maybe Cognitive Behavioural Therapy may help with coping with it? I find changing the way you view your illness can help cope with it mentally, it can be such a debilitating disease. Wish you well 🩷

[Marcia71]

I had to have 3 further surgeries after my hysterectomy to remove endo. I was incorrectly put on oestrogen only hrt so that accounted for first op but others were due to deep endo being missed. If you need hrt then have combined hrt - both oestrogen and progesterone. But yes unfortunately endo can carry on after a hysterectomy and menopause. Finding a specialist bsge centre is key for treatment in such complex situations. And be prepared for lots of people to try to tell you that endo can’t grow after a hyster. It can and fighting misbelief is v hard. Take care.

[Jasmin24 in reply to Marcia71]

Thank you, i just needed someone howy have experiencedendo after hysterectomy...I'm on the combined HRT, was I told due deep infiltrated endo, pretty much complex endo, and specks can be left. I'm under BSGE, bit it's not even been a year!

I'm constantly being told by my consultant, its less than 5% if it returning over a 2 year period.

The fight has been almost 3 decade battle, 4 surgeries, but to never get use to the disappointing blows, when you are told its back.

Thank you, at least I know there are other members that are going through the same.

[Marcia71]

I unfortunately know a lot of women with endo after a hysterectomy. I was in worse pain as soon as I woke up from my hysterectomy- I later learnt endo had been sewn into the vaginal vault. And even in that excruciating pain I kept being told it’s v unlikely to be endo so soon after an op! I wasn’t with a bsge centre at that time but next ops after were.

[megiiva in reply to Marcia71]

Hi Marcia,Jasmin,

I am 44 and 2 years ago after long push on doctors and heavy bleeding, pain during sex I was diagnosed with Fibroid which grown 2.5cm in a month and they operate me at 6.5cm. But never felt completely better after the operation. Six months later been diagnosed with Sibo and endometrioma which burst.They refused to operate because lots of women have it anyway. My specialist surgeon said he will open via laproscopy to take biopsy from the cyst, this operation was 9 months after the Fibroid one.He was shocked, I had stage 4 endometriosis. Couldn't believe how did he missed it 9 months ago,or did it grown so fast? Now 9 months after the 2nd operation, which was diagnostic bit turn endometriosis execution, still have the pain,the bbloating, and all other symptoms, I don't have even a period as I'm in late perimenopause. Now discussing the next move hopefully Full hysterectomy with ovaries removal as well for around April, at least year later,I've been trying all natural, holistic and everything to get this slow down, but is not looking good.I know hysterectomy may not be my answer, but I'm confident that I will try and give time on everything every single step the way and will try.If it does not work then at least I've tried them all step by step. Hoping wont be the case and my Endo won't come back,. So keep it up,whatever decision you make will be the right one. Please do come back and let us know. Xxx

[Marcia71 in reply to megiiva]

I’m glad you’re getting some help. Two things I’d say - make sure they excise all endo when they do the hysterectomy. And secondly if you need hrt has combined hrt whatever an endo person tells you as less likely to make endo regrow. Oestrogen only hrt (the usual for women after a hysterectomy) has been shown to deactivate endo more. Good luck for op.

[megiiva in reply to Marcia71]

Thank you so much for the tips