Coping with endo

[ARashley]

Hi, I'm 22 and had my third laparoscopy in September to be told I have no active endometriosis but am in so so much pain, I can't eat, can't sleep and am struggling at uni. I don't know how much more of this pain I can cope with, what do you all do? Xx

[mollymm]

Hey lovely. When you say there was no active endo in September do you mean that they have found endometriosis before? Sorry I'm a bit unclear. Also did you have your lap done at a BSGE specialist endometriosis centre? That's really important. Even the usual BSGE centres aren't enough as they're specialist gynae centres but not endometriosis specialists. At a specialist endometriosis centre that's all the team works on all day every day, so they're more likely to find it. What pain meds are you on? Really hoping you feel a little better soon. Xx

[ARashley in reply to mollymm]

Hi, yes endometriosis has been found before. I've got the merina cool and am on codeine but it doesn't touch the pain I'd never heard of a BSGE centre before and am deffinatly looking into that thank you! Xx

[mollymm in reply to ARashley]

I don't know if it'd help you at all, but Gabapentin has worked for me quite well. I had loads of damage to my organs and can't take opiates and was in huge amounts of pain for a very long time till I had my last operation. I did take codeine if I was desperate (but risked not being able to pee because opiates stop my bladder from functioning because it was badly damaged by the endo) - but like you it didn't touch the sides. Gabapentin works differently by changing the way that the nerves send signals to your brain. I don't expect it works for everyone but my specialist advised me to try it and it gave me a lot of relief. Good luck. Really hope you get it sorted out soon xx

[ARashley in reply to mollymm]

Hi, I've tried Gabapentin before and my body didn't react will to it xx

[Endo101]

Hi did your symptoms improve after your first lap initially? (I'm also 22, at uni and was diagnosed with endo this year)

[ARashley in reply to Endo101]

Hiya! The symptoms sort of eased for about 6months but then came back in full force. Unfortunately my gp doesn't have any answers so just sends me on my way to deal with it. I hope you have more luck! Xx