Manager issues and endo clinic issues! - Endometriosis UK

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Manager issues and endo clinic issues!

jennabird
jennabird

Hi all,

I’ve not been very visible around here but I have found responses helpful in the past.

I’m currently signed off work due to pain caused by endometriosis. I was seen in the endo clinic in September and was advised they would look at my scans etc more closely as it would be a big surgery with potentially more damage caused. They also said they were referring me to the chronic pain management course and increased pain medication. By November I hadn’t heard anything back and so I rang them. Within a few days I had a response “carry on with current pain management medications” which currently are sitting at hefty doses of 4 kinds, not including paracetamol and the usual guff.

Fast forward to now and like I said signed off work because I’m so sore and feel like I’m now getting the same pains from my left scarred side in the right - it’s been 2 years since my laparoscopy. My GP is very good and is writing to them to ask to see me again especially as they haven’t referred me on to the pain management course. I just don’t know what else to do here because the consultant doesn’t take calls my gp is doing what she can but I’m still stuck. And the frustration, pains and this feeling of being stuck drags my mood down and causes considerable anxiety, which was all made ten times worse when my manager raised her voice and essentially spoke to me like a child when I called to tell her I couldn’t make it to work. I told her I was struggling and was met with a big sigh and now she is just ignoring me anyway. I work in health care myself and it wouldn’t be right to go in like this when I can’t concentrate and I’m tired out by just having a shower if I manage that!

I know all of you are going through the same thing and have been for years, I think like many I’m just fed up which I’ve said before. At the clinic they asked what my best outcome would be, I burst into tears and said just not to feel this every day. I didn’t think that was unreasonable.

Anyway, therapy session over for now - I’d be grateful for any suggestions or even just sharing your own experiences and how you’ve coped with them.

3 Replies
oldestnewest

Could your GP refer you to the pain management course?

Is there any possibility of a private pain specialist consult to perhaps accelerate the pain management side of things?

I was completely at my wits end when I saw mine and I totally had a meltdown after seeing him I was such a mess so I really empathize. He did actually find a drug that reined my symptoms in and I did not react to adversely. He also pointed me to a pain physio and pain cbt specialist. And there was a possibility of injections which I've not done for fear of aggravating things further.

I'm exploring tens and physio for pain.

The cbt stuff you can actually start to try do yourself largely. Useful resources for me have been:

Coping with chronic pain by Neville Shone a chronic pain sufferer himself who did a pain management course.

Also retrainpain.org which I liked a lot and paintoolkit.org

Thinking of you xxxx

jennabird
jennabird in reply to Starry

Hi - thanks for taking the time to reply. I’ll have a look at those sites today, I’ve also ordered a book that looks at nutrition for endometriosis as well as I really need to take responsibility for the things I can change rather than just depending on the medical lot! I think the GP has referred me back to the clinic as they stated they were referring me onto the pain management course last time, which includes some of their staff so didn’t want to cross over and because I need to be seen there anyway it makes sense to get it sorted with them (I think!).

I have started to look into the private side of things but a while back I went private to see a gastro specialist and he was so dismissive of my symptoms, I actually wrote him a letter back which was completely ignored ; he told me to try amitriptyline and that’ll solve it and I had told him during my consultation I’m already on it... so I’ve just been a bit dubious about going elsewhere even though I’m getting nowhere at the moment. When I’m sore and tired I just don’t have the concentration to look into things or push for treatment so I’m hoping this current flare up of symptoms will sod off so I can get on with it!

I’ve been looking into the physio and tens side myself - it would be good to hear how someone else finds it, I’m just not sure which tens machine to go for!

Thanks again - funny how you can feel so supported by people you’ve never met.x

How are you feeling and how is work.It is so frustrating when bosses don't understand and it is always the usual female troubles.

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