I spent the last week wondering if I should write about this. Do you want to read about my uterus? Am I going way over the limit of TMI with this? But the biggest question won: How many of you are going through this and want to talk about it or know more? Since finally figuring out was causing the issues that I thought were just part of growing older (they sort of are but were not “normal”) I have tentatively and then more openly started talking about it. What I discovered, was that many of my friends were going through something similar and were craving hearing about others experiences as much as I was. Be warned that this may be way more than anyone wants to read, but knowing how much it helped me to read these stories, I’m doing it anyway.
A few years ago, I started experiencing what I assumed was part of reaching my mid 30’s, excruciating pain and bleeding with my period. I couldn’t leave the house for fear that I would profusely bleed through all the barriers I had in place and ruin someone’s furniture. I was getting really good at quickly cleaning mine, but would be mortified if this overflow happened not at home. At one point, I was at the finale night of Austin Fashion Week where my jewelry was on the runway and things didn’t feel right. I went to the ladies room and realized I had flooded through all precautionary barriers and my legs were covered in blood. It was bad and I was in a overly used bathroom with only cheap toilet paper to clean myself up quickly before I had to get back out there. I thanked the stars that I was wearing a dark, longer dress so the blood was not visible, that I had been standing when it happened, that it didn’t ruin my shoes and that the lights were dim out there. Besides the excessive bleeding like that horror story, I was also experiencing cramps that were getting pretty bad, and worse each month. I had passed out and vomited from the pain more than once. I started canceling plans when I had my period with greater frequency and losing days to pain. I would occasionally joke to friends about how much it sucked getting older and having heavier, really gnarly periods and was rarely agreed with, I started to realize that this may not be as normal as I thought it was. Thankfully I kept bringing it up because last December a friend of mine finally asked me what my doctor said about it. I replied that my doctor waved it off as being normal. She gave me the number of a different doctor and suggested I go asap. So I did. And yeah. Not normal. After we spoke and I had an exam, the doctor decided to perform an ultrasound. He confirmed what was suspected: I had a boggy uterus that was 5x the size it should be and all the other signs of adenomyosis. The unfortunate part was that it cannot actually be diagnosed unless the uterus is removed ad biopsied. But as I was experiencing it down to the letter, and started getting symptoms at the age when most women do, there was little doubt to what was going on.
Adenomyosis is basically endometriosis of the uterus. It occurs when endometrial tissue, which normally lines the uterus, exists within and grows into the muscular wall of the uterus. The good news is that it is contained within the uterus itself and therefore curable if the uterus is removed. The bad news is that if you don’t opt for the cure (which he was awesome to say it was absolutely up to me when and if I ever wanted to go that route), it will get worse every month until menopause. We discussed the options and as it sometimes responds well to estrogen therapy, I scheduled to have an IUD put in and crossed my fingers. I went home and thought a lot about everything I just heard. I also decided that as I had been eating my feelings with candy over the last month. I had gained a lot of weight and wondered if it would help the symptoms to be a more healthy size. So now you know what spurred the obsession I had with getting back in shape and loosing 45 lbs. In February I had lost most of the weight and had the Skyla IUD inserted. I hoped that this combo would make all the issues go away. The pain lessened, which was great, but I started bleeding everyday. At first it was heavy and still clotted but it slowly got a bit lighter. I spoke to my doctor about the constant bleeding at the checkup and he said we could remove it right then or give it 6 months. as that is how long many women experience irregular bleeding with an IUD. I continued to read everything I could find online in forums and in articles and decided to give it 8 months, as that seemed a magic number for many women in my situation to stop bleeding everyday. So I waited. At 7 months the pain came back. I was still bleeding every day and now I was back to experiencing constant cramping and backache. I started to find lots of horror stories online about the terrible experiences that other women had had with their Mirena IUDs and feared that I was heading the same way. I would take advil when it got so back I could do nothing but lay in the fetal position but it didn’t do much to stop it. The bleeding was not only still daily, but now I was noticing that it was getting heavier as the day wore on, especially in the evenings after I worked out (another symptom!). The morning last week when I woke up in a pool of blood with it pouring down my legs (with a tampon in) causing me to start crying out of fear that I was dying and scaring Adam with how much blood was in the bed and the trail I made as I ran to the bathroom was the last straw. I called the doctor and went in for a checkup last Friday. He examined me and said the IUD was not working how we had hoped. At this point, it was bad enough that I had two choices: I could nothing and live with it getting worse every month, most likely having to go on pain medication to be able to function or have the hysterectomy.
I have at this point read enough since December that I know that a hysterectomy, leaving my ovaries so I do not enter early menopause is not as scary as I first thought. I’ve spoken with women who have had similar situations and were so, so happy to have been done with it. Their advice was across the board: DO IT! Their only regret was not doing it sooner. So I am. Tomorrow morning. I’ve never had major surgery or had to spend the night in the hospital, so I am a bit freaked out but its the number one surgery in the US so I’m not too worried. The operation will be a robotic laparoscopy so I will not have an incision to heal from, only the organ removal (oh just that, lol). They want me up and moving slowly the next day, and the doctor said I should be back to work on Monday and driving Tuesday. In two or three weeks I can walk for exercise but am restricted from lifting anything over 10lbs for 6 weeks. In 6 weeks I should be good to go.
So this is my journey with adenomyosis. If you are dealing with something similar and have been suggested to have a hysterectomy and want to talk about it, please reach out, you’re not alone and I’d love to hear from you!
Women suffer a lot with their uteruses, unfortunately we aren’t able to just shut it off, sometimes the treatment of uterine fibroids or treatment of PCOS, etc. takes a while and can be up and down. However, persistence is key and important for fighting these worrying diagnose. Going through something on this level just shows how much testing and experimentation is needed.