Endometriosis associated pain syndrome is actually a real thing and us ladies aren't crazy!

Hey ladies, apologies for being pretty quiet lately! After my second lap I've been feeling down, stressed and have really struggled to go back to work. Luckily I'm back to posting here with you lovely bunch to cheer each other up :)

So since my second lap where no endo was found, I've been bounced around different pain management specialists to try to reduce/help the pain. I really got to a stage where I though I was crazy and imagining the pain as I didn't have endo, it turns out that I'm not crazy (yey) :D From what the nurse specialist has explain to me, the nerves in my pelvis have learnt endo pain signal and seem to be firing off pain signals even though the endo is no longer there. While I'm glad that my endo hasn't returned, it's frustrating that the pain is still there and can be triggered by the smallest things like stress, tiredness, certain foods.

Alongside medication, I've been working with a pain management psychologist who has really helped deal with any flare ups though mindfulness techniques and the sessions I've been having are focused around changing how my brain/body responds to pelvic pain signals. The overall goal is to almost re-path the nerve signals in the brain and eventually have no/little pain.

I'm finding the pain management clinic really helpful and would recommend it to anyone else that's struggling!

8 Replies

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  • Great to hear things are improving, can I ask how you came to learn or get referred for he pain management. I'm desperate at the moment to try anything. Thanks in advance.

  • Hey I was referred to it from an endometriosis centre but you should be able to get a referral to a pain clinic from your GP :)

  • Hi im glad this is helping you, I kerp getting told the same has you , its what they call memory pain, but I look 6 months pregnant and am suffering with bladder and bowel trouble, and have cyst on my rigjt ovary, ive already had 5 laps and endo has been found my last 1 was 6 years ago, is it memory pain or doI have endo again! Im really not sure what to think aafter reading your message, but im glad you have found help x

  • I've noticed that I haven't really had much bloating or bowel problems since going onto Gabapentin, have you tried something similar? If it's not your endo that's come back it may be bowel related, as that was the next step for me if it wasn't endo. I hope they find out what's wrong soon! x

  • Hi thanks for reply, ive tried gabapenthin, nepraxen, mirena coil, zoladex, im on cerezette at the moment, there is no wsy the pain im experiencing, is memory pain

  • Hi I do apologise if my message came across the wrong way, I appreciate your advice thank you x I'm so frustrated and pain gets unbearable xx

  • Sorry to hear you are still in pain but happy to hear the pain management clinic is helping. Did you have your endo removed by excision?

  • Hey I had the ends removed by lasering and it hasn't come back, which is good!

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