What Now.

Well hey there

Last time I wrote was the day before my endometriosis laprascopy. The night that I thought everything would change, and well I mean it did… but not the way that I thought things would go. I posted on my Facebook post surgery that Endometriosis was very present during surgery. There was pooling of blood that proved the disease even more and that my pain wasn’t in my head. Turns out I’m not crazy!! Well, in this circumstance.

My OBGYN/surgeon was VERY hopeful that my pain would diminish significantly and I would get pregnant quickly. I wish she wouldn’t have used a timeline on when she expected me to get pregnant, or to ever use a timeline for someone who struggles with infertility. That I would have no problems getting pregnant within three months post surgery. The hope that I had for this surgery, had my quality of life and families future riding on it.

One month post surgery and I was having EXCRUCIATING pain not only during my menstrual cycle but now during ovulation. I have always known when I ovulate, I would have mild cramping and was able to tell which ovary released the egg due to sensitivity of that region. So these new symptoms were concerning to me, I was having troubles walking while I was ovulating?? I knew this wasn’t right. So, I called my OB-GYN to follow up with an appointment.

They couldn’t get me in for a week or so. During that time I redownloaded TikTok after two years of not having it. Call this fate or whatever but one of the very first videos I came across was someone advocating for a clinic called The Radiant Clinic and low and behold it was located in Cedar Rapids. This woman was eerily familiar in her frustrations of not being diagnosed and treated for Endometriosis for so long, not being listened to and being frustrated with women’s health practices. She explained how Radiant Clinic is more of a holistic approach to women’s health and how this doctor looks at EVERYTHING. I then google this clinic and I kid you not I couldn’t find one bad review. This sounded too good to be true so I posted on Facebook asking if anyone has heard of this clinic, and again, nothing but amazing reviews. So, I called the next morning, they unfortunately wouldn’t have answered my 11pm manic self thinking I found lost treasure on TikTok. I do the intake forms, talked to the doctor herself, Jesse does intake forms and we proceed with a lab schedule to do some findings before I make an in-person appointment.

Fast forward to my OB-GYN appointment that I finally get to. I talk to my doctor about all of the things that have been going on since surgery, the symptoms that didn’t go away and now the new ones. At the time I didn’t think of it but she instantly went to a recommendation for the University of Iowa fertility clinic. For me, I heard University of Iowa and I think oh wow wonderful, maybe I can get some answers. I then get told that my Endometriosis needs further care and that was basically it. Also during this appointment I was told that I really should’ve gotten an ultrasound before this appointment. Okay? Of course they couldn’t do it that day so I had to wait another 5 days for that. Right before I leave that appointment my OB-GYN goes, “And I see that you sent your records to Radiant Clinic, I just want to warn you about that. She was a prior primary care doctor, not an OB-GYN and her practices aren’t FDA approved.” My empathetic self felt ashamed and I APOLOGIZED to her saying that I was in a dark place and felt so alone. I basically ghosted the Radiant Clinic after this, even though I have never been so impressed with a doctors offices care right away. They kept checking in through texts and phone calls if I was okay. They even called Jones Regional to ask if I had been in to do labs as they just wanted to make sure they didn’t miss them.

Press fast forward again. I do my ultrasound, the ultrasound tech hands me my results stapled up, I wait in the lobby to discuss these findings with my OB-GYN an I of course peak at the results. The results stated that I now have a 3mm cyst on my right ovary and my left ovary shows signs of adhesions to my uterus as it is now not moving freely. Well, this doesn’t sound promising, and google of course doesn’t help either. My name gets called finally. My OB-GYN walks in and says “sorry I’m late, there seems to be a baby boom and everyone is pregnant.” I stare at her dead panned, in shock?? I get told “no wonder you had so much pain during ovulation, this type of cyst grows during peak ovulation times.” Well, heres my clarification that I am indeed not crazy again. Then the talk about my ovary being stuck to my uterus. My chances of naturally conceiving have now dropped to single digits every month. Now that I look back, I get the sense that she was tip-toeing around the fact that I had NO adhesions concerning my ovaries prior surgery. She went right into that IVF is my only option now if I want kids and I need to call the University of Iowa to check in with my referral with them. IVF is my only option now, according to her, because your ovaries need to move in order for them to “catch” the egg/fertilized egg (I’m not a doctor so I apologize if my terminology isn’t correct). Let me tell you the dark hole I went into after this appointment. I cried, better yet I SOBBED.

The hopes that I had for this surgery felt instantly crushed. Now I’m circling in my brain about how in the hell are we going to pay for IVF AND build a house? I stepped down from my career so I could have the opportunity of a more flexible schedule so I can be with my son more. It truly felt like all of the decisions I had made prior felt like I was an instant failure.

I started documenting my journey through TikTok. Let me be clear, I am not a TikToker and have no idea how I edit anything. So, I hit the ten minute time limit button and just freely, cringely talk. Squirrel brain and all. After posting my experiences so far, having talks with family and talks with Jesse I came to a realization that I think I was avoiding all along… that my OB-GYN failed me. Why wouldn’t she want me to seek out other options besides the University if “there was nothing else she could do for me.” Her words. Is this whole healthcare system just a big money scheme? Where they push surgery, avoid ACTUALLY what is going on. Because IVF could very well give me more children but will it fix what is going on with me internally? I will come to find out in the near future after this just how much she had failed me.

So I call the University the first time and get told that my insurance is documented now and will just have to wait (this has been a month since the referral.) I call again a couple weeks later and word for word I tell you… “we have been waiting for you to call- we need Jesse’s health information.” I stare, dead panned again at the phone. A miscommiunication? Okay. Whatever. We get my and Jesse’s information sent over.. we get told that they are now booked out until end of June for a consult. Dead panned again. This is beginning of April. I am tired of waiting. Is two months that long of a wait? Not really but I was just over being pushed around by doctors. So, I remember someone reaching out about the Davenport clinic that is also connected to the University of Iowa. I call them and they get me in for May 20th for a consult. Hallelujah.

I know that this is a much longer blog than what I used to writing but I think it’s good for my well being to just put it out there, it is surprisingly very comforting. What I think is absolutely incredible is the amount of SUPPORT from others that have reached out or have been willing to talk to me about their experiences with IVF. It is a scary thing to even think about and to go through. No wonder it is usually a silent journey for others. One night I went over to a friend’s mom’s house and talked for two hours. She allowed me to be mad, sad, manic, etc. What I wish was for me to ask questions before I even started this journey long ago, her story is so important. I thank her so much for that selfless two hours of hearing me. I had no idea she had endometriosis and that was a reason of what led her to the University of Iowa.

Back to the Radiant Clinic. During my come to Jesus meeting with myself, I realized that I owe it to myself to seek out help for ME. I called Radiant Clinic, told them a bit about what was going on with my OB-GYN and I am back on track to doing my time sensitive lab workups. They were wonderful and understanding of course. It took me about two months to complete the labs (it would be longer but my body decided to be even more wacko.) Anyways, we get to the appointment (they encourage husbands to come.) It’s a beautiful clinic, it feels like you’re in Jurassic Park with the giant windows overlooking trees. Really trying to set the scene here. We meet Dr. Minjeur and she explains how the appointment will be broken up into three sections; our medical history, my lab results and treatment. She is talking to Jesse and I BOTH. Which is important. Instantly I show her my water works because we talk about my last ultrasound and she understands the gravity of the results she looked over. She showed so much compassion and that didn’t stop her into thinking surgery/IVF is my only solution. Then we get to my lab results, this was mind blowing. What was shown was that I have a condition called Euthyroid Sick Syndrome, it’s basically where my thyroid is working correctly but the processes following that are not. We found that my testosterone levels were so laughably low. I asked her what are some symptoms of this and she said fatigue, muscle weakness, low libido, etc. Which was me to a capitalllllll T. I’ve complained to Jesse how “weak” I feel even though I am so active- I can’t sit down. Moving has proved that and now everyone can stop calling me weak haha. We also found that my progesterone levels post ovulation were not where they should be, also laughably low. If I were to get pregnant, my chances of miscarriage double instantly with my levels. There were more findings but these were the most important for me to talk about. You know what is fantastic? (sarcasm). My progesterone and TSH (thyroid lab test) have been tested before for years and they showed alarming levels. You know why I know this? Not because I knew but because Dr. Minjeur requested ALL of my records from OB-GYNs. At this appointment we looked back at labs from 2022 that showed my body was not doing what is was supposed to do. Dr. Minjeur apologized that I was never listened to.

This makes my 11-year-old self so sad. I was passing out at volleyball practice and my OB-GYN (who is at the same clinic I go to now) just slapped birth control on me and that was it. I say on me because I started with the patch. No one thought to do a deeper search after 17 years until now? I’ll stop that rant for the moment. Dr. Minjeur gave me four supplements and three prescriptions to try and reboot my system after it’s basically been starved of nutrients/chemical inbalances I couldn't have known. We also had the difficult conversation that yes, she can help fix the hormonal imbalances but that can’t fix the adhesions left after surgery. She recommended Pelvic Floor Therapy (which I absolutely loved doing in Phoenix) that could possibly help relieve the adhesions. What she put on my future plan was finding an actual Endometriosis Specialist. Fun fact, it is “normal” for people with Endometriosis who do the laprascopy to have it done every two years because it has a 40-50% reoccurrence rate. That is really, really silly to me. She gave me a few specialists who have proven to have a 2.5-5% reoccurrence rate of endometriosis because they do it differently. Yes, it is more invasive and it is a two part process but WHY NOT try to fix it all rather than have your patients see you MULTIPLE TIMES THROUGH THIER LIFE doing the same surgery with the same results. It’s a $20,000 surgery. That is truly disgusting to me when I think about it.

What I loved about my experience with Dr. Minjeur was that she encouraged me to do the consultation with the University of Iowa on May 20th. She was all about doing what is best for myself and family. It was explained to us that we do have to choose between doing treatments with the Radiant Clinic or jumping straight to IVF as doing both treatments at once would be harmful. So, that is where I am at. Finding answers, making decisions and trying my absolute best to be positive and hopeful.

If you’ve made it this far I want to thank you. If you didn’t, I don’t blame you either. I wanted to talk about WHY I’m so open about talking about this. If I can help just one young, young-adult, middle-aged, elderly woman who has/had gone through something similar that would make me feel complete. It is a VERY lonely, confusing journey. It’s a club that welcomes you with open arms but is one that you sometimes don’t want to associate yourself with. Women’s health and advocating for yourself is so incredibly important.

I want to make it known to those in my life who have big families, who don’t have to know about all of these terms regarding infertility, who can choose when to get pregnant, that I am so happy for you. Does it make it hard sometimes and I have to protect my peace? Yes. Do I ever want you to pity me or hold yourself back from telling me things? No. I am a believer that children are blessings in this world and knowing that they are with loving parents is incredible. What makes it personally hard is that I selflessly know just how good of parents Jesse and I are to our son Aspen. It hurts my heart knowing that Aspen wants someone to play with at home and how much he craves a buddy to play with wherever we are. Taking him to daycare a couple days a week (who I love dearly) was a hole that Jesse and I could temporarily fix for him as he can run and play with kids. I would do anything to give Aspen a sibling and welcome more children into this world. That is a fight that I am embarking on and will continue as long as it is possible. I have had the internal conversation with myself that if Aspen was our only that we are blessed and will never let him feel that heartbreak of what if from me personally. I/we are totally in love with him. It was amazing that he even came into this world in the first place. Especially knowing what my body has been fighting for years.