Struggling to get a diagnosis

[EmmaSheri]

Hi! I have been getting symptoms of endometriosis since I was 15 and I am 26. I have been to the GP on several occasions over the past 11 years with symptoms and they brushed it off as painful periods and gave me the pill.

Most recently I changed GP surgery and finally seen a GP that listened to me. My main symptoms are pain all the time and loose and painful bowel movements every day. I have been off work on and off with my symptoms and depression for this. I work for the NHS as a nurse and they are saying if I have anymore time off they may have to find me a different post!

I have had a colonoscopy as they originally thought it may be a bowel disease. However this did not show anything. I then was referred to a Gynaecologist. I was really hopeful that after all this time I would get a diagnosis. However the consultant ignored my symptoms and proceeded to say I need to lose weight. She said she would not be prepared to do a laparoscopy because of my weight. I expressed that I was not happy with this. She then said I will refer you for a second opinion with a consultant 'that is prepared to preform laparoscopy on large ladies'. I am still waiting for this appointment to come through.

I do not know what to do. I am so stressed that work are going to move me and I am getting no answers. Is anyone else in a similar position?

[Brambledoggy]

Hello, please click on my profile and read my experience. I’m now 51 and still having issues. Read this and then go to current guide lines for diagnosis and treatment for endometriosis. Google ESHRE and download the patient PDF file which should help you enormously (or anyone else reading this) Also I believe a phone call to UK endometriosis hotline will be very useful. Nina.

[EmmaSheri in reply to Brambledoggy]

Thank you 🤗

[Lindle]

A diagnostic lap is no longer considered the gold standard and you should be offered a scan first. The treatment pathway is in the full ESHRE guideline. This should hopefully get you past the issues at the moment of them refusing a lap. They do like BMI to be under 30 though for your own safety so if it's over that it would help to try and get down to that sort of level. But I know just how hard it is when you are in pain and fatigued.

eshre.eu/Guidelines-and-Leg...

[Angellouise]

I’m sorry you are going through so much. Keep pushing to get answers . My daughter has been going through the same thing. She is waiting to see an endometriosis specialist since her lap didn’t show anything. She has had pain for years like you putting her on the pill and also Lipton. I wish you luck.

[RZ94]

This is really hard to read and see that you have been failed by the institution you work for Emma. Hopefully things will get better- as others have said download the guideline and be a strong, loud advocate for yourself.

[TogetherWeAreStrong Moderator]

Hi EmmaSheri endometriosis-uk.org/endome..., have a read and see how that sits with you, I have been treated badly in certain work environments too, but I put it down to a lack of their understanding