Pain Team Referral

[GreenQueen-99]

Hi Everyone,

When I saw my consultant back in May, she suggested for me to go on to the pill to control pain and symptoms alongside the Mirena coil.

However, after discussions with my partner it was decided that maybe the pill was not a good idea, due to my already mood swings and previous worsening mental health when on the pill before having the Mirena inserted.

The consultant also suggested about having a referral to the pain team. I was wondering whether anyone has done this? And whether it helps? What kind of things can they do for you?

The pain is worsening for me, where I am only having a max of 5 days a month with minimal pain, so would like to give it a go if others have found it useful!

Thanks!

[Tillyfloss]

Hi. Hope you are doing ok. I also couldn’t face the pill and the mood swings from the 6 months I was on it . I was referred to the pain team and it really helped, I wasn’t on the right thing for my endo ( I have bowel and it was irritating it even more) and they made changes to how I took it and it really helped get on top of my pain. Alongside it I also did the endo diet which helped to. After 9 months I had surgery and am luckily not needing any medication at the moment. Xx

[GreenQueen-99 in reply to Tillyfloss]

Hello! Thank you so much! I’d you don’t mind me asking, what kind of things did they do for you?? I’m just struggling to get in top of pain now, and am needing to consistently take pain killers. What was the endo diet too?? I’m literally willing to try anything! 😅 I have already had the surgery a year ago, but I do feel it was more severe than made out to be! X

[Tillyfloss in reply to GreenQueen-99]

Hi sorry for the delay we’ve been away and the WiFi was terrible. How are you doing? The pain team were great, due to the extent of my endometriosis I was in constant pain not just certain times so they had me on tramadol, amitplime, paracetamol and buscopan and I was to take a base level every day and increase it as my pain did. If this didn’t help it was to the hospital for morphine and checks as I had some complications. I always took medication as the pain built up by which time they said it was to late and I was better having a low dose with more when needed. I found it really helpful and they got me through the 9 months to surgery. The endo diet I used was from the endometriosis healing through nutrition and fertility by Diana someone ( I can get you the details if you would like them), I was very strict for a few months and then very slowly tried a new thing to see what I couldn’t have which for me is pasta most bought cake anything with seeds on and a few other things that bought on pain. I still find if I eat certain foods it triggers pain but paracetamol and buscapan usually do the trick. What did they do for you at the surgery? Xx

[GreenQueen-99 in reply to Tillyfloss]

No worries! Did you have a good time? So It’s currently to a point where I’m getting around 3-5 pain free days a month. This last week I have been in bed most days due to the pain. I’m managing with paracetamol and ibuprofen and occasionally codeine. I just do not want to feel like a pain bothering them all the time. My next appointment is in October, so am going to wait to talk to them then. Just in the mean time keep a pain diary etc. I already take something called mebeverine 3 times daily to help with cramps (similar to buscopan). Definitely going to see if pain team will take me on. They sound like they’ve been really helpful to you!! I have found something similar, white breads and pastas and nuts etc really increase cramping so attempt to avoid if I can! I will definitely look for that book though! Might be worth a try’ I had surgery over a year ago now… because of COVID I was referred to a private centre, with no speciality of endometriosis. I only got a brief summary after the op too, just saying that it was stage 1 mild and I’m being referred back to my normal specialist centre. Since then, my consultant has changed twice, I now have a very lovely lady, and she suggested back in May to have a 6 month review and potentially have surgery again, but she seemed hesitant of that option!

[Tillyfloss]

We did thanks, wasn’t actually our holiday ( we go tomorrow) but my dads been poorly so we went so the holiday wasn’t lost ( the advantage of wfh is you can do it anywhere 😀). The problem with surgery is it can make it worse with the scaring 🙁. They might suggest other medication as for me coedine was making it worse as I’ve got bowel endometriosis. You should definitely push for referral as only 3-5 days pain free isn’t normal. The food thing does really help me, took a while and the whole family tends to be on it so I’m not making multiple meals 😀 . Do you use hot water bottles for very painful days? Xx