Hi. My name is Jessica and I am 24 years old.
I have always had painful and heavy periods. I started my menstrual cycle when I was 11. When I was 18, I started on birth control pills. They helped with my heavy periods and I no longer had any pain. After struggling for 6 years on the pill (and being on numerous brands and all different hormone levels), I opted to go the hormone-free route. I cannot tolerate artificial hormones at any level (just like my aunts). I was having periods every week, spotting in between, menstrual cycles that were short and then long. I could never pinpoint where I was at in my cycle or when my period was coming. My body had a mind of its own and it was miserable.
I decided in February of this year to get the Paragard IUD since it is the only hormone free birth control method. It has worked wonders. I was having perfect cycles. 28 days long, 5 day periods that were moderate, not heavy and not light. I could pinpoint to the day when my period was arriving. It was fabulous.
At the beginning of May, I started to have severe pain in my right side, right about where my ovary is located. I thought maybe I had strained something or maybe my Paragard had shifted, so I was going to give it a week. If the pain was still there in a week, I would call my gyno’s office. A week later, the pain was still there. I called and they offered to have an ultrasound done to check the placement of my IUD. When my results came back, they said everything was perfectly in place, but that a 2.6 mm complex cyst was discovered on my right ovary. They say they come and go through the menstrual cycle, but to me this seemed abnormal. I had never had pain from one before, but maybe that was because I was on the pill. They wanted me to do “watchful waiting” and come back into the office in 6-8 weeks for another ultrasound to see if the cyst had grown, shrunk, or disappeared. A week later, I couldn’t bear the pain. I could not wait the 6-8 weeks until my next appointment. I called and they insisted I waited until the next week and call back (I was just about to start my period and they wanted me to wait and see if it went away with it). I was doubled over my entire period and it felt like someone was sticking a hot iron into my left ovary. I couldn’t wait for it to be done. I gave them a call and they had another ultrasound scheduled for me for the following week. When my results came back from that, they said my right cyst had disappeared, but a 2.1 mm complex cyst was growing on my left ovary. I had an appointment scheduled to see my gyno about the results.
When I went in, we went over everything: my right cyst, painful periods, left cyst, right cyst disappearing, yet I was still having pain on my right side. He said it sounded like endometriosis. Both of my aunts have it and I was sending up so many red flags and showing symptoms of the disease. He wanted to schedule a laparoscopy. I had already prepared myself for this diagnosis.
Last Friday I went in for my surgery. I was told that I had my appendix and adhesions removed (one was actually connecting my colon and bladder together). He said he took a biopsy while in there and was waiting on the pathology report. I went in yesterday for my follow-up and he told me that the biopsy from my adhesions came back negative for endometriosis. I was baffled. I thought for sure this is what was going on. I asked how the adhesions and scar tissue got there and was told it may have been from endo trying to start, but was somehow halted. He wasn’t sure. He also briefly mentioned that it could be from fibroids, but I had never heard of fibroids throwing off adhesions. I thought maybe it was something that started right before I went on the pill and maybe somehow flared up again when going off of the pill and switching to the Paragard since it’s hormone free? I didn’t really get a straight answer.
I am frustrated. Frustrated beyond belief. I just want an answer. I have been in pain every day for the past 3 months, went through surgery, and still have no idea what is wrong or where these adhesions came from (this was my first surgery, so I know they aren’t from a previous one). I have talked to a friend of mine and one of my aunts about what they think. Both of them have seen specialists who were able to work wonders and help them with their endo. I’m not saying I want this disease by any means. I just feel like I got a misdiagnosis. My aunt brought up the fact that endo can grow deep in the tissue of your uterus and can go undetected if not truly searched for. I also found an article about deep endometriosis and how laparoscopic surgeries do not pick up on it. I went into surgery on the last day of my period and I have no idea if that affected anything. I also know that endo can grow in all different forms and can easily be looked over. My next step is to hopefully get in contact with a specialist.
I just wanted to reach out and see if anyone else has had this happen: You have all the signs of endo, have your surgery, and the doctor and pathology report say there is no endometriosis. I am open to any thoughts, opinions, and experiences. Anything will help at this point.