Pains getting worse even started physio... please go away covid 😪 I want to walk without limping again

[Thecrazypugglelady]

Literally fed up now surgery is more than likely to be on hold again. I just wanted a Christmas that wasn't spent on the bathroom floor. I'm determined to build my exercises up in physio and keep trying but walking is becoming more and more restrictive. I've upped my amitriptyline but not had any affect. Has anyone found a good anti depressant that has helped pain?

[Moon_maiden]

I hope you don’t have to wait too long. Still don’t understand the delays with departments that have nothing to do with covid.

Last few days I’m taking five amitriptyline (max from consultant) and last night I think I took one dose too much Oramorph. I couldn’t sleep because of the pain. So with you on pain/delays/ frustration. No way I could do physio, sorted out some paperwork and insides rebelled 🙄

Have you spoken to consultants secretary?

[Thecrazypugglelady in reply to Moon_maiden]

Yes I think its definitely an excuse bad before... bad now. Oh really I've got zomorph but I get chest pains on them but getting really tempted to just give them ago again. Had to stop every so many steps taking my daughter to school. Thank you for this I only take 3 got told that's all I can take so il see if they can be upped again just to sleep. 🤞things get done for us! Its sounds like we are both getting worse! Well I did think physio was making it worse obviously triggered by movement done so many things to prove this!🤣 but another thing to tick of the list. They did say give it a few goes and ring doctors again just dont like pestering the doctors when it's the surgery I need but all needs to be documented I suppose. There is one thing ...once everything is out I want to put it all in a box so I can check its e do free myself 🤣🤣🤣

[Thecrazypugglelady in reply to Thecrazypugglelady]

Oh yes and the consultants secretary keeps diverting me to the booking centre think she hates me 🤣🤣

[Moon_maiden in reply to Thecrazypugglelady]

I start with ‘sorry to disturb you again’ 🤣

I was livid when surgery texted me to say the pain clinic had let them know I was on the list for physio and psychotherapy 😡 I went down there to complain. I also phoned the pain clinic and they knocked those options on the head. So far surgery have avoided my request for a copy of referral. I’d already seen the consultant privately by this point. So sick of paying. Absolutely no way could I do stretching etc., bending down kicks it off, they don’t even know the extent and if uterus is stuck to bladder who knows the damage it could cause.

Some things I’ve gone along with ie Zoladex, painkillers to keep the piece and show willing.

Haven’t decided the limit on pestering yet 🤣 told GP I was sick of feeling like I’m begging to get help, his reply ‘sorry you feel that way’, started to bring up last year and realised his error as I was so ready to explode 😂, think the silence stopped him 🤣

So want that tick box!

[Thecrazypugglelady in reply to Moon_maiden]

Hahaha yes so true! It got suggested I got referred for Cognitive therapy behaviour I also refused my way if thinking as they like to call it will better when my pain and body is sorted. The diversions to deal with this disease is unreal. Yes sometimes you have to otherwise they aren't willing to proceed.

It's so bad that even paid advice is failing too. It's so frustrating! That's such a good idea to request a copy its your medical record! I'm so using that one too!

My MP is willing to chase but I know covid will be the excuse ... worth a try though

[Moon_maiden in reply to Thecrazypugglelady]

That’s not a bad idea, let me know how it goes with MP.

I’ll have to get MRI out of the way, that’s Saturday, small bowel, abdomen and pelvis. I thought it was just small bowel. Original gynaecologist arranged for a gastroenterologist to contact me. He said he’d hold up his side of the bargain and arrange MRI small bowel 😂. Not sure who added the other bits and what the ‘bargain’ was!🤣

Do you feel as if your insides are moving as one?

[Thecrazypugglelady in reply to Moon_maiden]

Hahaha bargain! Wow ask if its bogof or 2 for 1 🤣 good luck hopefully that'll give them even more reason to not just be left. Let's us know how it goes x

[Moon_maiden in reply to Thecrazypugglelady]

It is BOGOF! just had endoscopy phone for the following Saturday 🤣🤣

She got stumped when we discussed sedation, which I’d want, told her I have sleep apnoea and sedation at the dentist stops me breathing 😂 as long as I have oxygen it’s fine.

First gynaecologist thinks the not eating/weight loss isn’t all gynae related so GP has organised this one.

[Thecrazypugglelady in reply to Moon_maiden]

Ohno haha actual bargain 🤣 oh I hope it's all worth it good that theyve come through 😁 I've had a endoscopy before and I'd definitely want to be sedated it's not the most comfortable experience shall we say but then again I had a delayed reaction to semi sedation so I remembered everything 🤣🤣 but they are so fast. My weight loss is literally just down to pain x

[Moon_maiden in reply to Thecrazypugglelady]

I think as time goes on mine is more endo related, but as one GP in May was doing tests for cancer (negative), my GP was mentioning carcinoid the other week, at least they are ruling out things. It’s when you get things mentioned and google, you start to wonder. Lichen Sclerosus can cause cancer as well.

What can you remember about the endoscopy? I went in with my mum once, and she had some sedation, it wasn’t a good experience but she couldn’t remember anything after.

[Thecrazypugglelady in reply to Moon_maiden]

🤞it's not but yes good it's getting rule out! Well everything the banana throat spray I've got long neck (so they say) so my reflux is awful 🤣 but everything on the screen then when I got home I felt drunk and crashed out asleep for a few hours but my husband has a hernia/ acid reflux and has to have one every 2 years... doesn't remember a thing and really knocks him out. So I have to speak to the doctors to check what hes been told 🤣🤣 its relative quick literally as soon as they are in it's a quick biopsy and straight out just a bit of a sore throat after x

[Moon_maiden in reply to Thecrazypugglelady]

I wonder if it’s medical profession revenge 🤣

Should be easy enough. When I’ve had local with dentist it’s never worked well, I imagine the spray is similar. ENT says I have a dry throat, whatever that means. Had five injections once for a root filling, I was in tears and the dentist was a wreck, we gave up that day 🤦‍♀️ Hence sedation. 🤣

It would be much nicer if someone could just make a decision. I hate the way my medical record reads now.

Let us know how you get on with chasing surgery up. We can only keep plugging away.

I saw one of these A&E shows last night and a girl came in with severe abdominal pain. They did various tests and blood showed high lactate. I’ve read this can be a factor with endo. At the end it came up that they couldn’t find a reason for her pain. I’d bet it was endo though, she looked awful. I felt so sorry for her as you know what would have been said.

[Fooofs91]

I am limping too in my left side !!! It’s been 4 months now still waiting for some treatment / surgery . YOU ARE NOT ALONE. I am currently taking duloxetine instead of amitriptyline and tramadol to get me through university !! Hang in there sending hugs xxxxxx

[Thecrazypugglelady in reply to Fooofs91]

Ohno its awful sick of people stopping and asking what I've done to my foot! Like go away no I've still not had my op 🤣

oh I hope you manage to study ok?! Thank you I've actually not tried that one! Just good to know before hand pain relief just doesnt do anything so hoping a different or stronger anti depressant may be more effective

You too! 🤞xxxx