They don’t believe me!

[Vicki_mc]

Hi all! I’m writing for advice really. I had a hysterectomy almost two years ago for adenomyosis and had a laparoscopy 3 years ago for endometriosis. My pain is as bad as it was back then, actually I think it’s worse! My consultant doesn’t think I have endo back and he said he will do another laparoscopy but doesn’t think he will find anything??

My bladder is getting worse and I keep having small accidents. I saw a specialist and he said my bowel is full and have my some laxatives. I have also got to have some tests done to see what my bladder is like and why I keep having this problem. He said it could be because my bowel is so full it is disrupting my bladder.

Everywhere I go to or talk to, they all think I don’t have endo even though the pain is the same and i have left my job due to the fact I’m in bed 90% off my life and find I get exhausted so easily. Please help with any advice and if you think it sounds like endo or I’m simply going crazy! Thank you!!

[helen979]

You’re not going crazy hunny, if you have the same pain then chances are it is your

Endometriosis. My endometriosis is on my pouch of Douglas, uterosacral ligaments and on my abdominal wall so even though you have had a hysterectomy, if it is affecting other organs in your abdomen then it doesn’t mean all of the disease would be taken away with your reproductive organs. When my endo flares up it definitely affects my bowel giving me IBS type symptoms and I know it’s not unheard of to have bladder symptoms. I was treated for pelvic inflammatory disease 4 times, told I had pulled myself and told I may have appendicitis before being diagnosed with endometriosis so It frustrates me when doctors say ‘I don’t think it’s this’ without even looking. I was a nurse at the hospital i was being treated at and had lots of time off work before diagnosis and it still took me 9 months to convince them to do a lap and actually see what was going on. Persevere and stand your ground, you know your body xx

[Vicki_mc in reply to helen979]

Thank you so much! I have endometriosis basically everywhere u do! Also on my bladder which I can’t understand why they can’t connect the bladder issues with it! It’s just so frustrating! I would love someone to say yes we can do this and I believe ur pain is real! But I doubt that will ever be the case. You are just made to feel like a pain and nuisance for keep moaning! Thank you again for replying x

[dasprior in reply to Vicki_mc]

Don’t give up your fight. You are not going crazy. Join Nancy’s Nook on Facebook- incredible source of upto date information and links of doctors who know what they are doing. Hope you can find the right doctor. It comes as such a relief when someone believes you. A hysterectomy is NOT a cure. Good luck. You are not going crazy.

[Vicki_mc in reply to dasprior]

Thank you for replying! Unfortunately I’m not on Facebook! 😢 it’s just so hard cos I keep getting pushed in different directions and be told different things! It makes u feel like I’m making it all up! X