Not just endo?

[Adoradearheart]

I have had little let up from my surgeries for endo. Now I'm starting to wonder if it could be something else as well.

I feel like my doctors literally just see the diagnosis and say all my symptoms are that. Oh it'll be your hormones.

Have you had another diagnosis AFTER your endo was confirmed? And how did you get them to take you seriously?

Not that it matters much at the moment, with all referrals off the cards for the time being.

[Moon_maiden]

Hi

Understand where you’re coming from. Although I’m not convinced the GP’s believe the letters from the consultant about the endo. After mentioning a few weeks back that I wasn’t eating much, I filled in the econsult yesterday with as much info as I could and spoke to someone today. Blood test including coeliac. Did surprise a bit, but can rule it, hopefully. At least I got the ball rolling. I did get some online GP advice about possibilities.

It could still just be all endo symptoms still.

Good luck, persevere

[Adoradearheart in reply to Moon_maiden]

Thanks honey! I hope you get to the bottom of it all. Yeah there is a possibility it could be endo still, I'm just worried that if I write everything off as endo I could end up missing something else, and doing more damage!

I think I'm going to try to change doctors surgeries and see a fresh pair of eyes (that and my current ones have lost 2 of my tramadol prescriptions now and that's just concerning)

[Moon_maiden in reply to Adoradearheart]

Definitely don’t write off other possibilities, drs will do that enough. 😂

How they’ve lost two prescriptions is beyond me. I wish they’d give more than a week or two weeks supply, I’m going back every week for one thing or another and then having to go out, go figure!

[Lily1986]

I’ve had similar issues and my consultant believes I have permanent nerve damage and scar tissue damage as a result of endometriosis xx

[Moon_maiden in reply to Lily1986]

Have you had more than one op? Just wondering if it would take more than one.

Did you ever feel sort of shaky when you were active?

[Lily1986 in reply to Moon_maiden]

Yeah I’ve had 4 operations and although they’ve provided some relief it has never got rid of the daily pain. But from what the consultant said nerve pain can be caused by the damage endometriosis has caused plus the damage caused from any surgery to remove the disease.

I often get shaky. Yesterday I just went out in garden with the dogs and my legs were shaky afterwards and then in evening my arms were shaking. Seems to be a regular occurrence. Started taking pregabalin and it hasn’t done much to help yet but doctor said we will review in a month and maybe increase dose.

Only down side is the medication on top of the codeine I take just means I feel like a zombie most of the day and currently signed off work & worried I won’t be able to return.

I wish you the best of luck xxx

[Moon_maiden in reply to Lily1986]

Hope you manage to get it all under control as well.

Consultant mentioned there could be nerve issues after the op, last year I kept feeling shaky with movement from abdomen and out, arms particularly. GP didn’t really believe it, positive it was just ‘stress’. Not so bad after op.

Snap on the work front at the moment, trying not to think about it the current circumstances and just relieved about furlough.