Endometriosis UK
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Need help

I have been to the doctor this morning with blood in my urine and have just found out ive had endometriosis for 14 years on my medical files and have never been told or treated for it. Ive been in agony with my stomach, hips and back for years and the past couple of months only managed to get an ultra sound that found i had adenomyosis and gallstones but ive been in and out doctors for years asking for help. Im in total shock. Need advice. 8 years ago i found out i had hypothyroidism and 2 months ago found out i have adenomyosis and gallstones. Ive had awful births and nearly lost my first born and last born child. I dont know what to think or who to turn to for advice. Please is there anyone that would know if this is medical negligence?

3 Replies

Only an expert can tell you whether this is negligence. Could you start a NHS complaint procedure? If you seek compensation you need to launch a formal legal complaint within 3 years of you becoming aware of the issue.


Thank you for your reply. I will go through complaints with nhs and will be seeking legal advice now because i just dont understand how they havnt told me for 14 years. Im absolutely shocked. Thank you.


How was it diagnosed 14 years ago - was it a definitive diagnosis? When you pursue a medical negligence claim you have to not only prove negligence but 'causation'. So if not pursuing the 'diagnosis' has caused you permanent harm then you may have a case. But that is the part that can be hard to prove. I had a similar experience. I was finally diagnosed with endo at age 51 some years after having a hysterectomy, ovaries removed and HRT given. I developed aggressive post menopausal endo that grew under the influence of HRT. This variant of endo is documented as caused by HRT. When I examined my records I discovered the hysterectomy/bso were done for PMS, something I never had. I also found a 'diagnosis' of endo in my records many years previously but it was pretty much instantly ruled out in favour of pms, neither of which I knew about. I was put on mid cycle levels of oestrogen after my hysterectomy which should never have happened with endo on my records. I spent months preparing a case and then wrote to all the negligence solicitors I could find including all the high profile ones. But they all said that while I would clearly have a case of negligence they weren't prepared to take it on as they would not be able to prove that the HRT caused the endo to grow. Nothing else caused it! So you will have to prove that you have been damaged in a way that you would not otherwise have been had you been treated 14 years ago.


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