Note: If you don’t care for reading about periods, uteri, blood, feminine hygiene and the like, I suggest you skip this very long post.
Today I’m struggling. It’s taking all I have to not just up and leave work today. I’ve done everything that I know how and asked every question to my gynecologist I could possibly come up with. Yet here I am, at the mercy of my dysfunctional uterus.
I’ve been having bleeding issues for years, brought on by uterine fibroids. I had an emergency surgery back in, I don’t know, 2008 maybe, to remove a fibroid that was the size of a butternut squash and weighed 5 pounds. I was up to date on all my appointments. None of my healthcare providers at the time noticed this 5 pound gourd in my abdomen until I presented at the urgent care clinic in extreme pain and fatigue. Skipped ultrasound and went right to CT Scan that showed a large growth near my ovary. That lead to an immediate admission to hospital, a 3AM MRI and scheduled for surgery the next day.
The MRI ruled out ovarian involvement and, hence, ovarian cancre, much to my mother’s relief. Diagnosis was a pendunculated fibroid tumor (90+% of the time, non-cancerous) growing on the outside of my uterus, that had twisted on itself, cutting off its blood supply, causing me pain and anemia.
So that was removed and I had a good few years symptom free. Until I started having abnormal bleeding episodes.
I had a new gynecologist at this point, who suggested I start medical control of symptoms and, if I was happy with that being controlled, we could do that indefinitely. Basically I was prescribed the “mini pill” which is a low dose, progestin only, continuous birth control. This worked well for a few years as well.
Until last year. It seemed that any time I did any rigorous exercise, or twisting as involved in yoga, I’d start bleeding. I was in the height of training for my first half marathon and it was miserable. I almost had to back out because I was bleeding continuously and neither I, nor my coach thought it was a good idea to add further stress of a 1/2 marathon on my body. But thanks to my gynecologist, we increased my dose of progestin and that helped, but only temporarily.
Further testing showed I had 2 more fibroids which my doctor believed was contributing to my abnormal bleeding. Several endometrial biopsies showed no sign of cancer or endometriosis. In March, I was faced with a decision – to have another myomectomy (fibroid removal surgery) or have a hysterectomy. My gynecologist said I had a good chance of having another 5 or 6 years of of relief with the myomectomy and a Mirena IUD to stop my period all together. This would bring me that much closer to menopause. I decided to give it one last try.
I had surgery on March 15, 2016 and had the Mirena placed at the same time. Unfortunately, ever since that day, I have been bleeding, and I had the Mirena removed in June to go back on progestin. While the progestin lessened the bleeding, occasionally, it never really stopped. And in August, I ended up in the emergency room hemmorhaging so badly that I was admitted overnight. My gynecologist happened to be in the hospital that day for scheduled surgery and she came down, personally to the emergency department, when the emergency doc paged for a consult. She told me that he had asked her in private, “how long can she (me) go on like this?” That’s how bad it was. I was leaving trails and puddles wherever they brought me. It was embarrassing and devastating. Nevermind scary. We had now moved from inconvenience to interference with my job (I had to take 2 days off for this episode). CT Scan in the ER showed MORE fibroids. More fibroids have grown 5 months. I told her right then and there, fighting back tears, “I’m so done with this. I can’t live like this.” She agreed and said that if I was ready, a hysterectomy was an absolutely acceptable choice in this situation. I decided to move forward to have it done.
But before I can have this surgery, she wants me to have a 3 month course of Lupron, which is a hormone suppressor, particularly estrogen. I have learned that this is standard practice to help shrink the fibroids, uterus, and stop bleeding to build up red blood cells lost due to anemia. I had the 3 month shot on October 3rd.
Which brings me to today. I’m still bleeding going into the second month. I was instructed to take the progestin for the first month and I stopped it this week. And now I feel like crap. Maybe it’s a real period. But I know 2 days ago I was down to very light flow or just spotting, and now I’m cramping, and having to go to the bathroom every hour to change my pad and tampon. Yes, I’m needing to use both.
I’m spending a fortune on feminine hygiene products (just think, every hour – two hours tops). I’m wrecking underwear, pajamas, pants. I’m hesitant buying new clothes because of this. Not to mention just feeling flat out GROSS. I’m fatigued, feeling run down and, honestly, I think I’m starting to feel depressed. I can’t bring myself to do anything active because I have a negative correlation with excessive bleeding. Swimming is scary, cycling is impossible with a pad and a tampon, and running brings me too far away from a bathroom. I’d love even leisure walk 5 miles through Winnikenni, but I’m terrified of having an accident.
I have plans to go dancing tomorrow night. I want to go have fun. I know there’s light at the end of this tunnel, but the “now” is what I’m struggling with. I have 65 days left of uncertainty. Wondering if it will be a good or bad day. Wondering if today will finally be the day the bleeding stops or if I’ll end up back in the hospital. Of if I’ll cough or sneeze and leave a mark on my office chair.
I just want to feel normal again.