Sunday, April 28, 2024

Outlier


If you’ve been reading my blog for the past ten years, you‘ll appreciate my similarities to the bagel. 

When I concluded my last blog post, I was looking forward to finishing up treatment and finally moving towards a resolution of our fertility journey. When I finished the two weeks of Cipro and Flagyl together I felt like I won a gold medal. I was so relieved to be rid of those meds and braced myself to endure the repeat biopsy, it would all be worth it because the end was in sight. I just had to wait for the proper cycle timing for the biopsy appointment.

I asked my doctor’s opinion regarding my full time position working nights as I’ve been concerned about harm to a potential pregnancy. I’ve read limited research about night shifts (obviously) messing with your circadian rhythms and hormone regulation, potentially leading to an increased risk of miscarriage.  I wanted my doctor’s advice to navigate this. Clearly, many people work nights all the way through their pregnancy and have perfect outcomes. I just always feel like I’m the outlier. 

My doctor did not feel that it would be a major risk to a pregnancy to continue working nights despite my complicated history. It was a huge sigh of relief to hear I didn’t need to change my schedule, but the relief was short lived. I still felt worried about it. I know of at least 3 coworkers who have miscarried while at work during the night. It’s empirical evidence and probably not clinically significant, but my anxiety wins in this situation. I really feel the need to reduce the stress on my body. It’s no secret that working 12-13 hour shifts, 3-5 nights in a week, is hard on the body. 

Jack and Aidia are nearly out of school for the summer, and as I was trying to determine how to balance work and childcare, I decided it was best to reduce my hours to part time temporarily. While it reduces the cost of childcare, it’s still a leap of faith to drop to part time. I hope by the end of the summer we will be out of this period of uncertainty. By the fall, I imagine we’ll have a better understanding of our fertility situation and can make the best decision about work schedules. 

We are in the exhausting limbo phase. I feel restless and impatient. We haven’t even been trying to conceive yet, and I’m feeling the strain of 6 months of testing with the fertility clinic. I think it feels heavier more quickly because it’s compounded with the past decade. It just feels like this part is taking forever. I either want to be pregnant, or endure the worst and know that the door is closed for us. Trying to plan a life around “what ifs” is so mentally exhausting. My kids are soon headed into 8th grade and 2nd grade. I’m in a totally different phase of parenting and need to know if I’m going to be caring for a baby and a teenager simultaneously, plus one in the middle.

Thankfully, in the middle of all this cognitive dissonance and disequilibrium, Kevin and I were able to go away for a weekend as part of a work conference. It was absolutely the best thing and I needed the breath of fresh air. We jam packed as many activities as we could and it was a reminder of what it feels like to actually be alive; not so bogged down with daily responsibilities and parenting. We even did a zip line, which was scary but I finally crossed something off my bucket list!

The trip was a reminder to me that there is lots of joy to be found in life, whether we get a final miracle baby or not. All hope is not lost, and there is lots to live for and look forward to. We have some summer shows, concerts, and family reunions planned. We’re even taking the kids on a little vacation to Vegas. I’m happy to find what life looks like solidly into our 30s. It’s so much better than our 20s. Aging is fantastic. The “just in case” aspect of planning months in the future is still hard. I worry about “what if I’m going through a loss in x amounts of months.” But, it’s wonderful to feel like I’m actually living my life. I don’t want to wait on it anymore. 

Before the trip, I happened to see a job listing for a PRN position for a RN at Maternal Fetal Medicine. Immediately, I was excited about the prospect, but didn’t submit a resume because the stress of picking up another part time job seemed like too much. More so, I worried about my own personal triggers while trying to care of others. Some of the most traumatic and sensitive experiences of my life have taken place in clinics like an MFM office. But the job stayed in my mind the whole weekend away. Perhaps my experiences would truly serve me in the ability to be a compassionate and empathetic nurse. Since I couldn’t stop thinking about it, I applied when we returned home. Turns out they had already filled the position so I didn’t even interview, but it still felt like a win. Despite my mixed feelings of fear at the idea of working in a triggering environment, I was equally excited about the possibility of serving women in a population I’ve been a part of. I proved to myself that I can still put myself out there, in the speciality of my interest. I can keep progressing while carrying all my complicated feelings with me. 

The time came for the repeat biopsy. I wasn’t looking forward to the procedure but I was ready to move on from these tests. Doing the repeat biopsy was really just for my peace of mind, since the treatment I completed is so effective.

Thankfully the repeat biopsy was much more tolerable than the previous one. Maybe they didn’t remove a polyp in the process this time. I also thought if the endometritis had cleared up, maybe the tissue would be less sensitive. I was very hopeful. 

When my results came in, I was ready to tie a nice little bow on the testing phase of our fertility journey. I was so excited to move on and possibly conceive a healthy baby. The worst surprise. My biopsy came back positive again. The clinic was so sure treatment would work, they said I didn’t need to do a repeat biopsy. The studies clearly show that most cases of chronic endometritis are cured with antibiotics. Again, I’m the outlier. I’m so glad I listened to my gut about repeating the test. Still, I felt so shocked about the result and really sad.


Upon seeing the result, one of my first thoughts came with a jolt. I wondered, “does this mean I need ANOTHER biopsy?” That would be a grand total of 4, 3 of them being right in a row. It hurts my womb just to think about it. I really don’t want to go through it again. But could I risk NOT getting another biopsy after realizing how stubborn this infection is? Probably not. 



I’m wearing out. I could not even imagine doing more antibiotics. I’m so exhausted by all of this. But it’s not even like I can just say “ok we’re just going to be done, it’s too much,” because I can’t just walk around with a lingering infection forever. I started considering the idea of a D&C to try and cure this. Just scrape me out like a pumpkin. It’s fine. Here’s a link to a study published last year about using a surgical approach in the treatment of chronic endometritis.


However, my doctor decided on the treatment that I initially did in 2019: doxycycline twice a day for a month. I'm so overwhelmed. Another MONTH of antibiotic therapy is my nightmare right now. I wish I could just get these meds infused, I am not going to have a stomach left. Plus, fun fact about doxycycline, you are supposed to avoid the sun as side effects include photosensitivity; even a small/normal amount of sun exposure could potentially have pretty bad outcomes. Time to break out the hard core SPF.


The med bottle may as well have read, “Please do not enjoy spring while ingesting this poison.”


Perhaps unironically, this was the same day I started finding my first grey hairs while fixing my hair for work. How did so many pop up all at once?!


I reduced my vitamins for the time being and added more probiotics and lysine to counteract the mouth sores and tummy upset from the antibiotic. It’s still hella pills though.




Fortunately I have a depressing new Taylor Swift album to bask in this week, which is helping a lot. 


Shout out to my Swifties


Fortunately, I have a really great therapist and we’ve been doing a lot of work to help me get through these challenges in a healthy way. I think many people fail to realize that with recurrent loss, all these desperate feelings and disappointments are compounded with all your previous hardships experienced in years before. Small bits of bad news can sometimes feel crushing and you can slip back into horrific moments of loss that came before. 


We’ve been working on “radical acceptance” which is a concept I had somewhat been finding on my own, without the official name.  A lot of therapy principles we work with stem from Daoism and Buddhism. When you remove some of the spirituality, these Eastern concepts morph into very effective Western (clinically-proven) therapy techniques. I love the wisdom found in Eastern dogmas.   


Basically, radical acceptance is a way to prevent pain from turning into suffering. It’s recognizing that reality includes pain, and accepting it anyway. It’s understanding that some things will remain out of your control. It’s accepting emotions and circumstances that may not be changeable. Embrace (and don’t avoid/ignore) what you can’t change. 


In my mind, I go to the Beatles, who summed it up so beautifully. Let it be. 


“Parts work” has been extremely effective for me. I try to acknowledge each little “part” of me and appreciate its purpose and how an emotion may be trying to help or protect me. “No Bad Parts” is a great book if you are interested in learning more about this model.


I learned in therapy that confusion and clarity are two sides of the same coin. If we allow ourselves to sit with the uncomfortable, it can become clarity.


All of this is not to say that things are easy. They often feel heavy, depressing, and I get restless. Not to mention the physical effects from treatments. But therapy like this is getting me through. It helps. 


In what felt like that moment of clarity, I applied for my dream job. A full time NICU position at Primary Children’s Hospital. I was trying to build experience little by little before ever applying, and I thought, screw it, can’t hurt to go for the gold. I have spent the past couple years working in what is essentially a step-down NICU. I mean, I’m not pregnant and my uterus isn’t getting better. I could be months away from even trying to conceive. I don’t want to put off an opportunity for a “what if.” If we miraculously conceive a healthy baby, I will cross that bridge when I get there. 


It’s a big career goal of mine to get my neonatal intensive care certification. It takes a couple years of working in the NICU setting and then you can sit for the exam to get that beautiful RNC-NIC credential.

 

It’s a long shot at a competitive position. I’m sure it depends on what type of candidates apply, especially if there are potential internal hires. I don’t know how I would work out the full time with rotating days and nights, yet. But I would be stupid not to try. Opportunities come and go, and I’m proud of myself just for giving it my best shot.

Monday, April 1, 2024

All I Can Do Is Everything Humanly Possible

I was so thrilled when it came time to schedule my IUD removal. To think, either we’ll have a baby in the near future or we’ll decide we’re finished trying- which would mean a vasectomy for Kevin and I never have to worry about an IUD again 🙌🏻

For some reason the removal was extra painful and made me feel all emotional. It’s so easy to forget how intense pelvic pain can be, and for me it brings back a lot of bad memories from the past decade. I left with a bit of dread hanging over me; knowing I had an SSG and endometrial biopsy ahead of me still. The doc tried to encourage me saying, “You’ve had vaginal deliveries, you can handle it!” But is that really the pain threshold we want to set? Childbirth? Woof.

I had to wait five weeks after the IUD removal for the biopsy. Kevin and I got all our ducks in a row regarding all the supplements and meds we’re supposed to be taking starting now. It’s a lot. Definitely hard on the stomach. If I’m lucky, maybe my hair will get thicker🤞

I completed my initial full-time contract at work, which felt like a huge accomplishment. I’ve been at this hospital for about a year and a half and I didn’t sign a contract right away. I wasn’t sure how to work full time nights with kids at home, plus I was still in school for my BSN. But we needed the money that came with it. I signed the contract and was financially relieved, but pretty devastated emotionally knowing we would have to wait even longer to try for a baby. I already felt anxious to start the testing process after I graduated with my RN. I was nervous to put it off again for an entire year. In spite of the mixed emotions, it feels great to know what I’ve accomplished this year for my family. Both financially and career-wise. It was the right choice and I’m relieved that the pressure of fulfilling a contract is off. Though, I am still full time for the foreseeable future.

I met with my neurologist and my OB; they were both so supportive and hopeful for me, which was wonderful. My OB said I didn’t need to “draw a hard line” at 35 and thought I had a few good years left. Putting biology aside, I think I need to draw a line at some point for myself. After all we’ve been through, having started my reproductive efforts at 20 years old, it’s been a lot of my life dedicated to this. It’s not as if we’ve just been waiting on Mother Nature to do her thing, it’s always a long and expensive process. It’s a lot of collaborating with several doctors. 

It has to come to an end sometime soon. I remember the exact day the doctor confirmed my pregnancy with Jack, because it was 1/1/11. To think that was over 13 years ago. I don’t want us to put more of our lives on hold due to a “just in case.” Closing the door after a tenth pregnancy, no matter how it ends up, will open more doors for us in the long run. More experiences for our children, more financial planning, and more peace.That’s not to say I’m not scared of losing another baby. I worry about falling back into that dark place. I find myself already making a “Plan B” list of things to be hopeful or excited about if a baby doesn't work out. I’m discovering what other goals I could dedicate my efforts towards.

My OB approved my plan to stay on a couple meds during a pregnancy. Also, I can continue all my medications while trying to conceive, which is a huge sigh of relief. It eases the stress and pressure if it takes a long time to fall pregnant. At least I won’t be suffering with chronic pain sans meds.


Lots of notes from appointments on how to try to preserve a pregnancy

Looking at our plan can feel overwhelming and like a Hail Mary attempt. I keep telling myself: All I can do is everything humanly possible.

I will try to give life a chance to grow and accept the fact that I likely have very little influence over the outcome. Most factors are entirely out of my control. Maybe that's also a good thing? If all was healthy, I likely could do very little to accidentally hurt a little life growing.

I try to take courage in the fact that my body has always done everything it knows how, to the best of its ability, to protect new life. I’ve successfully produced a son and daughter, despite all the odds. I'm trying not to live in traumatic moments of the past. Who's to say the next pregnancy won't be perfectly normal and complication free? It's absolutely in the realm of possibility. I’m trying to have faith that “life finds a way” ;)


Appointment day was rough. I felt a little crazy. Why not stay up through the day, then work all night, then stay up into the next day to drop a grand on what feels like having a hole punch eat through your uterus? Why the hell not.

The biopsy was so much worse than I remembered; electricity was just shooting up my spine. Like literally are you sampling my vertebrae in there 😭 I had a harder time with the recovery too, it almost felt post op. I had to splint while walking or coughing and wasn’t allowed to take any hot baths which is my go to for pain management.

The SSG was more manageable and the NP said it was the most “perfect and beautiful uterus” she’s seen in a while. At least I have that going for me.

In 2019 when I was first diagnosed with endometritis, they gave me the choice of doing two weeks of antibiotics with a follow up biopsy, or doing a month of antibiotics with no follow up (because it was like 98% successful.) I couldn’t afford a second biopsy so I did the month of meds and it was just miserable. I know the protocol for treatment has changed in the last five years. We were never able to get pregnant after the antibiotic treatment before we took a long break from trying to conceive, so I was never totally sure if the endometritis cleared up. 

As horrible as the biopsy was, it would be completely worth it if the results came back negative! While waiting on results I put all the vibes out there- please please please be negative. Then the results came in.



And my reaction was somewhere around here:


I instantly felt dread just thinking of the constant nausea from the antibiotic treatment. I was prescribed Cipro and Flagyl and told to take both, twice a day, for two weeks. RIP my gut flora. I am taking a probiotic in between doses to minimize side effects, but I am just so freaking sick. It reminds me of morning sickness but worse, and my head is just spinning all the time. Work has been difficult because when I have 10 patients it’s hard to just run off sick and hide in the bathroom until the cold sweat stops. I will be taking antibiotics until the 10th of April, followed by another biopsy to confirm effective treatment. If I survive that long. The flu-like symptoms seem to get worse every single day of meds. 

My sweet friend just happened to stop by within 20 minutes of me getting the crummy news and brought flowers that she just happened to buy because they reminded her of me. Such an angel. She saved me from spending the afternoon crying.


Endometritis is caused by an infection in the uterus and can be due to several different types of bacteria. It is more likely to occur after a miscarriage or childbirth. It’s also more common after a long labors or a C-section. The incidence of chronic endometritis is very high in patients with unexplained infertility. 

From a scientific standpoint I think all of this advancement in understanding the endometrium at the cellular level is really exciting. Secondary infertility is more common than primary infertility and I wonder how frequently this is a contributing factor. Especially since the treatment is relatively conservative and easy with a high success rate- the data really speaks for itself.

Maybe I’ve had endometritis for a long time. I had 6 miscarriages in between Jack and Aidia. Jack was a long labor (like 28 hours) and a rough delivery. Maybe I developed it after giving birth to Aidia. Or after my miscarriage after her in 2019. I also had IUDs inserted and removed several times through all those years. I do have pelvic pain often, but with fibromyalgia it’s really hard to distinguish actual clinical symptoms when it comes to pain. A biopsy looks at the cellular level so it wouldn’t be surprising to me if chronic endometritis often flies under the radar with no symptoms. I imagine women who unknowingly have endometritis are often diagnosed with unexplained multiple losses or infertility. Even if I wasn't having any more children, I want to treat this to keep my own risks down.

Here’s a Link if you would like to read more about it.

Life will always throw curveballs and we just have to learn how to handle them. My hospital was just purchased by a new company and it really threw all my plans for taking a maternity leave out the window. Losing benefits randomly is scary and it just confirms that all we can expect is the unexpected. I really hope that also means unexpected joyful news. Thanks for all the love and support. Send me all your favorite foods to eat when you can’t eat anything without getting sick ;)

In the meantime, I’m going to do tough girl stuff. Like going to therapy.