Endometriosis UK
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Getting a Diagnosis?

Hi everyone, just found this forum and I'm looking for some encouragement/advice. I have a family history of endometriosis and a set of 'classic' symptoms (irregular periods even on the pill, very heavy flow with clots, extreme cramps and fatigue, horrific back pain, pain in and difficulty moving legs, irritable bowel symptoms etc.) so I feel that I am in the right place here.

I have been seeing doctors about this for 7 years now and it has been a soul destroying experience. When I haven't been completely dismissed, I am told that my symptoms are unrelated or it is suggested that I just 'take some ibuprofen'. I am currently on the combined pill as I found the mini-pill had a hugely negative impact on my mental health. I don't feel like this is working for me; I am bleeding heavily for around 2 weeks each month and my symptoms are very difficult to manage. I am currently at university so I feel that I need to do something before I start full time work and live alone.

Does anyone have any advice on how to get a diagnosis? I feel like it would be confirmation that I am not just being "hysterical as well as reassuring me that there isn't something else causing my symptoms.

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Hi,

I am so sorry to hear you are going through this :( it can be a nightmare trying to get diagnosed. Have they done any tests to try and rule other things out? Ultrasound, MRI etc? I eventually got diagnosed after I got fed up and changed doctors to someone who understood and got the ball rolling. Where abouts in the country do you live? Do you know anyone who could recommend a good doctor?

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Thank you! I've had a couple of ultrasounds and blood tests which were all clear and no one has followed up on the results with any other suggestions. My current GP is in Newcastle and I've been recommended a doctor there by a nurse friend to ask for when I make my next appointment.

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Yes I would definitely try a different doctor. I found that some of them were just so stuck in their ways and fobbed me off so many times with 'period pain'. It wasn't until I found my current doctor who pushed me straight through for tests (I hadn't even been offered an ultrasound previously) that things started to move forward. Sorry I can't be anymore help though :(

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Exactly it's so frustrating! I'm glad you've got a good doctor now just wish there were more out there who are willing to do that. No that's great thank you! It's always helpful to hear from people who have been through something similar. I know there's never going to be a magic fix but it always helps to have a bit of encouragement :)

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Well I hope you get sorted soon! You are always welcome to drop me a message if you ever need anything. I have been through all sorts in recent years!

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Thank you!!

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Hi Nell, I'm in Newcastle too and after years of being back and forwards to hospital I finally requested a referral to the BSGE endometriosis specialists at the RVI. The consultants name is Tony Chalhoub. Lovely man. Just had my 1st laparoscopy two weeks ago after 12 years of being referred to different gynaecologists. Removed endo and separated my ovary and bowel which has fused together. I would absolutely recommend getting a referral to him.

Good luck x

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That's great thank you so much!! I

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Could you afford to pay to have a scan privately? I paid £100 for a scan with Ultrasound direct and although that didn't conclusively diagnose my endo it showed enough areas for concern for my GP to refer me to the hospital under the 2 week urgent referral system. xxx

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Thanks but I definitely can't- I'm a student at the moment. Definitely will be something worth thinking about saving for in a few years if I've got no further.

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It's so frustrating not being listened to isn't it. Your symptoms sound horrible I'm so sorry no one is taking you seriously. In the end I changed doctors twice to end up seeing someone lovely and understanding. Hope this helps

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Thank you! It's so lovely just to hear from people who understand :)

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You poor girl. Please know that you are not alone.

Seeing a gynaecologist is very important to getting a proper diagnosis and testing. I suffered for years with multiple surgeries but had an amazing OBGYN who was very supportive.

Ultra sounds seldom show much...., I have had many and very few revealed the emmense problems caused by the endometriosis, adhesions and blood filled cysts. Many times my uterus and bladder were pulled down and stuck to my bowl.

Your bleeding is a concern as are all your symptoms. Please get in to a specialist or go to emergency the next time you have pain and bleeding....... At least you will see a Gynaecologist sooner.

Sending you Blessings 💕

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Thank you!!

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