Since I stopped triptorelin injections in Spring I now have one week of every month where I feel very run down, fluey and feverish and my already excruciating daily pain increases. I get a bleed plus rectal bleeding too. The pain is absolutely horrendous.
I’ve had 4 surgeries and only option left is hysterectomy but specialist is reluctant to do this as thinks it will be highly likely in would make my daily nerve and bladder pain worse.
Feel completely stuck!
Written by
Lily1986
To view profiles and participate in discussions please or .
I’m currently having some gastro checks to rule out other things as gynae thought symptoms too much for endo, but gastro thinks it is! Had CT colonoscopy (clear) back in June, MRI small bowel last week and endoscopy this Saturday.
It’s still important not to just put it down to endo if things are getting worse. No one will commit to it being just endo at present.
It might be worth having a chat with your GP about it. If your under a BSGE centre ask about speaking to the pain specialist, or a referral from GP.
Aw thank you 😊 I’ve emailed the secretary for my specialist today. When I spoke to the GP a few weeks ago and they said it’s because of bowel endometriosis and just left it like that but I’m having quite a few issues with my GP surgery at the moment and on the verge of changing.
My mri in the summer confirmed bowel involvement.
I had a sigmoidoscopy in January but bowel was poorly prepared so wasn’t completed properly and it really really hurt and symptoms got so much worse since then.
My specialist has referred me for pain management but haven’t received an appointment letter but I guess that’s on hold understandably due to covid situation.
What did your pain management recommend? How long did you have to wait for an appointment?
Just spent another full day in bed but hard to sleep or get comfortable and only had 4 hours sleep last couple of nights and maxed out on pain relief allowed.
Unbelievable how the pain can increase to levels I thought impossible.
Thank you for your advice I really appreciate it and good luck with your treatments and results xxx
I’ve thought about changing GP and then better the devil you know, and they can put up with my pain, etc 🤣
Contact the pain clinic and ask about the referral, where you are in the system. Don’t put it down to covid as these things go astray. If you haven’t been allocated a slot speak to GP to ramp it to urgent or gynae secretary in case they can help.
I’d gone to A&E and spoke to the pain nurse, she gave me Tramadol and they sent a message to the GP to do a referral to the clinic. Unfortunately although GP sent a text to say they’d done the request, they’d only asked a question, not an actual referral. I found this out a couple of weeks later, got stroppy at them and booked to see him privately. His go to is Amitriptyline for nerve pain and he’s ok with the Oramorph once or twice a day. Now under as NHS. He was great as I asked a question on a Friday and he called back on the Monday.
I’ve still got the Tramadol as it doesn’t cause drowsiness when driving. Turns out GP had a message from pain clinic from them doing a referral and texted me to say I’d been put on the list for physio and psychology, I’ll leave it to your imagination how I reacted to that one 🤣, so far they’ve ignored my request for a copy of the referral!
Ohh yes I remember reading about that mix up 😂😂 can’t imagine why they’ve not given you a copy of the referral haha🤔
Ah that sounds like a good plan medication wise. I’m on Pregabalin which has helped a bit some days more than others but every month it is a battle to get it off the GP. I will chase the pain referral up tomorrow as I’ve recently learnt the hard way about things going missing. The dictation of my appointment with the private urogynaecologist went missing from 7 months ago!! So I’ve never received the letter, the physio referral hasn’t been made, haven’t started the bladder medication and my GP obviously thinks I’m making it all up haha.
Luckily the pain referral was done by my endo specialist and I received a copy of the letter but might look into doing that privately to speed things up.
Spending more and more of my life in bed and it’s very depressing. Xx
You’ve got your work cut out chasing those, let us know how you get on, don’t let GP blame covid 😀. Let us know when you get it all sorted, 🤞won’t take long
With you on the GP thinking we’re making it up. The same GP who didn’t do the pain referral 😂 managed to screw up my request for Amitriptyline. Firstly no one had read the consultants letter putting it up to five, I get a phone call and explain why I’ve taken more. Then other meds are done but not that, I had yesterday to sort it, they’ve had since Friday. Then she does it for 50mg instead of sticking to 10 which allows flexibility. They sorted it in the end. They complain patients take too much, but literally throw it at you 🤣
Haha this sounds familiar. I’ve recently had a good system going with Echo pharmacy because I’m unable to drive due to pain (and medication) anymore it is easier to get delivered.
My heart sinks whenever I realise it’s one particular GP dealing with my request as I can guarantee problems.
So I made my request a few days in advance to allow time for last weekend, time for echo to process and deliver. Despite numerous phone calls she refused to sign off the prescription till yesterday. So I was like that’s fine but how do you suggest I take my morning dose? And what do I do for the 2-3 days it takes for echo to deliver?
So she’s now had to give an emergency prescription but only for 2 days and it’s now the weekend and got to get my mum to help out (again) by cancelling whole thing with echo and running around til we find a pharmacy with it in stock.
When you are in so much pain you can barely stand up it’s a lot to deal with.
That with your dosage is quite bad, did they even tell you they were giving you the higher strength? They’re supposed to help us not make life more difficult!
A while back my above mentioned gp gave me stronger dosage without telling me and I was doubling up without realising for a week so had to experience an unpleasant withdrawal too (partly my fault for assuming they were same as usual and not reading the sticker on the plain box they arrived in).
They also just took tramadol off me despite consultant letter saying I need it to take as and when required for my worst days. Which explains why I’m feeling the pain more intensely on days when daily zapain dose does nothing.
I’ve started investigating new GPs as mine did get rated worst in my town but worried all my notes and copies of letters etc will go missing.
That’s awful service, it shows that there is still doubt how bad it can get. I tried Pharmacy2U once, but it took days to arrive and I cancelled. I suggested to them that they have an option to pay for next day delivery.
The only way I found out about the strength was I logged in to see if it had been done, otherwise I wouldn’t have known, wonder what five 50mg would do🤦♀️ I’d screwed up with Oramorph last week one night as it was and took extra by mistake, pain made my memory go and misled me what was in the consultants letter. I did sleep well though 🤣
Send yours a copy of the consultants letter with a request for Tramadol. I think admin just add letters to people’s records with no GP seeing them.
It’s lucky I’m normally on the ball and sensible as I have a stash of Oramorph, Tramadol, codeine, Naproxen! 🙄
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Does severe endometriosis mean infertility ? With so much pain
In so much pain still 
Rant!! So much pain :( 
So much pain 😢
So much pain 
