Tried multiple drugs for endometriosis

This is a typical endometriosis story of trying different drugs and treatments for endometriosis after not being taken seriously by doctors or mis-diagnosed with other health issues

This is Anna’s story …..

My endometriosis story does not have a very happy beginning.. but the ending is in the making... I'm 38 years old. When I was 16, I would collapse from the symptoms of endometriosis. Often, I would get problems throughout my cycle - mainly in the middle, during ovulation.


On several occasions, I went to my doctor and, on one occasion when I passed out on the way to the hospital.


All the doctors I saw thought I had bowel problems (constipation) or just simple 'period pain'? I can't tell you the number of times I was given enemas! It was until I was seen by one of the senior doctors at the hospital that it was suspected I had endometriosis. He referred me to a gynaecologist.


So I turned up for my gyno appointment. I was petrified as I was young and inexperienced. He read the referral, laughed at me and said that there was no way someone so young could have endometriosis.


He sent me away. Twelve months later, after another particularly awful episode, I went back. He did a laparoscopy and discovered that not only did I have endometriosis but I had a very serious case of it (no kidding!).


I was put on Danazol, a hormonal drug, for six months, but apart from making me fat, it did not abate the endometriosis progress. So, at barely 18 years of age, I was booked in to have surgery. I was told that it was to remove the cysts, excess endometriosis material, etc.


It wasn't until three months after the operation when I went back to see the doctor that we even spoke about how the operation could affect my future fertility. He was very condescending and proceeded to tell me that I had an 'ovariectomy' and tried to intimidate me by speaking to me in medical terms.

When I persisted in questioning him, it emerged that he had removed half of one ovary and a third of the other and that I would probably have difficulty conceiving later in life. I honestly felt violated. At no time before the operation had we discussed the removal of ovary tissue - or future fertility.


After that, I went on a merry-go-round of drugs - Prima Lutin, Prima Lutin + Danazol, various Pills. Eventually, I ended up on Diane 35 that helped control my cycle. I never went back to see a gynaecologist - I felt too betrayed. At 35, my husband and I decided that we wanted children.


Three years later, we're still trying. I've been off any medication for close to 6 years and my endometriosis has returned with a vengeance. I now face the choice of either not having any children, or seeing a gyno and getting some help. I don't know what I'm going to do. 

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