I have had endo for about 8 years now had it removed twice along with polyps on womb, for over a year now I’ve had the bleeding back after sex inbetween periods, feeling like I’m on a constant period with overwhelming pain it’s took a year to finally get an ultrasound scan, I had it Tuesday rings up doctors and the receptionist says all normal.my pain has never been so bad and my bowel is affected now with pain on opening my bowel, awaiting a doctor now to speak too, during the scan the person performing it says she isn’t specialised to detect endo.
My question is has this happened to anyone else we’re scan has come back normal? And what the next step is?
Thank you
Karen
Written by
kagz
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Hi, sorry to hear how frustrating this is for you. I can only share my experience in case it helps. I recently had an mri scan which showed no endo (but widespread adeno) I was surprised. A few months later I’ve just had a total hysterectomy and the results from histology showed widespread endo, adeno and fibroids. I was told that an mri can only show deep infiltrating endo. Mine turned out to be stage one hence why it didn’t show but that doesn’t mean it wasn’t causing pain. Where I’ve always though my heavy bleeding due to adeno I know find that I also had fibroids which could be the cause. Please don’t give up. Push for a second opinion/further tests. Good luck x
Thank you for sharing I think it’s the wait as well for getting tests done and as I waited a year just for a scan I’ve had 2 laparoscopy removing endo and polyps but I’m not even under a gynaecologist now and I’m the same if I had the money I would go private too.
I’m sick of being sent for scans both MRI and ultrasound and them coming back as normal, I’ve already had a laparoscopic procedure proving I’ve got endometriosis estimated at stage two…however I’m still regularly suffering I’m under the care of a gynaecologist however they just keep prescribing the progesterone only pill and the GP proscribes painkillers when I know what I need is a hysterectomy. It’s very frustrating if I had the money I’d go private sick of being fobbed off with hormone pills.
Hiya. So sorry you’re going through so much. Have you asked your GP to refer you to an endo specialist? I demanded that mine do it… I know you probably feel too rough to cause a fuss, but your health is a priority and I think that because GPs see so many people everyday, they lose sight of the fact that it is important!
Several people recommended to me in the past that I go to A&E to get some help. I never had to take that route, but I have heard that it does help move things along.
I have a phone consultation in 2 weeks so I will request I see a gynaecologist, the A& E is horrendous waiting times 6-7 hours it’s bad!My relationship is hard but I don’t feel he fully understands endometriosis I have fibromyalgia too so the pain is horrendous expecially the monthly times, but I will push because you know when something isn’t right don’t you.
I recently had a diagnosis of fibromyalgia! So much of it is linked… that will make things even more of a struggle, I’m sure. But you can do it ☺️ and this app is just amazing for support and info.
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Frustration ,confusion and more confusion 
Frustration with doctors..how to get them to refer you to get a lap.
angry and frustrated 
Frustration with Gynaecologist
No endo found - feel so frustrated 
