How did you get diagnosed and how long di... - Endometriosis UK

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How did you get diagnosed and how long did it take?

Bethplowman94
Bethplowman94

I've had numerous doctors appointments, a gynaecologist appointment and ongoing symptoms for a number of years. Doctors have suggested endometriosis to me on more than one occasion but I don't seem to be getting any further than that. Most recently the gynaecologist suggested a mirena coil and I'm not sure how I feel about that.

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My gynaecologist was great and suspected endo so booked me in for a lap straight away where it was confirmed. It did take me 3 months of pestering my gp that something wasn’t right before being referred to a gynaecologist though x

I was fed up of leaving it to my gp, giving me more pointless tests and telling me everything was ok. In the end i just was very direct and said im 99% sure i have endo and i want a laparoscopy as soon as possible. Took about a year from then to get my gynae app then my op which was cancelled the first time. They did it and there it was, on my ligaments and pouch of douglas which is behind the ovaries. It has also made my tubes slow as its been left for so long. Dont let them put you off the longer its left the worse it is x

It took me about 2 years to get diagnosed as I was 17 when I first went doctors, they rarely believed me and just kept giving me contraception to try. Eventually I had a laparoscopy last July which I was diagnosed with endo.

Surgery does tend to be last resort after everything else has failed. You have to be your own advocate and tell your doctor to refer you to a gynaecologist who knows about endo xx

Hi,

I started visiting my gp at 16 and was told that all my signs were normal and basically made out to feel dramatic and that I was wasting time, I fell pregnant at 26 and went for my scan and that was the start of my diagnosis, so had waited 10 years for them to agree that something wasn’t right now am 35 and had enough of all this pain.

Keep being persistent and don’t let your gp brush it under carpet ask for a gynaecologist consultation don’t accept what the gp is saying like I did

Xx

Hello Beth,

It sounds like you are going through a long process. If they have mentioned endometriosis already then I can't understand why you wouldn't be have a laparoscopy just to confirm it!

It may help having a read of my blog - jadesendojourney.wordpress.com

I've written an in-depth post of how I actually got diagnosed, which might be helpful to you. I also had the mirena coil inserted, but only agreed to it whilst put under anaesthetic. It is meant to help endo, but can understand you worries. So far it is working for me ok.

Remember, the only sure way to get diagnosed is through a laparoscopy, so if you feel like that is the only option then push for it.

Hope you get some answers soon! x

I have been in pain since my first period and was diagnosed in 2017, so about 16/17 years or so? I used to be told that my pain was normal, that it was because I hadn't had a kid yet...that it might be endo and off you go etc.,...then they found a cyst and it grew in 2017. A bloodtest was done and it came back positive. It was a cancer test they told me, so I was referred to an oncologist. Luckily I did my own research and realised it was an inflammation marker test which kept me sane at that point...seriously GP...thanks. *sigh* MRI, tests and Lap followed and I was finally officially diagnosed.

I say pester and get a referral to a gynae. If you want a lap to make sure then ask for another opinion. ^_^

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