Endometriosis UK
33,984 members30,423 posts

10 years on and sam eold story!

It really sickens me how little the medical profession (esp UK GPs) know about this disease! Before I was diagnosed I was subjected to years of being told I had UTIs and kidney infections and questioned numerous times about how I wipe myself after I go to the toilet like I was some kind of animal and didnt have good personal hygiene and then after I pushed and pushed I finally got to see a Gynae who diagnosed me with PID and it was only when I finally moved to Dubai and got private medical cover through my work that I was finally diagnosed and still 10 years on it seem the same thing is still happenig! I say this because my sister told me last night that she is startign to expereience the same type of pains I had before being diagnosed and was in the doctors crying her eyes out trying to convince them that she is not making up the pain that she is in and they refused to do anything about it!

Make me sooo angry!

4 Replies

I had exactley the same experiences when i was diagonozed even though my mother and grandmother had this,i even had a a&e doctor take my husband aside once and say to him are u sure she hasn,t slept with anyone else it probably is an STI.It is absolutly disgusting how women like us are treated.


This is disgusting!

In the world of advanced medical research etc and a large percentage of GPs and Gynaecologists are still sticking to the myths.

What we need is a worldwide research made by endometriosis sufferers as to tell GPs what they should be looking for, and when not to assume its something else.

There should be a standard list of symptoms to use as an advance warning/alert system saying these symptoms suggest 'this patient has endometriosis'.

I would quite happily make one if it wasn't for the fact I suffer with not only a lot of pain 24/7 because of two pain inducing health issues, but the drugs I take also effect my concentration

Endometriosis should no longer be assessed as a PID or as an STD/I as it is a classification of its own.


I feel sorry for your sister - The last 6 months I have spent all my time trying to make someone listen. I went to A&E 4 times, once in an ambulance after collapsing on the underground and was sent away everytime. I changed GP surgeries twice... one GP told me there was nothing he could do, another said 'well you've been referred already so I don't understand what you are expecting me to do'. I spent 4 months in the "care" of the urologists, who decided they weren't convinced it was a urological problem and so didn't deem it urgent.... despite me pleading, calling everyday, my mum calling everyday, writing etc. Finally I had a cystoscopy - the level of care was shocking, they tried to discharge me whilst I was almost vomiting from the anesthetic. They then referred me to the gynos... who told me (eventually after the referral was done 3 weeks on) that I'd have to wait 2 months for a consultation and another 3 or 4 for the lap. I was pretty much bed ridden by this point and so in the end a friend's father lent me £3k (which is going to take me a long time to repay) in order to go private.... care was obviously better but it's 10 days on and I'm still in pain... the surgeon told my mum she removed endometriosis, a cyst and some scar tissue from a pelvic infection I wasn't aware of but have yet to have my post op appointment where I'm hoping she'll provide further help and advice. But now i'm just anxious and worried by still feeling in pain because i'm worried that it hasn't fixed it and that I will never get my life back. Went to see a GP today at my mum's surgery, just looking for some reassurance - and shockingly I got none. I feel like I have a UTI now as well but the doctor said she couldn't be sure as there has been blood in my urine for months, so she bunged me some anti biotics. Now just feeling freaked and stressed after 6 months of pain and being fobbed off and made to feel like i'm making a big deal out of nothing. Just found that 95% of medical professionals I've seen couldn't care less.... the other 5% I paid to care.


I have had endo for 14 years (im only 28!) I have had years of several appointments, scans; ultrasound, ct & mri, blood tests, urine tests, several different consultants, being poked, prodded. Luckily I was diagnosed early on in my 14 years but even after 2 operations both finding extensive endo & blocked tubes, cysts etc my latest consultant (only 2 years ago) was still sat for 30 minutes trying to convince me I had IBS and that I needed to change my diet.

Just bear in mind, I dont smoke, dont do drugs, dont drink alcohol, eat fresh fruit & veg everyday, walk my dogs twice a day & walk to & from work every day! IT INFURIATES ME! when she did back down & operate & found endo again for the 3rd time I felt like barging into the theatre once I had woken up shouting i told you so!!


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