Missed diagnosis

[Snowboarding]

I have all the symptoms for endo but had a lap in January and was told I didn’t have it, still got loads of problems and doctors have referred me back to another endo specialist. Has only had a lap and been told they don’t have it but turns out you do?

[weekari]

Yes, I had a lap 2 and a half years ago and was told I didn't have endo. They said all they found was 2 fibroids, which were asymptomatic as they were on the outside of my uterus. I bought the whole 'ibs and stress' diagnosis. But then my back became increasingly more painful and I eventually saw an orthopaedics consultant in March. I had an mri through orthopaedics, they thought I had arthritis but no, it confirmed endo & I got referred back to the gynae who did the surgery(not an endo specialist). He denies missing anything and insists it wasn't there 2 years ago. I'm definitely not convinced by this (I've requested my medical notes as I feel I'm not being told the whole story). Also, the large fibroid they found 2 years ago is also definitely symptomatic, it's 13cm big and sits in my pouch of Douglas and has a 7cm bleeding leison inside it, with endo. They've called it 'chaotic' and 'bizarre'. It presses into my rectum and spine and causes me a whole world of pain.

Just because they can't find anything, doesn't mean there isn't anything there. There will be a reason for your difficulties. They just haven't found it.

My advice is, don't give up and trust your instincts. Really tune into your body and try listen to it. I was so out of touch with mine, I just believed everything the doctors told me about my body and my symptoms, even though my instincts were telling me otherwise. I would also advise you to do your research. A lot of doctors really don't understand endo and women are so often not listened to when it comes to pain, especially if it's to do with our reproductive organs.

Ironically, now I have been diagnosed, I'm now rejecting the medical treatments offered and have opted to try a natural treatment plan.

Good luck with it and just don't give up. X

[Snowboarding in reply to weekari]

I’ve been fighting for an answer since I was 13, now I’m 21. My periods are all over the place, I’m having a terrible one now. Had a period for 9 days, stopped for a week and back on again, on the 8th day and no sign of it stopping. I go through pads every couple of hours, I can’t use tampons because they hurt, sex can hurt and I have been known to cry because of it, i also do sometimes bleed straight after. I’ve missed days off school at work, the pain in unreal but I get a sharp pain on my left side, my hips, my lower back, my thighs and sometimes down to my legs, I’ve fainted and thrown up in pain. I’ve cried with embarrassment because I’ve not only leaked through my pad, it’s become visible for everyone else to see. I’ve tried implants, pills, no contraception, even tried having the coil fitted but I screamed with pain. My first gyneo wasn’t a endo specialist and said there was nothing wrong with me and it was in my head, he also told me I was a girl and girls have periods and have to deal with it. He made me feel like I was making it up, maybe I was being a drama queen, maybe this pain that I think is awful is normal and everyone feels it. When I had my lap in jan and was told I didn’t have it I cried, not because I want the condition, but because I need answers and I need to be believed because right now I’m doubting myself and I’m getting no help from my GP. I have also been told that it doesn’t happen to ‘kids’ my age. I’m just so drained and fed up and just need Ann answer

[weekari in reply to Snowboarding]

Omg how could they imply that what you're experiencing is normal or acceptable? I'm so sorry this has been your experience. It's awful. I just hope this specialist will fully listen to you.

I am just finishing an amazing book called 'ask me about my uterus' by abby Norman. Your story sounds so similar to what she's experienced with endo and trying to navigate the medical system. I think it might be empowering for you to read it. Xx