Let me start by saying that in no way did I think there would be a part two to my original blog post about my hysterectomy. I’m putting this second piece out there as a personal wish that a physician or another person who also experienced this scenario can connect with me to discuss it. So far I’m coming up empty on my Google searches. After my follow up with my surgeon, I was left dumbfounded.
Roughly two weeks after my laparoscopic hysterectomy, I went to my follow up appointment. A PA came into the room in a strikingly good mood. I remember being surprised because her disposition was like that of someone who had one too many cups of coffee, not only was she flitting around the room energetically, she was very happy, which immediately put me at ease. She sat down and asked me some follow up questions: Did I have any pain? Not really.Was I still taking my heavy pain meds? No. Was there any bleeding? No. Anything going on I felt worth mentioning? Yes, headaches, hot flashes, and fatigue. With every answer there was a resounding “GREAT!” or “That’s normal!” to each of my responses. We’d go over those three symptoms shortly with the doctor. She pulled up my chart and told me that my uterus looked good, and there was no cancer to be concerned about which was excellent news. I stopped her there and asked her what did she mean about my uterus looking good?
“My uterus looked good you mean because there’s no cancer right? But you saw it had the adenomyosis on it, right? Was there anything else going on with it? “
“You didn’t have adenomyosis. Your uterus was perfect.” I suddenly realized it was nervous energy she was emitting.
With that, she said, it’s time for the surgeon to come in and chat with you, she’ll be right in.
My mind was spinning. I felt a jolt of hot anger and then panic as I realized that maybe none of my symptoms would go away following my surgery. The surgeon came in and sat down. She handed me a piece of paper and said it was my report. She said she had great news, that my uterus was healthy, no adenomyosis, no cancer, no endometriosis or anything of that nature. My cervix was enflamed, but that was really it.
“Wait. How can it be that three different tests: ultrasound, CT scan, and MRI were all wrong? Each one said something was wrong with the uterus, and the MRI confirmed adenomyosis, so how can my uterus be healthy?”
“Sometimes these things are a mystery. But either way, you won’t have to worry about having pain, severe fatigue, passing clots, all the bad things surrounding your menstrual cycles anymore, so this surgery was still a very good thing.”
She mentioned it was best I stay on the birth control pill because it actually reduces ovarian cancer by 50% in women my age. I reminded them that these awful headaches started when I went on the pill four months ago, and I would be going off of it as soon as it was possible, but thanked them for letting me know. They asked me to wait to go off the hormones since my body has just had major surgery. We agreed I’d take one more pack before quitting. I took my report, thanked them, and left.
Once I was sitting in the privacy of my car in the parking lot, I called my husband and cried like a baby. The idea of having just had this surgery only to find out all the tests were wrong, my symptoms must be coming from elsewhere, and that I still may have to deal with many of my symptoms was crushing.
I read the report over and over. I did see something that the doctors did not mention, and immediately thought it must not have been important enough to bring up. It was a paraovarian cyst on/in the fallopain tube. This can cause pain but cannot be detected when in the body. These are only found when they look at the organs after they are removed. It was tiny so who knows if this was causing any issues, and again, the doctors did not mention this to me. Honestly, I was just trying to find an answer of some kind to any of this, since it was feeling a lot like I just did all this for nothing.
The biggest shock to me through all of this-is the fact that not one, not two, but three different tests with three different doctors all said my uterus had a problem. How can this be that my uterus was in essence “perfectly fine”? If you are a physician reading this, please write me and tell me about your experiences, if any, with this. If you are a person- woman or man- who has experienced multiple tests being wrong, please write me about your experience. I have never heard of something like this.
Of course my friends have asked me if I would hurl a lawsuit at the doctor. The answer is no, absolutely not. Three doctors all from separate practices interpreted the results so it’s not like one of them lied to get the money for the surgery. The doctor that said it was adenomyosis on the MRI isn’t affiliated with the surgeon at Yale that did the surgery, and that surgeon was actually my second opinion doctor. It just makes this whole experience shocking and disappointing. In my previous article on the surgery, I implored you all to be advocates for yourselves, to get the right tests, to be thorough about your health, but what if the tests are wrong? That thought had never crossed my mind.
Also, two letters came in the mail about a week ago from my insurance company. It turns out my expedited departure from the hospital was in fact not by my doctor or nurse’s urging, it was the insurance company’s decision. They had declined an overnight stay and only gave permission for a 30 minute observation after surgery. This was also eye-opening to me. Why in the world is my insurance company approving whether or not I am allowed to stay in the hospital? And why would insurance not cover that stay? Our healthcare in this country has such a long way to go. No shocker there.
Lastly, while my recovery is going quite well 3 weeks later, I began experiencing that ever familiar fatigue again that I had prior to surgery this week. As a reminder, I’m on iron supplements, B12, and magnesium to try to get the anemia in check. So, while the recovery piece is a definite positive, the reappearance of this symptom I’ve so wanted to kick to the curb has been a bit of a downer. The real interesting part is going to be when I go off the hormones at the end of this month. Will everything come back just the way it was or will my energy and symptoms improve? Not sure, but all I can do is hope to God it’s better! I am seriously not sure what other steps there even are. My next scheduled blood work is in December with the naturopath. While there is so much in my life to be grateful for, it’s frustrating when you are a health mystery with no answers.
Quick update to this post- it has been 5 months since my surgery and my health has drastically improved. The fatigue vanished after that last time I wrote about it above. No more pain, no more heavy eyes, brain fog, etc. My anemia has greatly diminished. And amazingly, I have not had one interstitial cystitis flare since back in September. It turns out my hysterectomy was one of the best decisions in my life.
I’m writing this with women in mind or men who have wives or daughters that have gone back and forth with their medical providers on what to do with their bodies when something is not as it should be. Doctors are not infallible and in the end, it is up to all of us to be our own advocates in many aspects of life, but most seriously when it comes to our health. Never stop seeking answers when it comes to your health.
I’ve had hormonal events or occurrences throughout my life beginning from the age of 15 up until now as a 41 year old. I had D-MER while nursing both my sons, overproduced milk so much that I was blessed with the special hell of mastitis 4 times with each child, gave my second son breast milk jaundice, and apparently became pregnant within moments of deciding to have a baby both times. Hormones not only are fascinating, but are gut wrenchingly, jaw droppingly shocking in terms of what kind of maneuvers they are capable of causing. I have found myself perplexed and in awe when talking with several different women and friends about their different experiences, oddities, and symptoms caused by our little friends called hormones.
When I was 15, I was participating at a cheerleading fundraiser where we were bagging groceries, when to my complete embarrassment, I threw up and passed out. That was the beginning of my tumultuous experience with hormones. Shortly thereafter, I was put on birth control pills due to ovarian cyst issues and that solved all my issues for years to come.
The birth control pill worked wonders up until I was in my senior year in college when I would begin to have this strange heavy eyelid occurrence during my time of the month. It was a symptom I’d get just hours before I knew my period would be on its way. Little did I know this odd symptom would worsen and stay for an extended time as I grew older, as well as the the avalanche of symptoms that would befall me in my late twenties.
At the age of 28 the pill was no longer working any of its magic. I was in agony for 6-7 days a month and needed to find out what was going on. I had a laparoscopic procedure and endometriosis was ruled out. It was already understood that I had an issue with recurring ovarian cysts, but the menorrhagia was a mystery. The doctor’s advice was to speed up our plans to get pregnant if possible. If I was pregnant, it would save me 9 months of agony each month (depending on how you look at it). We had been married a year and were enjoying weekend jaunts when possible as my husband was building his chiropractic practice and I had just switched jobs. It wasn’t the ideal time to get pregnant since I was new in my job and wasn’t quite ready yet for a baby. I certainly wasn’t about to pay for the birth of a baby out of pocket, so best to wait for that health insurance to kick in first.
The following year, my friend of 24 years, Jamie, called me in October and said, “You know what would be cool? If we got pregnant at the same time. Let me chart your ovulation and tell you when to try!” I talked it over with my husband and we nervously and excitedly committed, “Let’s do it!”
On that same call she realized I was ovulating that day. So she said today and tomorrow are your days- go for it. The next month, I missed my period and took a pregnancy test and it confirmed that baby French was on the way. Whoa, I thought, clearly I was on the very fertile side.
A few years went by, and we decided we wanted another baby. After the birth of our second son in 2013, about a year later, it was determined that I was no longer a candidate for birth control. I bled through it for three months. After going off of it, I started having more ovarian cyst episodes, longer periods, and horrible pain. My eyelids became impossible to keep open for 2 days of the 7 and each month. I would have to call out sick or hope that the 2 worst days fell on a weekend. More tests were done and still, it was not clear what was wrong. An IUD was suggested and that was a full week of torture for my nether regions before I went running back and demanded the doctor remove it. It was then he suggested thinking about an ablation or hysterectomy back when I was 34.
I wasn’t really sure then what to do. I didn’t feel ready for a hysterectomy and we had a large deductible with our insurance at the time. The doctor asked how my tolerance for pain was and asked if I could try to just deal each month and take plenty of ibuprofen on days when I needed it. I said I would see how it went. This went on for another 4 years. Trips to the ER for cyst ruptures, pressure on my eyelids going beyond the usual 2 days sometimes stretching as far as the full 7 days. Fatigue crept in and overtook me as a person. Combined with finding out I had a bladder condition (interstitial cystitis) a few years back, my energy was just zapped constantly. I am someone who prides myself on never cancelling plans or breaking a promise, as well as being super active. Cancelled plans, excuses to my boys, and broken promises, all became the new me, thanks to my health deteriorating.
I started to get chronic UTI infections and eventually got a kidney infection. The infection was so bad and lasted 9 days because my physician at the time put me on a very low grade antibiotic and when the symptoms worsened she kept saying she couldn’t help me and to go to the ER. When I pointed out the radiologist was across the street and I could easily have answers within the hour if she called the order in right then, she finally agreed to have me get a ct scan across the street that day.
It was there, after passing out in the waiting room from the pain, I was told that fibroids were in my uterine wall. No big deal, we take care of that swiftly and painlessly, one of the doctors said as he handed me his card. I had large cysts on both ovaries and a raging infection but the fibroid was not causing any of my current issues, they said. I felt relief hearing from this man that fibroids were “no big deal”. I know now that a fibroid was a reason why one of my friend’s could not get pregnant years ago, so thankfully, I was done having children at that point. Following that experience, I decided to get a new primary doctor and was promptly put on stronger antibiotics so that my infection could be dealt with properly.
My infections continued off and on, my hair fell out in clumps, and now the 7 days I was down and out turned into 2 weeks. Not only was I couch bound during my menstrual cycle, I was exhausted and in a lot of pain mid-cycle too. I kept a diary of all of my symptoms and shared them with my new gynecologist. She said I should get an MRI. My husband and I wondered what an MRI would show that a ct scan and ultrasound (which I had had several months prior)had not already shown. The doctor explained that an MRI shows the whole picture and a level of detail that those other tests simply do not. This was important information that we were unaware of. She said the MRI is the test that actually tells us if what we’re looking at is cancer. I could not believe the other doctor had not recommended an MRI earlier after hearing this sentence and I thanked my lucky stars in that moment.
The MRI came back and confirmed I did not have a fibroid. I had what is called adenomyosis. This is a condition where the endometrial tissue exists within and grows into the uterine wall. It is very painful, causes severe fatigue, anemia, and can worsen over time. It appears late in childbearing years and disappears after menopause. When given the diagnosis, the doctor recommended I go back on birth control to manage the horrible hormonal symptoms happening for 2 weeks to me each month. My husband was confused. His first response was,”The only cure for adenomyosis is a hysterectomy. Why are we bandaiding this?”
I went back and forth for 3 months with my new gynecologist about my symptoms after trying to go back on birth control pills to manage the adenomyosis symptoms. Some symptoms thankfully did go away, some did not and some new ones started showing up. I asked her about ablation or hysterectomy but she said she was really averse to any surgery and her overall goal is to always avoid surgery if possible. I decided in that moment to get a second opinion. Why wait and leave this in me and suffer through any longer? The second opinion was with a gynecological oncology surgeon at Yale. She took a look at my MRI asked me about my symptoms and agreed this was a great option for me. She asked me to think about it for two weeks before making my decision. But in my gut, I already knew that I would be getting a robotic laparoscopic hysterectomy as soon as it was possible. I left that appointment with an extra bounce in my step, knowing I was on the way to getting my energy and my life back. 2 whole weeks of every month back is a lot of time with my husband, kids, job, and friends.
On Thursday, September 17th, my husband and I made our way to Yale in the dark of the morning. My surgery was the first one of the day at 7:30 and we were to arrive at 6. My Mother-in-Law would arrive to the house in the morning to watch the boys for one night and two days. One of the most shocking things about this experience was that they discharge you almost immediately after. It’s kind of insane. They’ve just taken my cervix, my uterus, and my fallopian tubes out and now I will be sent home to heal. I think a one to two day stay is much more appropriate, but maybe that’s just me.
I had completed my pre-opp assignments prior:COVID-19 test, lung X-ray, bloodwork. I was so worried that one of those things would derail the surgery, but thankfully they did not. They put the anesthesia mask on me and went to work. 4 incisions across the belly total, one through the belly button where a camera is inserted to check out the gallbladder, liver,etc. to look for anything else being amiss. The surgery lasted approximately 2 hours and I woke up around noon. All went well and my other organs looked healthy. Just as I was opening my eyes the nurse approached my room.
“How are you doing?” she asked.
“Good, when can I see my husband? Is he allowed in here?”
“I’ll get your discharge papers and he can come up as long as you’re being discharged.”
I thought I was having a lucid dream. A few minutes later, my husband was standing in my room and the nurse was reading my discharge instructions. I didn’t need to walk around, use the bathroom first, or do a test to see if I could keep food down. They sent him down to grab the car from the valet and moments later, a man with a wheelchair showed up to take me down to the car.
Once outside, I nodded in and out of sleep for what felt like an hour while waiting for the car. It felt like an hour because it was an hour. The valet woman never entered my husband’s ticket number into the machine so the valet man never received instructions to go get our car. After 52 minutes of just hanging outside in the wheelchair I yelled at my husband to please do something or yell at someone to get us the hell out of there! The other people who had been waiting alongside us cheered me on and muttered their grievances too.My husband tentatively approached the valet and softly expressed something that did not sound like a patron who had been waiting with his heavily drugged -just-had -surgery wife who had been waiting outside for their car for an hour. Finally they realized their mistake and the car finally showed up.
From there my husband drove me to my dear friend’s home. I will be forever indebted for this kind and nutty offer. She offered to be a nurse to me during my first few days home from the hospital since it would be difficult to get around.It was also an offer of refuge from my home where us moms find it impossible not to get up and help the kids with something, put a dish away, or to truly be left alone to rest. The default is often mom will do it, so when we’re taken out of the equation – it’s much easier! Thank you, sweet Andrea!
Today is my 6th day of recovery and it’s going well. I stopped taking the heavy duty pain meds on Saturday and have been alternating between ibuprofen and Tylenol every 4-6 hours. I get tired very easily and sleep a lot. The incisions are a bit sore, but manageable. Stupidly, I cleaned my kitchen and the boys’s rooms yesterday and then could not move the rest of the day and slept for the rest of it. Won’t be doing that for awhile so if you come over anytime soon, I apologize if my house is trashed. I plan to drive tomorrow for the first time to pick up my son from school. My post op appointment is in a few days when I will hopefully get the biopsy results from each of the organs they removed. Fingers crossed on that.
While I was on the path to getting this sorted out, I was told that my ovaries may continue to wreak havoc with cysts, and the heavy eyelids, and the mid cycle pain. It’s not ideal to take the ovaries out this young so we thought it best I keep them. As a result of knowing there may still be some issues to be dealt with, I enlisted the help of a naturopath who discovered my anemia, my complete and utter lack of ferritin (hello hair loss!), my lack of estrogen, high cortisol, borderline thyroid, among a few other things. I’ve just received my 20 supplements to take- booyah! Just kidding – it’s like 8 supplements not 20. My counter has like a million bottles on it at the moment. But bring it- I will take whatever I can to kick this anemia’s butt and try to get some healthy hair growth going on.
This recovery period brings me such appreciation for the friends in my life. Friends are truly my fam here in CT. A friend who I met through the PTA two years ago at my sons’ elementary school offered to organize a meal train for 7 days for lunches and dinners to be delivered to our family which has been an enormous help and extremely generous. My husband is totally anti getting anything for free like this so he is mortified that we’re receiving a meal train. Meanwhile, I don’t know what I’d have done without it so THANK YOU, Anna.
Friends have come and sat in bed with me, stopped by to have conversation, and brought me fun mags, cushy robe and soft socks, and other thoughtful messages and items. They’ve picked up my kids and dropped them off while some have taken them for a few hours each day so I could sleep in peace. They are all extremely busy women, who have families and jobs and it makes me get all annoying and emotional and gooey just thinking of how much they’ve done for me these last few days. It takes a village and I’m so grateful for mine. My friends who don’t live here who are in Ohio and Illinois, have checked in daily and for that I feel loved from afar. When you’re out of it and healing and away from the world in your bed, it feels so nice to feel the love because it can feel lonely otherwise. My boys and husband have been so sweet, and gentle, and helpful too.
I am so pumped to get through this recovery period (which I’m hoping will be wrapped up in 2 weeks) and to start my new life with renewed energy. My uterus cannot hold me down anymore! If you’re getting the same stale answers from your doctors, and you know in your heart you should be getting a second opinion-do it. If you’ve had chronic, debilitating periods, keep getting tests until you get answers. Make sure you are getting the RIGHT tests and thorough treatment.