Hospital Admission

[tamzx]

So i've been in hospital since tuesday, has anyone else had problems with getting people to believe them? My symptoms are the worst they've been and im convinced no one actually believes me

[Lily1986]

Yes I have stage 4 which took over 13 years for being ignored and fobbed off to be diagnosed by which time it was too late and left me infertile and in pain every day and recently unable to work.Even now with a diagnosis i received 6-7 years ago I struggle to be believed by medical professionals. It’s disgraceful.

Last hospital admission I was just left for days being treated like I was nuisance and wasting their time.

Now I tend to suffer at home in unimaginable pain and my poor parents are left to deal with me as I refuse to be treated like that any more by doctors.

So sorry for what you’re going through, best wishes to you and message me anytime xxx

[tamzx in reply to Lily1986]

Honestly i get you so much, the pain has been so bad that i've been so dizzy i'm unable to walk unaided, i just feel like they think its in my head which i can safely say for myself and many others it isnt, its so frustrating, i live in student accomodation and none of my flatmates understand either!

Thank you so much, you can message me whenever too xx

[Bethleah in reply to tamzx]

Hi it took over 20 years for me to be diagnosed and i get dizzy and cant walk unaided. It took a lot to get listened to then believed it wasn’t all in my head. Even family thought it was a mental health issue. Finally i saw consultant at a bgse and they confirmed all my symptoms are due to endo. I also went through a dizziness clinic and they said they believed it was related to the endo and hormonal imbalance. I made sure i got it all confirmed in writing and put in my medical notes.

[tamzx in reply to Bethleah]

Hiya, oh wow i didnt know this! I just keep getting told it is in my head, the collapsing usually happens during a bad pain flare and then the dizziness is after that. Im glad to know i'm not the only one and im glad it finally got confirmed for you!

[Bethleah in reply to tamzx]

It took perseverance and an understanding consultant but also me insisting repeatedly there was a link with my cycle. Have you seen a gynaecologist?

[tamzx in reply to Bethleah]

Yeah and this time they told me it wasn't gynae related, i just broke down and they said they'll see me in clinic in January

[Bethleah in reply to tamzx]

Was it a general gynaecologist? Have you been diagnosed with endo?

[tamzx in reply to Bethleah]

This first time yes, the second was an endo specialist and they've said suspected but they're convinced because i have all of the symptoms but they wont do surgery until i've lost 7 stone which would leave me at 6 stone...

[Bethleah in reply to tamzx]

Was it an Endo specialist at a bgse centre or a gynaecologist who is interested in endo?

[tamzx in reply to Bethleah]

It was just in general hospital

[Bethleah in reply to tamzx]

Check out NICE guidelines and consider asking gp for a referral to a bgse. But some are not taking referrals due to COVID. The bgse know what they are talking about. I knew I needed bgse as they gave been seeing Endo issues for years so I knew there was a better chance of them having come across my symptoms before which they had. What part of country are you in?

[tamzx in reply to Bethleah]

I will do thank you! I’m in the North of England

[Noodle31]

I'm so sorry to hear this, I have had similar experiences. I struggled from the age of about 12, and was only diagnosed at 31 after the discovery of two large cysts (so large my anatomy on ultrasound was described as 'distorted' - not very nice to hear!). I've now had one operation to drain the cysts and am planning to freeze eggs and proceed with a second op. Before that, I had a couple of hospital admissions in the middle of the pandemic as my surgery was cancelled (deemed 'non urgent' suddenly). I'm convinced the whole thing has left me a tiny bit traumatized. I don't know what to say to make you feel better, other than to assure you that you're not alone.

[tamzx in reply to Noodle31]

Thank you so much, i’m just convinced everyone thinks i’m pretending and i’m definitley not

[ourmolly]

I have had issues all of my life. My periods were always heavy with clots. After having my 2nd child at: 22 I had huge issues. I started with rectal bleeding, with clots. After having many colonoscopies they still did not know the problem. My GP said I had endometriosis. At: 27 my problem was unbearable with pain . Hence, it was so bad they could not let me pass another period. So at: 28 they did a hysterectomy, but my Surgeon would not remove my ovaries because I was too young. But I still had my rectal bleeding, which I still have at: 65. About 5 years ago a London bowel hospital said that the lining was very thin and that they dare not operate as I could bleed to death. Also, I had a rectal ulcer. In your situation I would suggest that you keep telling your GP and Consultant about your problem. Do not give up. regards, Della xx