Endometriosis UK
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Struggling to get a diagnosis

Hello all,

I'm just back from my second appt with gynae and crying angry tears!! I have all the symptoms pointing to endo (have had for 14 years now) and am convinced that's the problem. The pain is now constant and so bad I've not been able to go to work for 5 months. My periods are so heavy and painful I can't stand up properly for days, and I can't walk for more than about 20-30mins on a "good" day. However my gynae has been completely dismissive today (again) and has said it must be a problem with my bowels and nothing gynae related. This to me is just impossible. I'm going back to my GP next week but has anyone else had similar problems with misdiagnosis? I don't know how to approach this with my GP to move forward in getting a proper diagnosis. Any advice would be much appreciated!

TIA xo

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have you asked to be referred to a BSGE centre?

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Didn't know there was such a thing! Just had a look and there doesn't appear to be a centre near me- currently living in Scottish Highlands. Although, due to move back to England next summer so if I'm still no further by then I'll try and get a referral.

EDIT: just found that there is one in Aberdeen! Will ask for a referral next week. Thank you for the suggestion!

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I am so sorry your voice is not being heard, I fully understand how frustrated you must be.

when you see your GP demand a second opinion, Endo does not show up on any scans so the only way to be diagnosed is to have a laparoscopy. This is done via key hole surgery and they will remove any endo if it is present.

After my last laparoscopy my consultant was not available and i was seen by a locum who totally dismissed the fact i was still in pain and told me it must be IBS I have suffered with endo for 15 years now and I knew it wasn't IBS. I demanded to see my consultant so a new appointment was made. At that appointment I was told I have 2 fibroid tumours in my uterus so clearly not IBS

You are entitled to a second opinion and I would demand one

hope you get some resolution soon x

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I was hoping a laparoscopy would be the next step- my GP has previously said all my symptoms point to endo so I'm hoping for more support from that side. Gynae today also suggested pain could be caused by my joints...! Don't need to be a doctor to figure out that joint problems don't equal horrendous periods.

Thank you for your lovely response, I will definitely be pushing for a second opinion. Awful how these doctors can make you feel.

Being a woman is pants sometimes!!! X

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Hi all,

I suffered during 20years and everybody (docters, non-university hospitals, hodpitals with no own endo department, gynaecologists) said the disease was in my head (ex. having heavy cramps, throwing up, being sick without any reason). Probably because the endometriosis disease is a quite an unknown one. If you think you have endo, insist your local doctor for ct scan or X ray. If you have endo, look for specialised endo hospitals or university hospitals threating endo... they do exist.

I had in 2017 lots of examinations before my operation, nice help/application in the week before/after operation + good assistance even after operation end 2017+2018. I am now a very happy endo-free-living person and for info (I was a endometrosis, grade 4, left ovary removed).

Goed luck.

Heidi.

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I can totally relate to this!I know it’s really crap but please please please keep fighting! Don’t take no for answer until somebody listens. I had the same problem in getting diagnosed. I was told all kinds... a trapped nerve, IBS, periods are just painful sometimes. And now after five years of this I’ve just been diagnosed with endo via laparoscopy (this is the only way! All of my scans were clear) If I could give anyone any advice it would be to see a specialist from the start and don’t take no for answer! Whether it is or it isn’t endo, believe yourself and your body. We all have the right to be listened to and checked out!

Maybe research your local consultants and find out who has a specialism in endo. Perhaps then you could ask your gp to directly refer?

Hope it goes well x

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