OFF TOPIC: My Anemia, Hysterectomy, and Umbilical Hernia Repair Story–1 year later
I know this post has nothing to do with daytripping but this website is the only one I own and I wanted to get my story out there for those that might be researching these topics and need some encouragement and information. I hope I can be of help! I am a 41 year old woman with 4 living children ranging from 7-16! For a few years or so I began to have more irregular periods whereas for most of my menstrual life they were extremely regular, always 28 days like clockwork! Now it would be anywhere from 25 days to 35 days. Some months bleeding was pretty heavy, very annoying for my active lifestyle especially as I am an avid runner. I would mention it to my GYN and they would always tell me if it became too bothersome there were options to explore. Since it was only happening every 3 or so months, I decided not to worry about it. Then came November 2019. I began to spot the very first day of the month and this continued for 8 days upon which I began to have a “normal” period that started dragging on way past the normal length of time, 12 days to be exact! I finally stopped bleeding just in time to take a trip to Florida with my family, thankfully. In retrospect, I see it as God’s grace in my life. Shortly after we came back it was Thanksgiving and I ran in a Turkey Trot 5K and was pleased to place 1st in my new age bracket as a 40 year old, running a “high school” time! Later that day I began to spot again. I only had 7 days off of bleeding so I began to get frustrated. After 4 days of light bleeding, I began to bleed more heavily. 3 days later, the bleeding became significantly heavier. I called my GYN and explained the situation. My doctor advised me to go and get blood work to check my hemoglobin level to make sure I wasn’t losing too much. I went and it came back as a 12.2, not too bad she said, the low end of normal. I called the next day to tell them I was bleeding crazy heavy. I was soaking an ultra tampon and pad in less than 2 hours, and it was non-stop like this. The nurse told me I could use 2 tampons at a time and to call back on Monday if it hadn’t improved since my blood work looked good. That weekend it continued unabated. I would describe it as gushing blood and huge clots. I would use 2 ultra tampons and a large pad and would have to change in less than an hour! Night time was annoying and got to the point where I was asking my neighbor to borrow a diaper for protection. Sunday I spent the day at my son’s volleyball tournament and I was starting to feel terrible, lightheaded, tired, and faint. Monday morning I called to report that not only did the situation not improve, but had worsened. The nurse still didn’t seem very concerned and told me the earliest she could get me into the schedule to be seen was Tuesday evening! So I patiently waited and continued the same non-stop gushing up to my appointment. My regular GYN was on vacation now and I saw a new doctor. She acted quite flippant about my condition and chalked it up to age and the fact that I’d had multiple pregnancies. She did prescribe medication (norethepridine) to stop the bleeding. I happened to have my yearly appointment scheduled for 10 days later on December 20 so she recommended I wait until then to speak with my regular doctor to decide on options such as birth control pills, and IUD, or ablation. I tried to explain how awful I felt, like I was going to pass out but she pretty much ignored me. When I asked about blood work, she looked at her chart and said there was no need since I had “just” had it done 5 days ago. By the time I left the office, the pharmacies were closed so I had to wait until the next morning to start my medication. Within hours of taking the medication, my bleeding subsided and finally came to a stop. That was great except now I had a new problem…I began to have a massive migraine headache. I’ve never been one to have menstrual headaches but I wondered if it was the sudden onslaught of high levels of progesterone flooding my system. The next morning I called the doctor again and told the nurse what was going on asking if they could prescribe something for the headaches. She said she wasn’t sure if it was the medication and I could stop taking it but I would most likely start bleeding again. I asked if I could take Excedrin or something over the counter and she said that would be fine. By this time I got the feeling they really didn’t know what to do with me and that I was on my own to figure this out. The next 9 days were the longest of my life. I had to call off work the one day (I work part-time) but other than that I toughed it out. I felt absolutely terrible, worse than I ever had in my life (except for labor and maybe the flu). I was on the Excedrin continuously which fortunately helped tremendously with the headaches. However the dose would wear off around 3 in the morning and I’d awaken with a head-splitting, crushing headache that I’d have to pack my head in ice and take Excedrin until it would subside and I could fall back asleep. I felt weak, tired, very lightheaded, nauseous, and just plain frustrated and desperate. The funny thing was I suspected the bad feelings and headaches could be due to anemia but the substitute doctor had been so sure I was fine that I doubted myself. I kept losing feeling in my arms. Since it was the middle of December I tried to take my girls Christmas shopping at the mall and I remember they seemed like they were walking very fast and I could not walk with them. Every step was painful and difficult and it felt like all the noise and people around me were swirling around me and closing in on me. I felt like crying and sitting down in the middle of the floor. I told the girls we had to leave immediately. I remember driving home in the dark and having trouble focusing on the road, honestly I felt drunk. I don’t remember if it was that night but the lowest point came when I awoken at night and realized I couldn’t feel my arms and legs (like when they fall asleep, and you shake them to get the feeling back in). I had this overwhelming thought that if I laid back down to sleep I was going to sink into the bed, not be able to move, and would die. I describe it as a psychotic experience as I knew that seemed irrational but I was terrified and forced myself to stay awake even though I was so exhausted. Finally I relented and lay back down and kept waking myself up because I felt like I would die otherwise. I remember just praying and praying. Eventually sleep took over and I woke up the next morning with my limbs feeling better. A few days later, the morning of my long-awaited doctor appointment finally arrived on December 20. I felt a little bit better so I had the silly thought that maybe I had been feeling bad because I had stopped exercising, after all, that’s what normally made me feel happy and healthy, right? Hah! Unbelievably, I attempted a 2 mile run. I can officially say that was the worst run of my entire life! Less than one month ago I’d run a competitive 5K and now I couldn’t jog slowly for more than 100 meters before being forced to walk for a little. I couldn’t figure out why my legs were burning and literally felt like they were on fire, the pain was incredible. I thought, how could I have gotten that out of shape in 2 weeks? (I would later learn that what I experienced is called ischemia, basically a heart attack of my legs!) Somehow I mustered through the 2 miles, doing this slow run/walk. The whole 10 days I had been on the medication I had no bleeding which is why I didn’t think I was anemic. At my appointment I explained to the nurse how absolutely awful I felt. I saw my regular doctor and we discussed a long-term option which at this point I had assumed I couldn’t be on a pill if I got headaches like that so I told her I wanted to have an ablation. She agreed it would be a great option for me as my ultrasound did not show any fibroids or other abnormalities. She started looking at dates right after Christmas (about a week away at that point.) I understood why since Christmas was coming but my heart sank as I wondered how I could ever wait that long feeling like I did. I didn’t want to start bleeding again but I also couldn’t take the daily migraines anymore. She said she would check my hemoglobin again and then if it wasn’t good they would talk about moving it up. That relieved me somewhat. I went straight to the lab and then the pharmacy and drove home. Right as I got home, a nurse at the doctor’s office called. She sounded panicked and asked if I was standing up and if I had drove myself home from the lab! I said yes, and she proceeded to tell me that my hemoglobin level was 6.7 (normal is between 12 and 16!!) She was shocked I could function. She told me I had to “get my butt down to the hospital ASAP!” I needed a blood transfusion and I would be there overnight. I would have the ablation surgery the next morning. I actually wasn’t too shocked but more relieved that the doctors and nurses were finally taking me seriously and that my misery was coming to an end. My hemoglobin when first checked had been at a 12.2, after which I had 5 days of insane bleeding, and then the 10 days on the medication with no bleeding but all the headaches and bad feelings. I believe that my hemoglobin was lower at one point perhaps in the 5’s as I had begun to feel a little bit better. Possibly my lowest point was the night I awoken feeling like I was going to die. I now wonder if I actually was close to death. My mom is a nurse and explained that when you are that anemic, your blood funnels to your main organs leaving your limbs and even your head low on blood. That would explain the loss of feeling in my arms and legs, and the massive headaches. If you were to lose that much blood suddenly say in a car accident, you would be passed out cold, but since it happened gradually to me, my body adapted to it, allowing me to still be conscious.
I went to the hospital and received 2 units of blood (which brought my hemoglobin up to 7.7 before leaving the hospital). I was a little surprised they didn’t give me more as anything under 8 is when you need a transfusion, but I guess they figured it was close enough. I had a D & C and then the ablation. Both procedures are super quick so I wasn’t under anesthesia for long which helped me recover quickly. I had a light lunch and then I was discharged just a few hours after surgery. Recovery from the ablation was easy and pretty quick—1 week. I was crampy and sore for a couple of days, but then felt fine, from the procedure at least. I was still quite anemic and it was towards the end of January before I was ready to start running again. Eventually I got confirmation that my blood work was in the low range of normal again. I was curious to see what my new menstrual cycles would be. I was told to wait 3 months to see the new normal. I never made it that far before I started to spot again. On February ??? I began to bleed heavily again. It quickly turned into the gushing from before. Of course this time my GYN took it very seriously and prescribed Megace to stop the bleeding. This worked very well but it increases your appetite and was not a drug she wanted me on for the long term. When I went to the office for a consultation, she broke the news that I would need a hysterectomy and that I most likely had adenomyosis and the ablation wouldn’t be effective for that. I figured this would be the only option but I pleaded with her to allow me to wait until after tax season (April 15) as my husband is a very busy CPA and I wouldn’t have help with the kids until then. She agreed to allow me to wait and prescribed birth control pills in the interim to control the bleeding. In the past I had never felt great on the pill but figured I could put up with any side effects until the surgery which was scheduled for April 23.
For the first 2 weeks the pill worked wonderfully and I was happy to build up my mileage again even signing up for a trail half marathon in early April. However the spotting started again and I begged my GYN to let me skip the placebo “period” pills and start a new pack which she readily agreed. However a few days in the next pack I began to bleed heavily again, and then waited and watched carefully. Late that Friday evening the gushing started again and I put an emergency call in and another doctor told me to start taking the Megace again immediately. A real miracle drug, I stopped bleeding within hours. I called again on Monday to let my regular GYN know what was going on and she wanted to see me in her office again the next day. By this time the COVID-19 crisis had begun and everything was shut down. By kids were home from school and I obviously wasn’t working as a part-time teacher’s aide. My husband was working from home and suddenly I didn’t have to be shuttling kids everywhere. My doctor asked me what I wanted to do and I asked about moving the surgery up. She said she absolutely would recommend that and considered me enough of an emergency to push it through as all elective surgeries were cancelled. That was a Tuesday and she asked about that Thursday morning at 6 AM, almost a month before I was planning! Now as a little side note, I had also planned to have a simultaneous procedure done by another surgeon. For years I had an umbilical hernia that had begun to act up more recently and figured since I was meeting my deductible and having to take yet another furlough from running, it would be a good time to have it repaired. So my GYN put a call in to that surgeon and came back with the great news that he was available to do it! I went home and rushed around doing last minute physical projects I had wanted to get done and whatever I didn’t get to, the kids could help with.
Bright and early Tuesday morning I reported to the Women’s and Babies Hospital and was admitted. I was under anesthesia for about 2 hours and first had a laparoscopic umbilical hernia mesh repair and then a vaginal hysterectomy. I woke up to seven cuts on my belly, packing in my vagina, and a catheter. I was pretty drugged up at first but I noticed I really couldn’t move side to side or sit up at all. The next morning after they removed the packing and catheter I had to get up to use the bathroom from all those fluids. I had hardly eaten anything yet. I had 2 nurses assisting me and it was painful to sit up at which point I noticed I was extremely nauseous and promptly vomited (into a bag as they were ready) but I will never forget that pain as it felt like I was ripping open all my internal stitches. In the bathroom I finally got a chance to sneak a peek at my abdomen and was dismayed to see how ghoulish it looked with all the cuts, bruising, and SWELLING. I looked 6 months pregnant!
The first day home was rough, as I really couldn’t do much more than lay on the couch and moan. The worst part though by far at first was the horrible gas pain from the laparoscopy. I discovered Activated Charcoal tabs and that helped tremendously. It was hard to sort out which pains were from what procedure but I figured most of my discomfort came from the hernia repair. Coughing was impossible, and getting up and down from a lying position became an art form. I quickly realized I needed a belly binder and so once I got that it felt better for walking around. I was very grateful for the care from friends and church family giving us meals that lasted about 2 weeks!
About 5 days after the surgery I began to go for short walks around the block. As long as I had my belly binder on I quickly was able to work up to walking 30 minutes by 2 weeks. At 3 weeks I was able to start a simple stretching/yoga routine. I had a little setback with this strange side stitch (which would last all day!) at my main incision site when I was do the yoga and then walk the next morning. I quickly discovered that stretching thoroughly in the morning helped with that. By 5 weeks I could walk 4 miles briskly. I was amazed though how I still would occasionally need my belly binder as my abdomen would get tired easily. The main incision site connected to the top stitch of the mesh was still very tender and lumpy with scar tissue. The mesh was also still sensitive to the touch. Right before I hit 5 weeks I watched some funny clips and laughed really hard (which was painful) and the next day my abs were so sore. Every week did get better but I have to say I was surprised at how long the recovery took. I tired so easily for many weeks, needing daily naps for the first 3 weeks. I was told not to lift anything heavier than 10 lbs. for the first 2 weeks, then nothing heavier than 25 lbs. until 6 weeks at which point I could begin doing ab workouts again as I felt ready. About a week out I had trouble with side ligament pain from the hysterectomy, I believe. That was difficult!
At 8 weeks post-op I began to try and run but found I could only run a mile at most before pelvic and pubic pain would set in and I would have to walk. I decided to run a mile, walk for a few minutes, and then run again. I could only do 2 miles this way. I just did the same thing every other day with pure walking on the off days. By 12 weeks I was feeling better and one day I decided to be brave and run as long as I could without pain (by this point I hadn’t made it past 2 miles without a walk break.) I set out and felt really good, faster than normal too. I got past 2 miles and was delighted that I still had no pain, so I just kept going. The miles started ticking by and believe or not I got to 6 miles and still felt great!! I stopped because I was home and I was afraid to push it more than that, but I never had any pain. Would you know that from that day on, I never had pelvic pain again. I was able to pretty quickly work back up to my previous running routine minus speed workouts and long runs on Saturdays. However it was only another month or so until I ran 10 miles again! Around the same time I resumed yoga once a week. It took me several months to get back to my previous shape, especially doing “upward dog” as that put a lot of strain on my mesh stitches. By the fall, a half year after surgery, I felt like I was fully recovered. My anemia was gone, I had lost weight and was down to less than my previous weight, thanks in part to my missing enlarged uterus. I ran a half marathon and a virtual Turkey Trot 5K, besting my time from the previous year. Living without my uterus has been terrific, I only wish I would have done it sooner. I honestly can’t think of a single downside to it, besides having to have had the surgery experience. I feel terrific and am immensely grateful to be back to doing what I love!
