We just got back from a follow up with our current doctor (8/12/2015) and it wasn’t great. I figured I’d better catch up on our story so we’re up to date. This is going to be a LONG post. If you choose to read to the end, I get a little mushy. You might cry. I did.
So I got a little mixed up in the last post. We did the IUI and a progesterone blood test in April, and everything was looking good. IUI failed and we didn’t feel comfortable doing another one without getting some tests done. I called the doctor and we insisted he do some tests before we did any more procedures.
THEN CAME MAY…He said we could do an ultrasound and some blood work to check my eggs. So we went in and he did the ultrasound, took some blood, and sent us in for another HSG (the uncomfortable x-ray where they fill you with gas and iodine dye). The frustrating thing here is that he didn’t remember me. He came in and said “you don’t have anything abnormal going on, right?” Um…yes. Abnormal bleeding, pain, and my cramping has changed. You suspect endometriosis. Seriously!?! He was starting to bug. Anyway, the ultrasound was good. The HSG was fine. The blood results came in the mail in a nice packet with charts and colors. I googled the test results and all hormones were normal…except for one. My FSH came back really high. FSH is the follicle stimulating hormone. It jump starts your ovaries to get those babies (follicles) growing. Less than 8 is normal. Mine was at 11.9. This particular assessment, called and OAR (Ovarian Assessment Report), gives you an egg retrieval score and is designed to help assess whether you’d be a good candidate for IVF, to be a donor, as well as overall egg quality. Based on my age and my results, I landed in the “fair” zone. Not good, not excellent, but fair. I was super bummed. We waited and waited to hear from the doctor so he could explain things to us. We heard NOTHING. I saw my results get posted online, I had the charts in my hand from the lab, but I didn’t know what they meant and nobody at the Reproductive Care Center had called. He was REALLY starting to bug.
After a week or so, I called and asked if I could meet with the doctor about the results. The nurse sounded surprised I wanted an appointment, but scheduled it anyway. I was scared that it meant we wouldn’t be able to have our own kids. Jeff rocks though, and said “It doesn’t matter how we get our kids. They will come from Heavenly Father, and that’s all that matters.” He’s awesome and so positive. I love him and I am grateful for his attitude! So…this email I sent to our moms sums up the appointment.
“So…we visited with the doctor today to follow up on my blood tests and the second HSG. We learned a lot more this time! My left tube wasn’t blocked this time, but it was still slower to move the dye through. Could be scar tissue, mucus, or back flow from regular bleeding. That’s not necessarily bad news on it’s own! Tubes are still open!
My blood work came back normal, except FSH (follicle stimulating hormone) which is at 11.9 (less than 8 is normal, and 12 and higher indicates a poor prognosis for IVF). That led to an egg reserve score of 9. (16-20 is excellent, 10-15 is good…so we’re are in the fair zone). After the ultrasound he said the egg count was fine and since all the other blood tests were normal, he suspects endometriosis (which could explain the pain on my right side every few months). The high FSH could mean a decreased ovarian reserve, meaning there are less follicles developing so the brain is compensating by creating more FSH. Or, and this is what he suspects, the endometriosis leaves scarring and that may have “kinked” the tubes and stuff so the blood/hormone flow to my ovaries isn’t great…so again, the brain compensates by producing more FSH. He also said when you have endometriosis the body’s immune system creates chemicals to fight it and keep it from spreading to other areas in the body. Those chemicals can also attack sperm, which obviously creates a problem. As far as treatments, we can keep trying on our own (duh) but chances are lessened because of the high FSH, we can try medication and shots followed by IUI, or we go for IVF. It’s going to get pricy no matter what we do. …. For now though, we are planning on doing the Clomid Challenge Test in July (ish) to make sure FSH isn’t too high for IVF (if it’s goes above 14…the doctor kinda shudders) and then the next cycle we’ll try medication/shots and IUI. Maybe in the next month or so we’ll just get lucky…before we give away our entire savings account! Haha! If not, Jeff thinks this may be why he’s been so blessed at work.
So that’s what we know now! Not awesome, but not terrible I guess. It could be worse! We aren’t feeling too worried about it, which is nice. I was kind of freaking out when I saw my blood results because I didn’t understand them. But after talking to the doctor, praying a lot, and reading my patriarchal blessing…we feel ok about everything. Somehow it’s all going to fall into place. We don’t know when or how, but right now it doesn’t really matter! We’re just happy we’re healthy (mostly) and grateful for a good life.
Anyway, we just wanted to update you! Thanks for the prayers we know you pray for us! We appreciate it a great deal!”
So…again, endometriosis. But again, it’s not a big deal and shouldn’t cause infertility. You don’t need surgery. Right!?! Are you as impressed with this doctor as I am? We went ahead with the Clomid Challenge Test (I took Clomid for a week and then they tested my blood again. I hated the way Clomid made me feel, ps). I got the second OAR results in the mail with the fancy charts and colors. I saw the results posted online. From our conversation with the doctor and my research, everything was NORMAL. My egg score was Good/Excellent. We were so excited. But guess who NEVER called? That’s right. The doctor. We had been frustrated with him long enough. First, he jumps to treatments without any testing, he disregards my symptoms, he doesn’t call and explain results, his only concern (so it seemed) was to “just get us pregnant.” So we decided we were taking a break. I stopped charting, I never called the center to follow up,…I just quit.
Sometime in October/November, we started thinking about adoption and foster care. We tossed the idea around for a while and on Christmas Eve decided we were moving forward with adoption in 2014. Happy New Year! We told my family on Christmas and went to orientation at LDS Family Services in January. We got our letters from the Bishop and got assigned a caseworker. She was impossible to get a hold of so it wasn’t until mid February we finally met with her. She said everything looked good and we should get approval to start our application in a couple weeks. YAY! We were sooooo excited. Then came the hoops. They needed Jeff to meet with this counselor and they wanted more information about things. We had just gotten a new bishop in November, so they wanted a new letter from him. All this stuff took forever (not on our end…we were anxious and ready. It was all LDSFS being turtles). Our caseworker was hard to communicate with. We rescheduled a few times and each time it took a few weeks to set things up. Then in April/May, we met with our caseworker and her supervisor. More hoops. I was mad. I was mad about their requirements and their lack of understanding for who we are and our situation. Once again, we felt thrown into this “one size fits all” protocol, just like at the RCC. In May, she called and asked if we were going to follow through, and we said we weren’t sure. Then in June, they announced the change to LDSFS involvement in adoption. We were frustrated. If we had been approved (we should have been) we would have been able to remain in the pool and they could have matched us with a baby anytime until the end of 2014. At that point, it wasn’t worth it for us to continue with them. It would’ve taken too long to jump through their hoops and get approved. We were stopped in our tracks again. Shortly before the announcement, they asked me for a review of LDSFS and I wrote my feelings out plainly and boldly (which isn’t like me…I tend to sugar coat). I told them we were frustrated with the time it took to hear from our caseworker and the lack of communication. I told them we were unhappy with their one size fits all approach. I bore my testimony about the power of the atonement, forgiveness, and repentance. I told them I felt that since we were sealed in the temple, worthy to be in the tempe, and living worthy lives, we shouldn’t have been delayed and forced to jump through so many hoops and now, we were out of luck. Obviously, I never heard anything back, but I felt good about and supported in my testimony to them. We went to an adoption fair in July, hosted by LDSFS to help couples like us who were getting the boot, and gathered information from as many agencies, lawyers, and home study groups as we could. It was fun, but something had changed. We chose not to pursue adoption at that point.
In April, as we were trying to navigate the frustrations of adoption with LDSFS, we also started seeing our current doctor. He was recommended to us by my good friend Jenn who taught us how to chart my cycles 4 years earlier. Dr. Stanford works under a branch of medicine called Natural Procreative Technology. More Info Here He is very passionate about treating the underlying causes for infertility. PERFECT for us. We met with him and after looking at my charts, he immediately pointed out some problems. Pain, bleeding, poor quality cervical mucus, all the things I tried to tell the other doctor. He started regular blood tests, ultrasounds to track ovulation, and Letrozole (Femara) to aid in ovulation. We learned within a few days I was low on Vitamin D and my progesterone is borderline low. We started supplementing immediately. He put us on Letrozole instead of Clomid because Clomid dries you out and I already didn’t have good mucus. Smart man! He also recommended surgery for endometriosis right off the bat. It DOES interfere with fertility and hormones. DUH. I was relieved and I was in love with his methods already. This is what we’ve been waiting for! A doctor who can see and treat the issues, not just mask them.
So we did ultrasounds in June and in July. I was for sure ovulating, but occasionally a follicle on the right takes a few weeks to collapse. No big deal he said. Things were looking better already. Some of the mid cycle bleeding that shouldn’t have been happening was going away with the progesterone. My hormone levels were starting to normalize. Yay! Then in both July and August, I was a few days late (that never happens to me, I’m super regular). I didn’t get a positive pregnancy test, but I did pass two tissue masses each month. He said it could’ve been an early miscarriage or just large blood clots. Without a positive pregnancy test, we couldn’t be sure. So we moved on and got surgery scheduled for September.
The pre-op meeting was interesting. The surgeon (Dr. Arrington in Ogden. AMAZING) did a pelvic and a rectal exam and said he felt the endometriosis was pretty serious. He couldn’t tell for sure, but thought it might be on my appendix and rectum, which meant they’d have to remove the portions of the rectum affected by the endo and then stitch that back up as well. It was already going to be painful enough, and now he’s talking about cutting apart my poop tube!?! I was freaking out a little. He said they’d take my appendix either way because who needs it anyway? He was very comforting and entertaining and encouraging. He assured us he’d be extra careful not to damage any of my reproductive organs because he knew we were doing this for infertility. He billed the surgery as “pain management” because the insurance covers 80% if it’s not classified as infertility. That was a HUGE blessing. We were expecting to pay at least 50% if not more for this. Hooray!
So surgery…I had to fast the day before, which is really hard when your teaching. I am always starving after school. But somehow (prayer I am sure) I fasted and didn’t feel hunger pains almost at all! I also had to use enemas to clear me out all the way. I couldn’t do it alone, so Jeff had to help insert and squirt. That was the most awkward moment of our married lives so far, but it worked! We were cleared for surgery and things went as well as they could have. Dr. Arrington (and Stanford) was right, the endometriosis was pretty severe, but he got most of it. He had to burn a little off my ovaries, but he said they were fine. He did not find any on my rectum, so my pooper remained in tact. It was as good as we could have hoped for. Jeff was so sweet and took such good care of me as I recovered. My school got me a candy bouquet and were so helpful as I tried to teach without using my stomach muscles. Recovery was smooth, except for the fact that I kept hitting my left hip bone on counters, which reopened the wound and hurt like he…ck.
After surgery, my cramps were worse than ever for a month or two, but they’ve gone back to normal for the most part. In October, I got a UTI infection, probably due in part to surgery. I’d had a couple before, but they always went away on their own with extra water and cranberry juice. Not this time. After a week, I went to instacare. They did some tests and didn’t find anything, but I was still symptomatic so she sent my urine to an outside lab for a culture test. I called a few days later. No results. I was ok, but not better. On Sunday, Jeff left for a thing with Adobe in San Jose and I was running YW in Excellence (I created a whole “Newsies” themed program and it ROCKED). During the program, I started to feel sick. Feverish, headache, body aches, the whole works. We cleaned up and I went home and got in the bath. I called Jeff in tears because I was in so much pain and discomfort. I didn’t sleep much that night. Or Monday night. The pain spread to my back and I tossed and turned and went from heating pad to ice all night long. Nothing was helping. I called the Instacare back on Tuesday and in tears asked her to please figure something out because I was in pain and running a fever. She looked and found that they had misplaced my results (which is why they couldn’t find them when I called the weekend before) and sure enough, I had an infection. It had apparently spread to my kidney (hence the pain and fever) so she put me on heavy antibiotics. I was frustrated, but grateful because the antibiotics started working immediately. I am sure this was made worse because my pelvic area was still recovering from being scraped and burned in surgery.
In November 2014, we did more ultrasounds. All was well! The doctors were pleased with everything except my mucus. After Christmas, we started a 6 week round of antibiotics (Jeff too!) just to make sure we were both clear of any infections. Right away my mucus improved in quality, consistency, and amount. We were stoked, except for the fact that the antibiotics made me nauseous and my mouth tasted like metal ALL THE TIME. Yuck. In January, the doctor said things looked awesome and we could get pregnant any time! Everything was almost perfect. We continued with Letrozole and progresterone and I finally felt like it was possible. I finally let myself get excited. But January ended with another late cycle and passing of large tissue masses. No positive pregnancy test, so we still can’t say if it’s early miscarriage or blood clots. Bummer. We continued on with our routine and follow ups. In February, I made the incredibly hard decision to quit teaching. Everyone said “now that you’ve quit, you’re going to get pregnant. Just you wait!” I believed it. Then March. Then April (another UTI and possible early miscarriage/blood clots). Then May. People said “You’re going to find out your pregnant on the last day of school!” Then June. At our appointment, the doctor was concerned that I still have several days of brown bleeding after my period. Double the progesterone he says!! That might help. He did an ultrasound, just to check some pain on the right. There was a follicle that looks a little big on the left. Hmmm… Then July (another early miscarriage?). Another ultrasound to check on that follicle. Good news! It looks fine! Keep doing what your doing! We’re SO close to getting you there!
We mentioned IVF to him at this point, and he’s not a fan. Because he’s natural, he doesn’t do traditional infertility treatments. He really wants to fix the underlying problem and so far he’d done a great job with making sure we did surgery, with the medicines and vitamins, and the antibiotics that helped with my mucus. We have been impressed with him and so grateful for him. We left that appointment and I was feeling pretty good. We’ll get pregnant this month. Or next month maybe. I was/am hesitant about IVF. It’s hard on your body, but Jeff was still set on IVF and I told him September was when I’d be willing to start. Adobe has the best insurance and since we’ve met our deductible, they’ll cover 90% of IVF. AMAZING. So we thought we’d wait until our next appointment in August and we’d move forward with IVF after talking to Dr. Stanford once more. Then August. Today. 8/12/2015
We went in for a follow up. Dr. Stanford wanted to see if the doubled progesterone took care of the brown bleeding. It didn’t. I have also been experiencing pain on my left side the past 6 days. It’s got worse around ovulation, but it’s still there. He thought it would be a good idea to check it out with another ultrasound. Everything on the right was fine, but he couldn’t find the ovary on the left. There was a large mass of some kind. He couldn’t tell if it was my ovary (enlarged obviously) or something else. He pushed around and felt around and still wasn’t sure. He hurt me in the process, but he said it was my uterus that was causing pain as he pushed. Weird. He left the room to analyze the pictures of my goods and I got dressed. When he came back in, he explained that he and another doctor looked at it and suspect it’s endometriosis growing on the ovary. The odd thing is that it grew so large, so fast. Uncommon for endo. He said it could also be a rare type of benign tumor/cyst, but it’s also uncommon for it to grow so fast. He just doesn’t know. So the next step is an MRI in a week to investigate it. We had originally planned to tell Dr. Stanford we wanted to start IVF, but with this new development…we just don’t know where we’re headed. All treatments and medications are on hold (except progesterone…I’ll still take that) until we figure this thing out. We’re a little worried, but one thing we’ve learned through all this is that whatever happens is part of God’s plan. He’s in control and He’ll make sure it all works out the way it should. He is constantly sending me reminders and peaceful, reassuring feelings that He’s there. I feel and sense Him saying “Shhh….it’s alright. I’ve got you. It’s going to be fine.” And here we are again. It’s going to be fine.
So that’s it! Almost 4.5 years of trying, being poked, prodded, cut open, and drugged. And we’re still not there. We often pray for a miracle. For our baby (ies) to join our family. Most often we pray for patience and for peace and I know that prayer has been answered. I have mentioned that a few times to people. Our prayer for peace and patience is answered. Thus far, we haven’t been blessed with the miracle of a child (I’ve dreamed about them!). But I realized while on Pioneer Trek this Summer, that sometimes we don’t get the miracle we want, but if we pray for a miracle…we get a miracle. I reflected on the past 4.5 years while I was sitting around the campfire listening to the amazing youth bear testimony of God and His goodness. And it hit me. The Spirit taught me something. We have been blessed with the daily miracle of patience and peace. It’s not just an answer to our prayers. It’s our miracle. We carry a heavy burden. A burden that brings many to tears, to depression, to anger, to isolation, and to bitterness. While we’ve been sad and frustrated at times…we mostly feel peace. I can count on one hand (plus a finger or two) the number of times I have broken down and “lost it” in the last 4 years. And even when I lose it, it only lasts a few minutes before I am back on my feet and ready to face the world again. We are being blessed every day. We are not carrying our burden alone, of that I am certain.
Mosiah 24:10-16 (Click the link to read the whole thing)
“Lift up your heads and be of good comfort, for I know the covenant which ye have made unto me…And I will ease the burdens which are put upon your shoulders, that even you cannot feel them upon your backs, even while you are in bondage…” **Note that the Lord didn’t take away the burden, the people remained in bondage.** “…I, the Lord God, do visit my people in their afflictions. …the burdens which were laid upon Alma and his brethren (us) were made light; yea the Lord did strengthen them that they could bear up their burdens with ease, and they did submit cheerfully and with patience to all the will of the Lord.”
We are not done carrying this burden. The Lord has not taken it from us, but He has made it easier to bear. That is one of the great miracles of the Atonement of Jesus Christ. He suffered not only for our sins and weaknesses, but for all our pain and suffering and infirmities. Alma 7:11-13 My favorite part of those verses is the wording “according to the flesh” in verses 12 and 13. He suffered according to the flesh. “Now, the Spirit knoweth all things; nevertheless the Son of God suffereth according to the flesh…” He knows. Heavenly Father knows. In their spiritual minds and bodies, they know what we suffer through. However, that the Savior could more fully understand how to help us, how to succor us, He came to Earth in a mortal body and suffered in his mortal body so that He could better understand our mortal suffering. He suffered according to the flesh. That is love. That is a miracle. We’ve been praying for a miracle and we’ve got it. We are experiencing it every day as we rely on the Atonement and love of our Savior Jesus Christ.