Before I begin telling my story, I wanted to say that this is going to be a continuing story. For as long as I continue my battle with this disease that so few know about and understand, I will keep writing about it.
I always remember having extreme pain when I had my periods. I was put on painkillers and the birth control pill and told it was normal for women to have pain during that time of the month. It was normal for me to get so weak from the amount of blood I lost and to be in so much pain I missed 2 days of school every month?! I trusted the doctors and accepted their diagnosis. That was in 1993. Since then I have been on 5 different painkillers and several different types of birth control pills.
On August 14, 2000, I was finally diagnosed, via laproscopy, with endometriosis. My mom had read an article in a Reader’s Digest about it and it gave a list of all the symptoms – I had nearly every single one so at my request my family doctor refereed me to an ob/gyn. When I saw the doctor for the follow up appointment, he told me that he couldn’t remove all of the endometriosis. In other words, he wasn’t skilled enough. He said that I had 2 options open to me – Lupron or Danazol and that I was to have my children before I was 30. When I asked him about the possible side effects, he said I’d only suffer from hot flashes. I didn’t trust him on that since I knew every drug had side effects so I spoke to my pharmacist and got a lot of information from her on both treatments.
I decided to try Lupron. My first shot was my last. I had more than just hot flashes. I had hot flashes, nausea, dizziness, anxiety, lactation, and insomnia. I’d cry at the drop of a hat. I was forgetful – I was going out of my mind. My family doctor took me off the treatment as well as told me to stop seeing the ob/gyn. She showed me a letter from him and it said that he told me that I could take Lupron, Danazol, or the birth control pill. Too bad I was already taking BCP and he had never mentioned it to me.
My family doctor then referred me to ob/gyn #2. I saw him for the first time in December. By this time I was searching the net for everything I could find on endo.
The ob/gyn told me that if the pain got worse he’d send me for a laproscopy at Women’s College. He put me on a new painkiller – Toradol, 4 times a day (10 mg each time). He wouldn’t answer any of my questions – just gave general answers.
I saw him a second time in January because I was in significantly more pain and the painkillers would only last for 3 hours, if I was lucky. He took me off the Toradol and put me back on Anaprox (550 mg, twice a day). I’d been on anaprox for over a year already and they no longer eased the pain. When I asked him about doing a laproscopy he said no point. He said I could have Lupron, Danazol, stay on the BCP and painkillers or have a hysterectomy. Talk about choices! When I asked about a hyst, he turned around and said that he wouldn’t recommend it at my age.
I had read in a book that a woman with endo has a greater chance of miscarriages and harder pregnancies and that it was also harder for them to conceive. When I asked what my chances of having children were, he said that endo made some women infertile but didn’t harm others. Once again only general answers were given. I left the appointment feeling frustrated, angry, upset and that I hadn’t received the help that I deserved.
Continued in Part 2.