This is a classic story of being mis-diagnosed with other health issues rather than investigating for endometriosis. This led to a delay in treatment which resulted in Lisa having a total hysterectomy after discovering severe endometriosis
This is Lisa’s story …
I'm 32 years old and was recently diagnosed with endometriosis in March. I had been ill for three years, the same symptoms pelvic and back pain. I went to my regular physician who had me go to every doctor ending in ologist. Nobody could help and even when I went to my OBGYN he would say I was overweight, needed to exercise, needed to buy a better bra. The fact was I had never weighed over 145 and I now was 215.
I did exercise, I worked in a nursing home and was on my feet all day, I'm very active and have two girls 10 and 14. I was getting sicker, I would throw up, sometimes not eat at all because my stomach always hurt, but every doctor said you can't be not putting food in and gaining weight. I ate less now than ever but continued gaining. Then I began with discharge from my breasts, they sent me to a doctor and nothing, all in my head, it could be the hot showers stimulating it or sex.
I was only concerned because my grandma has breast cancer but nothing turned up. Everyone around me was beginning to think she’s crazy, they all have periods just get over it, if doctors couldn't find it, nothing is wrong so I quit going to the doctor.
But in April I found out I was pregnant and in July I miscarried. I then began with a horrible cold I couldn't get rid of and in Oct I still had this cold so I went back to the doctor nothing. Again, I was feeling worse, my back pain was keeping me from getting out of bed and my periods were keeping me from work, family everyday life.
I had fever, night sweats, vomiting. But nobody knew why. I was beginning to think I was crazy, we even thought it's our house, maybe mould, nope. Maybe I overdo it, so I started doing less, maybe it's our mattress, bought a new one, new bras, diets, exercise, yoga, nothing worked. I maintained 215 this entire time never losing or gaining.
Then I went back to the doctor. I couldn't get out of bed my back symptoms were so severe, he said I should see this gastro doctor, I'd seen him before like all the others he believed it was female related and I was sure he still would, but he said we need to do a colonoscopy and endoscope. That was on a Monday, everything looked good with my colon, great but he wanted to send on stuff to the OBGYN.
I get the call that we need to come in and we do I'm being told I have to have surgery now to go in for possible staging of ovarian cancer, What??? This is on a Thursday, and I'm being told this by the same person who I've gone to for 11 years, delivered my child, but when I've come in for three years with the same complaint, I was told exercise, better bra, tilted uterus, no big deal it's all normal.
That following Monday they did a partial hysterectomy (RIGHT OVARY AND TUBE). I thankfully didn't have cancer, it was Endometriosis.
It was so severe he had to scrap it off other organs. I had a chocolate cyst the size of a grapefruit on my right ovary, he had to call another doctor in to assist because it had embedded itself and he could not remove it alone. He wanted to remove everything but my spouse didn't allow it.
I will say when I awoke I was thankful no cancer but I was more thankful that right away NO Back Pain. All this time I was made to feel crazy and I had this little voice inside that kept telling me, no something’s wrong, but eventually I started to believe it. Now I'm just trying to deal with all of it one day at a time.