Lower back & abdominal pain

[Gingernut74]

Hi,

I’m hoping someone can advise as I’m getting confused 🤷‍♀️ I think with my pain whether it’s connected to endo or not?

I’m 46 had a total abdominal hysterectomy nearly 2 years ago, was fine for a good few months then pain was back!, had a Diag lap in jan this year where adhesions were removed, things separated again.... pain free for a good few months but all pain back, consultant mystified why in pain again especially in pelvic areas when everything has been removed? So am I?? But just keep getting lower back pain which I had with the ovulation & period pain I always got? Can I bring on pain & this severity through stress? Wondering if I really do have reoccurring endo pain again or if I’m imagining it or causing it by being anxious/stressed?.

Asked my endo consultant if I have to put up with this in my 50’s, 60’s & 70’s etc or does it wear off after menopause & with age & he replied I can’t answer that?? I’m starting to feel like I’m going a bit crazy but know I shouldn’t & to trust myself, body & intuition as it’s all proved correct right up until now?

Thank you 🙏

[Moon_maiden]

I would say I’d hope you are wrong (aiming for hysterectomy to get rid of everything), but if it’s already returned once, you know your body and how you react to this problem.

Is the consultant 100% sure they got it all last time? I’ve read if they don’t get it all it can still cause issues, how true that is I’ve no idea. They really don’t know enough about the condition.

Maybe a second opinion?

[Gingernut74 in reply to Moon_maiden]

Thank you for your response, I’m now under the first endo specialist I saw some years ago as was sent to another specialist for a second opinion?, he’s now requesting all my notes on ops & images to have a good look at & will make another appointment.

When I asked if this will ever wear off with age after menopause he said I can’t answer that??, but surely I’d know if you still had ladies in 50’s, 60’s & 70’s that you were still seeing?

[Moon_maiden in reply to Gingernut74]

I’m 52, was diagnosed last December and hadn’t got to menopause and still having periods. I’d obviously left it way too long over the years. It surprised the consultant that he’d had to consider it as a diagnosis, but was sure. He said it could be another 5/6 years for menopause. Try not to think age and future, (hard to do) but getting it sorted as soon as 🙂

[scouterpuff]

This is very aggravating, but even menopause is no guarantee. I had laparoscopic surgery and a hysterectomy in my early 50's, and at age 58, thought I'd be free of this. According to one of my more knowledgeable doctors (and we've all had plenty that were clueless), endometriosis can continue to produce its own estrogen and remain symptomatic. I am done with surgery at this point, so I'm on hormones to counter what we assume is going on with me now. And I still have bad days.

He also told me so much of the disease can be microscopic, so when they go in, even the best surgeon is bound to miss some.

Oh, and stress certainly doesn't help. Some days, my mother can literally have me doubled over in pain!

[Gingernut74 in reply to scouterpuff]

Thank you for your response, I really don’t to keep having surgery as it creates more adhesions - can I ask please what hormones are you on to counter this? As I have no idea what other options I have or there is to try and manage this?.

Thank you x

[scouterpuff in reply to Gingernut74]

Sure, no problem. I started out with 10mg Norethindrone, but it's been reduced to 7mg. It helps, although I still have some bad days regardless. And, you do tend to gain a little weight when you're on it. I got sick of taking it and decided to go off of it earlier this year. Shortly after that, I realized that it really had been helping me. Hello, full-out pain. Your doctor will have to decide what he/she thinks is best for your situation.