My story began a while back. I first got my period when I was 9 years old. It was never normal, ever. My mother took me to an OB GYN, who was also a pediatrician, when I was 10 years old to express her concern about how my period would last for 3 months and then do nothing for 3 months. The doctor told her, because of my age, nothing could really be done, but hopefully it would work itself out as I got older.
Well, it didn’t work itself out, and at 16, after several ultrasounds, I was diagnosed with polycystic ovarian syndrome and put on birth control. My doctor was wonderful! She explained to me that later in life, when I wanted to have children, I may need fertility treatment. But at 16, that seems like a million years in the future! I started on my birth control and went about my life.
At 19, I met my husband, and we married in 2003, when I was 21. I was still on the pill and had no thoughts of coming off it anytime soon, as we were so young when we were married. A couple of years after being married, I got new insurance, and they didn’t offer the birth control pill I had taken before and prescribed a different one. It made me feel very nauseous and overall crappy, so I just quit taking it. I was 23/24 at the time, and although I was still young, my marriage felt very stable. So the thought of getting pregnant didn’t bother me. I just thought, hey, let’s see what happens!
Well, nothing happened for years and years. In the time I was off birth control, I experienced months and months of no menstrual cycles at all, which I secretly didn’t mind, although it was very unhealthy. I wouldn’t know HOW unhealthy until later. As time went by and I never got pregnant, I seriously worried I’d never be able to conceive because of my PCOS. Although I knew fertility treatments were an option, I was so scared that nothing would even happen with them. I just told myself that maybe I’d never be a mom and just made myself not ever think about having children.
In early 2009, I awoke one morning with severe abdominal pain. I couldn’t walk straight. I went to a doctor, and since I felt the pain in my stomach, they checked it out, as well as my kidneys, liver, and intestines. Nothing out of the ordinary was found. It never occurred to the doctor or me to check my ovaries though. About a month after that, I started bleeding heavily. It wasn’t painful though, and being young and stupid and having never had regular periods all my life, I never bothered going to an OB GYN to have it checked out. In December of that year though, I fainted at work. Extreme anemia and dehydration were to blame, and the doctor told me the bleeding should be checked out. 2010 came around, and it all stopped, so I pushed it out of my mind. In 2011, I was 29, and with my family having a history of diabetes and high blood pressure, I decided I would loose weight and be healthy. I dropped 40 lbs and felt GREAT. A few months later, I had the most wonderful surprise of all! I was PREGNANT! I was beyond shocked and scared, but I was happy!
While I was pregnant, they discovered what they thought was a dermoid cyst in my right ovary. It was fairly large, about 6 cm, and it explained the pain from a few years prior. They, of course, kept a close eye on it throughout my pregnancy, and I was told I had to take care of it soon after I gave birth. My daughter was born in July of 2012, 7 weeks premature, but healthy and beautiful. It was an amazing time, going from years without ever conceiving to suddenly having a baby. I felt beyond blessed. The cyst had never really been an issue before the pregnancy, except for the one painful experience and occasional, little shooting pains to my belly button. After I gave birth, it went back to not really being an issue, so I slacked and never had it removed.
In the beginning of 2014, my daughter was 1 and a half, and I wondered, could I tempt fate again and try to conceive a second child? I was a bit apprehensive, as she had been premature, so I was told my second pregnancy would be high risk. I was worried if a second child would come even earlier or worse, so early the child could not be saved. And of course, I still had the deep-rooted fear of trying for a child and never becoming pregnant.
As I was pondering all these things in May of 2014, the heavy bleeding began again. But it was even heavier than the bleeding I had experienced in 2009, and this time, I felt scared. Something in me told me this was something more. I’d wake up at 2 or 3 in the morning, rush the bathroom, and just bleed and bleed and bleed. This time, I went to have it checked out, and after several blood tests, a biopsy was done. It was determined I had a polyp in my uterus. They also found my endometrial lining was extremely thick, 5 cm thick, and my uterus was swollen to the size of a 4 months pregnant woman. I was told it was not cancer though, so that eased the majority of my fears. They would go in and remove the polyp and the thick lining, and we would take it from there.
While they were going to remove the polyp and lining, they would also remove my right ovary and Fallopian tube, as the cyst was fairly large. The doctor and I had decided I’d be given a chance to try to conceive again. I was prescribed 40 mg of Megestrol for the bleeding, and it worked. The bleeding stopped. By now it was August 2014, and I, having never had surgery before, was in NO rush to have this surgery done. I pushed it back to January 30th of this year. I had an ultrasound done in October to make sure everything was sort of the same, and I stayed on my medicine and left it at that. In late November, around Thanksgiving, I started spotting, and it slowly progressed to heavier daily bleeding. I contacted my doctor in December, and she said, as long as I wasn’t soaking a pad front to back in 2 hours, then it should be okay.
In January, on the Monday 3 weeks before my surgery, I went to work at 1 pm. Two hours later, I felt a sudden gush of blood. I ran to the bathroom, and the horrible bleeding was back again. But this time, there was horrible pain. Horrible. Worse than giving birth pain. It would shoot down my legs and around my back. It actually felt like severe contractions! I went home early and called an advice nurse at the my doctor’s office. They told me they’d contact my doctor and have her contact me ASAP. That night and for the next 3 nights and 4 days, I had the worst pain I had ever felt in my life. I could not sleep. There was no comfortable position, and the bleeding was back in full force, this time with huge, huge blood clots. They were so horrible and huge, I cried in pain and in fear of what was happening inside body. I saw an OB GYN, on Wednesday. It was not my usual one, as she was on hospital duty, but another at the office. She told me it was my cyst acting up, but with less than 3 weeks until my surgery, I was given pain meds and told to just hold on until January 30th. That day could not come fast enough. Although the bleeding subsided by Friday, I was so sore and bloated. But when the day of the surgery came, I was so relieved, knowing it would now be all over, or so I thought.
I had laparoscopic surgery, and after I woke up, my husband informed me that when my doctor went inside my uterus, there was no polyp to be found, just my very thick endometrial lining. My doctor removed as much as she could but was very careful, as she didn’t want to cause scarring while I was still thinking about possibly having a second child. My right ovary and Fallopian tube were removed, and it turned out that the cyst was not a dermoid cyst, but 3 Brenner tumors. All 3 were benign, but they excreted hormones and steroids. I was sent home the same day and started my recovery. On Feb 17th, I had my post-op appointment. By then, I was more mobile and feeling optimistic that this was all over. I was kept on Megestrol because the doctor wanted me to be healed before we saw how my periods would be. I remember my husband had plans to come in with me that day to the post-op, but my daughter had a slight cold. I didn’t want her around sick people, and I told him it was okay. I’d go in alone, since all that was happening was me getting a letter to go back to work.
Well, it didn’t quite go that way. I remember sitting on the examining bed and thinking how long it was taking the doctor to come in. When she came in, she sat down right in front of me and asked me how I felt. I said I was in some pain but getting better each day. She looked at me and said, “Well, I removed a lot of endometrial lining, and it was sent off to pathology, and they found something disturbing. So it was sent to the Mayo Clinic, and the results came back on Friday [that day was a Tuesday].” She said to me, “It came back as complex hyperplasia with atypia and endometrial pre-cancer cells.”
After that point, she kept talking, but mentally, I wasn’t really there. I remember her talking about “this type of endometrial carcinoma,” and I remember thinking what an ugly word carcinoma was. I remember asking 3 or 4 times, “If it’s pre-cancer, why is it being called cancer?” She explained to me the cells had a 60% chance or higher of becoming full-blown cancer, so it WAS cancer and would be treated as such. She told me it was a small portion of the cells, but they were there, cancer cells. She said there was even a chance she may have removed all the cancerous cells, but I would be referred to an oncologist. I was to have a CT scan and MRI to make sure nothing had spread, and then I’d see the oncologist and talk about my diagnosis and options. I had a sudden moment of clarity and said, “How do I get rid of this cancer?” She told me there were several options when it came to medicine if I wanted to stay fertile. I remember saying to her, “I’m not really very fertile. Never have been.” It was the sad truth, and I needed to stay alive and healthy for my daughter, my miracle baby. I asked, “What about a hysterectomy?” She just looked at me and said, “A hysterectomy would solve all your problems.” And I agreed.
I was in shock. So much ran through my head. I remember asking for a letter to go back to work on February 28th. I remember thinking, “But I had a biopsy, and it was just supposed to be a polyp…” And then I thought, “How will I tell my husband?” His father had died of cancer in 2002. How would I tell my mom? I’m an only child, and my father had passed when I was 7. I’m all the family she has. And I thought of my baby. I was immediately grateful that, at her tender age, she couldn’t know what was going on, that this was a conversation I’d have with her years down the line. Then, the immense fear set in. So if the biopsy missed it back in July, what if it was somewhere else? What if they found something else?
In the next few days, I googled a lot and read all I could about endometrial cancer and how my PCOS was more than likely the culprit. Years and years of my hormone levels being so unstable probably led to the mutation of the endometrial lining, to the complex hyperplasia with atypia, and now, the beginning of the cancer. I also read that 10%-16% of women with Brenner tumors develop endometrial hyperplasia. I read and read until I decided to stop depressing myself. The first week after the news was the worst. I felt such despair. I talked to my husband and told him my gut reaction of wanting a hysterectomy and wanting this horrible, ugly, nasty carcinoma out of me. He agreed and said he wanted me around for a long time. We hugged and cried, as we fully accepted that our miracle baby girl would be our only child. But that was more than we, than I, had ever hoped for. Then came the CT scan and MRI, and my doctor called me within 48 hours to tell me it looked clean and nothing else was found. It seemed to all be in the lining still. Nothing seemed to have spread to my uterus. That news gave me strength.
I saw my oncologist on March 3rd, and she asked me if I wanted more children. I said, with my history of PCOS, the fact that my baby was premature, and then throwing this in the mix, I’d accepted one child was all I’d be blessed with. I wanted a hysterectomy. She explained to me that my left ovary and Fallopian tube looked enlarged on the MRI, and even if I hadn’t had the endometrial cancer diagnosis, she would have suggested I have the other ovary and tube removed in the next year anyway, all due to the effects of my PCOS. I was kept on the Megestrol, and on April 23rd, I had a robotic assisted hysterectomy. Today, I had my first post-op. My wonderful OB GYN had indeed removed all the cancer cells back in January, but the complex hyperplasia with atypia was still there in full force, 3 cm thick. But no cancer cells were found. My lymph nodes were left alone, as there was no need to remove them.
On June 2nd, I will have my last post-op visit with the oncologist, and that will be it! I have my life back! I know so many more brave women go through so much worse than what I did. I really had a silver lining in that my diagnosis was so early. It couldn’t have been caught any earlier than it was. I knew a hysterectomy would take all the nasty cancer cells away for good and that I’d NEVER have to deal with the fear of endometrial cancer ever again. This would also be the end to the 21 years of irregular bleeding that I had experienced.
The struggles of PCOS are so far reaching, the problems with fertility being the worst! I was so glad my struggle with that was also finally over! I have been blessed with wonderful doctors, as I now know from reading about the ladies here that a diagnosis for PCOS can sometimes be so hard to get!
Now, with all this behind me, I can be the best mother, wife, and daughter I can be! I remember in my week of despair finding this site and reading all these stories. I thought, on the day of my post-op, I’m going to come here and share my story! I’m here! And I’m the happiest and feel the healthiest I’ve felt since May of last year! I’ve WON!
The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.
This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.