Advice for my appointment tomorrow pleasešŸ˜˜ - Endometriosis UK

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Advice for my appointment tomorrow pleasešŸ˜˜

Emma5397 profile image
Emma5397
ā€¢8 Replies

Quick background story:

Started period at 10, when I was 11/12 my periods started making me ill, trying to be sick but nothing coming out, sometimes actually being sick, and in so much pain i wouldn't be able to move . This would happen for the first 2/3 days when it was at its heaviest.

Since 11, I would get really bad stomach pains and back pains for a week or so, every month. When I'd go to my crap gp (you'll find out why he's crap in a second) he'd get me to do a pee test and tell me to start antibiotics as he thought I'd had bladder and kidney infections, this would happen 4/5 sometimes 6 times a year... up until last year around February time.

I started to refuse to see him as all he was doing was giving me pills but not find a reason why it was happening so much. So last year around March time I start to see another gp, she was lovely at first, really listened to me and wanted to help me. She looked though my medical history, and found out Iv never had an infection, all my pee tests came back clear, so I didn't need them antibiotics (crap gp)

I started to see this new gp (dr z) she sent me for every blood test you can think of, sent me to a gut specialist, and had 2 ultra sound scans..everything can back fine. So I got sent to see the gynaecologist.. I saw her for the first time in July ish last year. All she could talk about was my weight (I'm under weight atm due to pain and feeling sick) and said to me and my mum that it doesn't sound like endometriosis and it could be down to me being underweight but she'll do it laparoscopy just to check...I had my laparoscopy on 14th December 2016, I was diagnosed with endometriosis and had a coil fitted.

I was pain free for three weeks! But then all started to come back. I was her in February (this year) for the after op thing..

I got told that the amount of endo I had (she found three patches) wouldn't cause that much pain that I was in, and said she 100% got rid of it all... she then started talking about eating disorders...had to have emergency tests (ECG and blood tests) witch still to this day I haven't got the results as they got lost. I got made to go down the eating disorder path witch put a pause on the endometriosis path. I got sent to spring flied hospital and spoke to a eating disorder specialist, I was 100% honest about everything, eating, my family, my social life, just everything. And they said it's clearly not an eating disorder and surprised they haven't put it down the the endo...but they put my case to a meeting board, witch a number of specialist all said that same that I haven't got an eating disorder.

I went back to dr z, witch she then put me down saying they could of got it wrong. I was sent to a dietitian, witch after 4 appointments I got signed off with the dietitian as I'm getting on track and slowly putting on weight, amazing what happens witch abit of encouraging and positive support.

So after all the stress and everything I'm seeing the same gynaecologist tomorrow

I want to know why she told me, the amount of endo I had wouldn't cause that much pain as Iv since found out that's incorrect and you could have endo everywhere and no feel anything or can feel absolutely crap or have the tiniest about and feel nothing or crap..just depends on the person and where the endo is place. So I want to know why she's telling me that and maybe other girls.

Does anyone have any advice for me or can suggest anything to say to her tomorrow?

Sorry for the long message

Thanks

Emmaā¤ļø xox

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8 Replies
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Linda_clln profile image
Linda_clln

Iā€™m sorry I donā€™t have any advise, I just wanted to wish you got luck for tomorrow.

Iā€™m in the same boat next week with my crap consultant that wonā€™t admit I have endo even after all treatment has failed!

I read on here listen to you body as you are the one that knows when something isnā€™t right!

Keep fighting and good luck xx

Emma5397 profile image
Emma5397ā€¢ in reply toLinda_clln

Thank you so much! Good luck to you too! Keep fighting! Your absolutely right, you know your body better than anyone! Xx

I had the tiniest bit of endo and had an enormous amount of pain. Iā€™m sorry youā€™ve had to deal with inadequate doctors. Iā€™ve been going through similar situations but with a new problem now so I sympathize with how youā€™re feeling.

And the Linda_clln is right! You know your body best.

I was recently accused of being suicidal and seeking pain medication and that was the main focus of a previous hospital stay, and as soon as I was discharged I went to a different one and the next day I had emergency gallbladder surgery. So I can sympathize with that type of situation with them accusing you of having an ED.

Iā€™m glad youā€™ve been able to put on weight! It should help for your general health.

And honestly, itā€™s nearly impossible to get an inadequate doctor to listen sometimes. My advice is if your appointment does not go well maybe try to find a new doctor.. Iā€™ve been through many. It isnā€™t easy. But donā€™t give up!

I hope things turn out well for you x

Emma5397 profile image
Emma5397ā€¢ in reply to

Omg, what is wrong with doctor? How can they even accuse you of that? That must of been horrible to listen to and on though. And yeah I'm glad I'm putting on weight, more shopping lol, yeah thank you! I hope you get better as well! X

ā€¢ in reply toEmma5397

It was difficult. She was just stereotyping me. But I had my whole family to back me up. It was really rough though. And yay shopping lol šŸ˜

tinkerbell971 profile image
tinkerbell971

I only had a small patch of endo under my left ovary and my pain was horrendous, it stopped for 4 weeks after my lap and now it is back again. Itā€™s not as bad as it was but it still can be bad. Hope your appointment goes well x

Emma5397 profile image
Emma5397ā€¢ in reply totinkerbell971

Did they call it the ovain fossa? That's where I had mine and I think it's under the ovary but not sure lol x

tinkerbell971 profile image
tinkerbell971ā€¢ in reply toEmma5397

No they didnā€™t tell me what it was called they just said behind my ovary haha. They didnā€™t really tell me much to be honest x

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