Personal experiences of diagnosis


Here are stories from other women describing their experiences of the length of time it took for them to finally get a proper diagnosis of endometriosis ...

By reading of first hand experiences you may gain a better understanding of the obstacles that can stand in your way when trying to find answers to the symptoms you are suffering - and how some of these women have challenged the medical establishment to finally get a correct diagnosis .

These are real stories, and they highlight the real problems that women encounter and are often give the wrong diagnosis or they are ignored, and told that what they are suffering is normal.

By challenging these attitudes and being persistent - (sometimes for many years) women finally get to find out what has been wrong with their health.

Some of the headlines may have been edited, as this may help to find a story similar to yours much quicker.



Share your experience how long it took to get a diagnosis of endometriosis

What did you have to go through before you were diagnosed with endometriosis? How long did your diagnosis take?

Read the experiences of other women

Click below to see contributions from other women ...

Post menopausal endometriosis sufferer 
In late 2012, at age 47.5, I was declared post menopausal based on blood work. In early 2013, an intrauterine polyp had developed (and burst), and I bled …

Diagnosed at 37, 2 surgeries later and considering hysterectomy at 42 
I used to have dainty little periods. 5 days, no cramps or mood swings, and I used the tampons with one drop highlighted on the box, even at night. I …

Two years to get any answers for endometriosis 
Hello my name is Alejandra, I'm 20 years old. Living with Endometriosis is not easy, and it takes a lot to get used to but it is quite possible. The …

Took 5 years for a Diagnosis! 
Hello all, My story: About 7 years ago I started to feel pain in my lower right abdominal area, it was so bad I finally went to the doctor's. This …

Age 32 when I got my diagnosis of endometriosis 
I recently just found out I have Stage 3 endometriosis & now only have 1 working tube. 2 years ago I decided to stop using birth control, then approximately …

Diagnosed with endometriosis at 14 years old 
I haven't seen anyone contribute with this type of history, so I'm hoping to help young women who may have this disease. During my first cycle at 14 …

Diagnosis missed despite severe endometriosis 
Since I can recall I have always had severe pelvic pain. Throughout grade school I couldn't keep up with the other kids. I fatigued easily. I always came …

Endometriosis diagnosis took almost 2 months 
I have had severe pain with endometriosis on and off since October 2011. My first trip to the emergency room, I was discharged with no causes or diagnosis. …

3 years and 4 Doctors later to get my diagnosis.  Not rated yet
I was recently diagnosed with Endo after switching to my 4th Doctor. My first doctor told me I had ovarian cysts. My second Doctor told me that my husband …

Over twenty years with textbook symptoms before someone took me seriously Not rated yet
I started my period young, 10 years old. I had such heavy periods even then, with severe cramping. My mother, who had extremely light periods, complained …

Endometriosis post menopausal Not rated yet
In late 2012, at age 47.5, I was declared post menopausal based on blood work. In early 2013, an intra-uterine polyp had developed (and burst), and I bled …

I had to advocate for myself after 14 years with symptoms of endometriosis Not rated yet
I suffered with Endometriosis for ten years before diagnosis. No one seemed to know what the disease was, what was causing my pain or how to deal with …

Not diagnosed with endometriosis until I fainted and taken to the ER  Not rated yet
I got my first period at 11 and they were pretty painful from day 1. But around the age of 15 it got so bad that I would have to stay home from school …

Diagnosed at 20, should have been diagnosed years ago! Not rated yet
Hi girls, I want to share this story with you, so if you think you might have endometriosis or are going through exactly what I did.. please keep harassing …

Severe endometriosis as young age Not rated yet
I started my period at age 10, and each month would vomit from the pain, have an extremely heavy flow (2 night-time pads and a tampon changed once an hour), …

Distressed by symptoms Not rated yet
I started having a stabbing, aching pain about 7 years ago. It would happen during my cycle and then again about two weeks later. I ended up going to the …

Emotional and physical wreck Not rated yet
My names Heidi and I would like to share my personal endometriosis story. I was 11 when I started my period, I am 25 now and just diagnosed with endometriosis …

Have not been diagnosed yet Not rated yet
I have not been diagnosed with endometriosis and I don't know if anyone can assist me... Or just give me a bit of info. My mum's a type 1 diabetic and …

I was told symptoms were normal Not rated yet
Many symptoms and infertility - a common story After 12 years of Doctors visits for intense pain symptoms and sickness with my periods, along with …

Too many people ignore the signs Not rated yet
Another sufferer not having her symptoms taken seriously ... I started my period at age 13, with no usual problems. I was lucky, I had no cramping, …

3 years self diagnosed Not rated yet
Using support of a Naturopath has helped Marie to keep on top of endometriosis At age 15 when I had my first menstrual period I was in horrific pain. …

11 years, fighting like a girl Not rated yet
In early 2012 I experienced a very bad flare-up of endometriosis. I did not know this at the time, I made numerous trips to the hospital, I was misdiagnosed …

It took 20 plus years for a diagnosis Not rated yet
For years I suffered before I was diagnosed with endometriosis. I had suffered with ovulation pain, infertility, painful sex, bowel troubles during …

Finally been taken seriously Not rated yet
My endometriosis symptoms were dismissed. Since I started my periods at 14 I had very painful periods. Not every time but maybe every 3 months or so …

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My diagnosis - laparoscopy soon Not rated yet
I have been having just awful abdominal pains for the past few years...I have been diagnosed with Poly-cystic ovary syndrome for about 5 years now. …

My diagnosis took 11 years Not rated yet
From the moment I started menstruating, I had debilitating pain. A wide range of doctors (and my family), kept telling me it was 'normal' and to 'put up …

Endometriosis - my invisible pain Not rated yet
In February 2008, I first started experiencing pain in my sides which was later found to be endometriosis. I was 24 years of age and I thought the pain …

Endometriosis - It's all new to me Not rated yet
I'm 24 years old and was just diagnosed with stage 4 Endometriosis. Three weeks ago, I didn't even know Endo existed. Since Tuesday (09/18/12) I'd …

My diagnosis took 3 years Not rated yet
In July 2009 after a visit to Mexico is when the vomiting first began, so of course the first diagnosis was a parasite. However, it was not. From doctor …

Surgery today and endometriosis found Not rated yet
I've had right lower abdominal pain for almost 2 years. Never really had bad periods, so I thought it must be bowel in nature. Initially had a CT scan …

Diagnosed with endometriosis this year Not rated yet
For as long as I can remember I always had pain during my period. It started getting worse around the time I turned 18. But in September 2011 (2 months …

Just diagnosed with endometriosis today.., Not rated yet
I am 31 and I just had my first Laproscopy done today. I have always had a heavy cycle and used to get very sick (vomiting,chills) right before I started. …

Endometrioma, not Cancer Not rated yet
Never thought I had endometriosis, thought it was normal to have painful periods along with diarrhea. First ER visit by ambulance (had severe abdominal …

My diagnosis of endometriosis took 7 years.  Not rated yet
I had painful, heavy, irregular menstrual cycles starting at age 12. So my doctor suggested I get on birth control. I stayed on birth control until 2004. …

Too long for diagnosis of endometriosis Not rated yet
I had a laparoscopy for treatment of endometriosis on 19/04/2012 and am slowly on the mend. I am now 25 years old. I have been having awful periods …

Diagnosised 1 week before my 21st birthday Not rated yet
Ever since I started having periods, pains of cramping have always been severe. I missed school every month, and when it was that time I knew I would be …

Diagnosis took 3 years just had hysterectomy Not rated yet
I had pain building for years, periods getting worse, totally felt horrible when having my periods. My symptoms of endometriosis included heaving bleeding, …

My diagnosis for endometriosis took 9 months. Not rated yet
I never seemed to have problems with periods or unbearable pain associated with them when I was younger, although I did have lower abdominal pain around …

Just got diagnosed with endometriosis after 7 months Not rated yet
Finally got a diagnosis for endometriosis. I started having really bad lower stomach and pelvic pain in November. I could feel a lump on the left side …

27 years for diagnosis of endometriosis Not rated yet
I had to persist and suffer for many years before I was finally diagnosed with endometriosis. My symptoms began at 29 years of age with stomach/abdominal …

Eventually diagnosed with endometriosis Not rated yet
It has taken a long time for me to finally get diagnosed with endometriosis. I was one of the 'lucky ones' if you can even call it that. I ended up …

Doctor knew I had endometriosis never told me! Not rated yet
I had very bad cramps when I first got my period at 12 years old. I would spend my lunch breaks bent over on the floor of the girls bathroom. My periods …

I was diagnosed in 2 months Not rated yet
With absolutely no symptoms which would arouse suspicion of endometriosis, I approached my doctor simply with complaints of feeling bloated, and the presence …

Self diagnosis of endometriosis Not rated yet
After many years of silent suffering and things progressively getting worse, one particularly bad menstruation I really thought I was going to die from …

My diagnosis took 7 years lead to secondary infertility Not rated yet
I experienced very painful periods since I was 13 (started my cycle at 11yrs old). Doctors over the years tried different oral birth control pills to help …

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