Let me start by saying that I have always had very painful periods. Like most other endo sisters, I thought this was normal. I would spend the first couple of days of my period in so much pain, it was insane. I can remember as far back as my freshman year in high school (on a half day of school) watching the clock, just waiting for the minute that I could go home and crawl into bed. There have been days that I have had cramps so terrible, I had to miss school or work.

Now you may feel that this is long, but this is important to me to spread my story. I want other women, whether diagnosed or not, to know that we are not alone. Please continue to read.

Just four months ago, I began to have extremely painful sex. I went to the emergency room a couple of nights later, because the pain would not stop. The E.R. doctor gave me a pelvic exam, tested me for STD’s and yeast infections (and accused my husband and I of not being committed). When all of the tests came back normal, she gave me a prescription to clear up a yeast infection she said probably didn’t show up on the test. I was then discharged.

A week later, I was still having the same symptoms, along with added back pain, pelvic pain, bloating and fatigue. So, I went to an urgent care facility, since my primary doctor was booked. I paid my insurance co-pay, was taken back to an empty room, met the doctor and gave my symptoms. I was not treated at all and I was told to go follow up with my primary doctor or go to the E.R. again. You can only imagine my frustration since I had just paid my insurance co-pay and didn’t get help.

So, I went to my primary doctor (P.D.) two days later, and told them my symptoms. I was unable to see my actual doctor but got in with a P.A. I was scheduled for an ultrasound. The first ultrasound showed that I had an ovarian cyst, so I scheduled an appointment with my gynaecologist. When I arrived for the appointment, my ultrasound results were not faxed to the office and I had to have another ultrasound. This time, nothing was seen on the monitor. So the gyno said that the cysts had most likely ruptured and sent me home. Keep in mind that at this point I am in so much pain that I have been missing work and not getting out of bed. I was told that I would be fine in a few days.

Fast forward to another appointment with my P.D. (my real doctor this time) and she orders a CT, but tells me she thinks I have endometriosis. I had never heard of endo before this point, but she said she was going to run more tests but wanted me to go to my gyno again. I was also referred to a urologist.

At the urologist, I had to come back three times, one of which for a cystoscopy – not fun. By this point, I have been to the E.R. twice, urgent care, and almost 10 office visits. I had been diagnosed with a UTI, yeast infection, ovarian cysts, and kidney stones. All were misdiagnosed. I was not able to work due to the pain and symptoms, and spending countless money on deductibles, co-pays, and useless prescriptions were weighing on my bank account. At the time of the cystoscopy, I was diagnosed with PFD and interstitial cystitis. I still have not had any treatment for either, and have actually been told I may have been misdiagnosed… Again.

Now back to my good ol’ gyno – my husband and I were so frustrated at this point that we went in with my mother-in-law for someone who may be able to mediate and get some answers. We got none – in fact we were told that I didn’t appear to have endo symptoms and needed to see a gastroenterologist before he scheduled my laparoscopy. So I did that, despite being pissed. I had a colonoscopy and endoscopy and appeared fine. So I called my gyno and a laparoscopy was scheduled – three weeks out.

Now, let’s fast forward to November 7, 2012 – the day of my laparoscopy. I go in for the surgery, and when I wake up from the anesthesia my husband is not around (I was told he would be able to come in after the surgery ended). I asked the nurse to get Tyler, and when he comes in, he says good ol’doctor gyno never told him the results of the surgery. The nurse apologised for his behaviour, and said he went to deliver a baby, and that she would page him. All the problems I had with this gyno hit the roof. I had just had surgery and he couldn’t even take the time to speak to my husband!? When he came back, he said that I had endo. He said that it was “removed and the best solution was to get pregnant to slow symptoms down.”

Since Nov 7, 2012 I have only been able to work 3 days and I am still in a great deal of pain. I have recently learned that in the next three months I will have to have two more surgeries.

Thanks for reading my story. I want a voice, and want to create a voice for others suffering with endo.

Thank you for sharing your story Heather. 

If you would like to contact Heather, you can follow her on Twitter @HelloEndoBlog. You can also visit her blog over at Hello, Endo!

Remember, every one of us has a different story, and the more shared, the more we can learn. If you are interested in sharing your story, please contact me at shireen.emlwy@gmail.com.