Endometriosis UK
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My doctor won't listen...

Hi, I've just turned 28, and I'm suffering with symptoms that I believe could be diagnosed as Endometriosis. I've been to my doctor with separate symptoms for years but never got anywhere. March 2014 I began experiencing unbearable pain during intercourse so went to my doctor and was sent for a scan / gyno appointment, the result was -"everything is fine". Sept 2015, I'm still struggling with pain during intercourse (partner of 3yrs), terrible bloating, bad bowel movements, awful period pain etc. I went to the doctors last week where I'm told my scan from 2014 showed I had a cyst in my left ovary. I don't know what to do, the pain has only got worse since that scan, I don't know why I wasn't told about the cyst. I have a blood test to see if I have celiacs today then another gyno appointment but I feel like I'm being fobbed off. I don't know who to talk to, I don't know why the doctor seems to be so reluctant to help me. Any advice on who to speak to / next step to take? Thanks x

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Endo pain is always fobbed off as "normal" by doctors who can't be bothered sending you for the correct tests. I waited 7 years of going back and forth to my gp and a&e before I was finally diagnosed last year. It's really important to just keep pestering the doctors and tell them that you know this pain isn't normal and that you want answers or you will lodge a complaint against them. It is neglecting to ignore patients symptoms! They may not have told you about the cyst if it was small as they usually don't cause any trouble but if you believe you have endo raise this with your GP. The only way to diagnose is through a laparoscopy which, even though it's keyhole, is still quite major surgery which is why they prefer to leave it until they believe there is a good chance of finding endo.

Hope you get the help you need!

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Thank-you! I will keep at it and hopefully get somewhere soon!

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I started going the doctors 12 months ago with symptoms of endo , although I did not know this at the time , visiting doctors monthly , in month 4 was sent to gyne had ultra sound and told all is good and was removed of the list , month 5 back to docs as still in pain .... every month I went I was treated for one of 2 things either a urine infection or constipation , I have had enough laxatives to last me a life time ....... after doing research myself and realising all my symptoms stack up to endo I went back to the doctors and yet again was to be treated for constipation ..I refused the treatment and advised the doctor I have not been constipated for 12 months and never hav issues going to the toilet , I advised him I have all the symptoms of endo ad wish to be treated for it .After reading some book he agreed , I am now being treated for it and on the waiting list for a lap.......... My advice is to go into the doctors and tell them what you think and what you want , it is only you that knows your body afterall :) x

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I totally agree, it seems that if the doctors have to do the research you will get nowhere but if you take it all to them then they'll do something. It's annoying! Glad you're getting somewhere, thanks for the reply!

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my suggestion to you is to persist with your doctor they found cyst on my ovaryou and said all was fine. I persisted as the pain got worse and worse and made sure I was referred. endometriosis can not be diagnosed by scans

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keep banging on at them tell them you can not put up with this and it effecting your life it does work xx

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Hi, so sorry your gp has let you down. Ask to see another gp if they continue to be unhelpful. Number 1 I would start tracking your symptoms - have an A4 page for each cycle, starting with the first day of your period, number the days in the margin. I do this and then highlight certain symptoms in different colours i.e. bleeding, pain etc, that way you can start to see a pattern and have plenty of information to present to a gynaecologist. Say to your gp that you aren't happy with the outcome of the previous referral and that you want to see an endometriosis specialist with a view to organising a diagnostic laparoscopy due to the painful sex etc. Endometriosis can't be diagnosed via a scan.

I've been through this and was originally told I was a young healthy girl who was 'just the wrong end of the bell shaped curve' in terms of period pain. . . when they opened me up I had stage 4 endo!

Keep fighting for that referral and useful to carry on with the gastro tests too as you can have concurrent issues.

All the best x

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Hi this is so familiar to my own story, like yourself I constantly attended my GP with the exact same symptoms for 21 years and was told that it was normal for women when they had their periods. It was only when i was referred to a fertility consultant and he done an internal scan that i was diagnosed (within seconds I might add) with endo when I went back to my GP and said to him his words were "it all makes sense now" keep pushing your GP and if ur not satisfied complain. By the time I had all the tests and the laparoscopy done my endo was stage 4 with "kissing ovaries" but this wouldn't have been as bad had I got treatment when I first presented with symptoms. I don't blame my doctor an awful lot because there's not enough training or awareness on endo. But please don't suffer unnecessarily keep pushing! Good luck xo

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I know this isn't the best solution but if no one will take you seriously - go to a&e. I went there on numerous occasionas (due to being close to passing out from the pain) and explained the symptoms I was having, also got the nurse to check my cervix to make sure that everything was normal. She took me seriously and booked me in to have my lap

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Im having the exact same problem I just posted a rant lol

Apparently I cant have PCOS and Endo...

Apparently because I dont Ovulate I cant have it and the pain only happens during then!

oh and "I have IBS"

Doctors really need to do more blood research on this condition they dont have a clue xx

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