How We Arrived at the Specialist

           Sept. 18, 2018

          Today was our first appointment with Seattle Reproductive Medicine (SRM). After trying to conceive for the last 2.5 years our options were finally at an end. Besides, there is only so much frustration and disappointment you can take before it’s time to move to the next step. The first year was trying all the natural ways. Sex roughly the middle of the cycle. Maybe trying different positions. 

            At a year you can now be labeled as having an issue with infertility. It’s one of those things where everyone knows it can and does happen, but surely it won’t happen to me. Hitting that year mark was a bit of a punch to the gut. There was still quite a bit to try. Nothing hopeless about it. We moved into testing to see what issues may be present.

            Both of us received blood work to check hormone levels. All good. I received a couple different transvaginal ultrasounds over several months. First one revealed a cyst on one ovary. Nothing to worry about. Second was a follow up to make sure the cyst had resolved, which it had. No pain and no consistent cysts meant no cause for concern. Tom performed a semen analysis and, yet again, all good. My final test was an Hysterosalpingogram (HSG) to test Tubal Infertility. This test involves injecting dye into the uterine cavity while monitoring imaging. The dye is watched as it fills the uterus, fallopian tubes, and releases into the abdominal cavity. This test is used to determine if a tube may be blocked, constricted, etc. Mine revealed very slight dilation of the left tube, but at this point no concern from any of the doctors or parties involved. Likely just my anatomy.

            From there we spent another year and a half trying ovulation kits, timed intercourse, and a few rounds of fertility drugs. The continual disappointment and despair cannot be described to someone who has not suffered through it. You see parents with their children and have to stop yourself from sobbing in public. On other days you have to stop yourself from cursing them out. Your infertility is not their fault. You can’t stand to be around your friends that have children. At the same time, it’s hard to be around friends that don’t want kids. And the friends who simply don’t have kids yet? They just don’t understand. You pray they never have to. 

            People want to constantly offer advice and encouragement. It’s the same as hearing someone has cancer. You want to offer comfort and something encouraging, but, let’s be honest, what do you say? Even someone who has been through infertility has not had the same journey. You get so many “just don’t stress”, “don’t think about it and it will happen”, “God has a plan for you”, “it will happen when it happens”, “one way or another you will have a child”. None of these are helpful or make me feel better. People also then love to share stories or experiences. Very few seem to offer “hey I’m so sorry. Let me know if you need/I can do anything. I'm here for you”. Done. Nothing more.

            The world gets darker and more hopeless the longer your heart is denied its desire. You feel like you should be able to handle the feelings. Most are irrational after all. I didn’t want to talk to anyone. Didn’t want to hang out with our friends. It was even hard for Tom and I to comfort one another because what do you say?? December 2017, I had ankle surgery and things got even worse once I was unable to get around.

            I became depressed. Had anxiety. There was little pleasure in going out or doing activities. I pitied myself, slept in, and continued to grow angrier at anyone who was pregnant or had babies. Totally unfair I know. But you cannot help yourself. I was making myself and Tommy miserable. I knew I needed to seek help before things became any worse as clearly this journey was not over.

            I found a wonderful counselor. Although she doesn’t have specific experience with infertility herself she has her own birthing trials and is a great fit for my personality. She is a straight-forward, no bull, state the obvious miracle for me. Truly she is. At that moment in my life, she was exactly who I needed to find. I am so glad I did. After several counseling sessions over a few months, I saw improvement in my attitude, my coping, and my outlook for the future. I am by no means cured or perfect. I still have plenty of down days and moments. But thanks to her they are now days and moments rather than a constant, crushing feeling. I do not see her currently, but it is a huge relief to me knowing that she is there should I need more help.

            I also found counseling comforting in attempting to help and comfort Tom. I don’t know if it’s because he doesn’t receive the same physical reminder each month that I do, but the level of grief for him is different and seems to be trailing behind mine. Make no mistake he grieves every bit as much as I do. The husband hears the disappointment second hand. In our case, this led to Tom still grieving, but between lacking periods and having work as a great distraction he trails behind me a couple months in the stages. If that makes sense. I’ve watched him hit the different points I reached (sadness, denial, hate) after I had entered and moved beyond them. The counseling helped me manage these feelings in myself and notice them when they have begun to arise in him. It allows us to immediately open up a dialogue and reflect on what my therapist said. I think it will also make it easier if he ever gets really bad and would benefit from a visit to a counselor of his own.

            As the counseling ended we moved on to the next stage of our journey. My gynecologist said the next things to try were fertility drugs. Clomid and Letrazole are the current choices they offer. They recommended three months on Clomid and then three on Letrazole. Some women respond to one drug better than the other. Of course, the moment you mention you are starting these drugs the horror stories begin. Women talking about how the drugs made them crazy or made them feel ill. I had no idea what to expect.

            One of my biggest comforts lately has been a lady I met through our new church. What a support group church has been! Support and distraction. (but perhaps more on that journey later) She said that clomid made her crazy. I've been going to her for information and stories about most of the aspects of this journey. I have always had regular cycles. Roughly 28 days. Period for about 4. Some pre-menstrual symptoms but nothing near what I’ve heard from other women. Clomid was awesome. Not in the sense that it worked but it made my cycle even more regular and reduced menstrual symptoms. Pretty awesome in my opinion! Again, other than the fact it didn’t work.

            Thankfully the fertility drugs were not some huge struggle. Call or message the doctor the first day of your period, they fill a prescription, you take the drugs on certain days of the cycle, use an ovulation kit, sex, and then wait. If pregnancy does not occur, you call them up again, let them know that you detected ovulation (if you did) and they refill the prescription and away you go again. I detected ovulation each month on Clomid and did not suffer any side effects.

            Have I mentioned yet that sex and trying for the baby rapidly become less fun? Anyway, Clomid did not work so we proceeded to Letrazole. A drug I will never take again for the rest of my life. Throughout the first month, I felt off and had random stomach aches. Not fun. Then my period began about 5 days early. I messaged the doctor but she said it all still seemed within normal range and to try another month.

            The second month was a nightmare. To be fair my terrible month was not solely the result of the drug. While the Letrazole continued to cause me to feel awful, the second month also resulted in no detection of ovulation and my period arrived 10 days early. About that time, we were to be on our anniversary trip in Maui and I came down with a case of pouchitis. A condition that will occur from time to time as a result of all my past surgeries and the Ulcerative Colitis that caused them. We made it to Maui, but I was put on antibiotics that were sensitive to the sunshine, a restricted diet, and dealing with my period. Fun, fun time to be in Hawaii. We made the most of it, but it was one of those moments in life when everything seems to come crashing down at once. We weren’t pregnant (again), the drug had messed everything up, I was sick, and I couldn’t shake the feeling that God hated us. Not a good place to be.

            We got back from Hawaii and I was fed up. I didn’t even want to bother with moving forward to see the specialists. Barring another round of Letrazole (which no way in hell), specialists were the next step. I wanted to come to a dead halt. I was tired and frustrated and knew moving forward meant more heartache and a lot more money. I wanted to wait until the new year at least. Tom convinced me that having a consultation with SRM would be fine. Just to go and gather information. No pressure to proceed further. No money wasted. I agreed.

            So here we arrived at our first appointment. I had recovered from my breakdown in July and was ready to move forward. We were told the meeting could be anywhere from 1-3 hours and had scheduled the appointment for 2:00 to miss as little work as possible. 1 hour was set aside to meet with the doctor for a new patient consultation. The appointment would go longer if the doctor recommended and we agreed to any testing that day. Then there would be the option to meet with a nurse and finance. Tom and I arrived early with our packets of paperwork ready. I have not filled out that much and that detailed of paperwork in a long time. As has been typical of this experience thus far, the man’s side was significantly easier and less involved. Oh, to be a dude!

            They were a bit late getting us in to see the doctor, but she was absolutely wonderful. In the sense that she was knowledgeable, experienced, and, as an added bonus, friendly. She spent a solid hour going over our medical history, our attempts thus far, answering our questions, and discussing plans moving forward. Knowing my history of Ulcerative Colitis and the subsequent surgeries to cure me, I had always been concerned that would play a factor. Until this point no one had really focused on that as a possible reason for our difficulties. Dr. Klein zeroed in on that right away. She said that scar tissue in the abdomen can affect ovarian, fallopian tube, or uterine function. There is no reason initially to assume anything might be wrong so she did not wish us to think our previous doctors had failed us. She would have taken all the same steps.

Now, however, several things combined to make her believe there is a very good chance that scar tissue is our issue. Likely the scar tissue is affecting the ability of the eggs to meet up with the sperm in some way or another. Of course, there is no way to prove this it’s simply a theory. Great, I love theories! She said that between my history, the length of time we’ve been unsuccessful, and the abnormalities on my HSG test it’s a good bet there is something amiss. Sadly, I am not a candidate for removal of the scar tissue. She said that poses more risks than benefits. It also means that Intrauterine Insemination (IUI), commonly referred to as the turkey baster method, is not likely to be effective. So why bother wasting that money. She feels that we would be very good candidates for In-Vitro Fertilization (IVF). Based on other scans and images she believes there is nothing wrong with the organs themselves. Uterus is a good shape, size and in a good position. Lining looks good. The ovaries look healthy. We are young and healthy individuals. I have been detecting ovulation and having regular cycles. According to her there is no reason IVF would not be successful.

So the choice was extended and we jumped upon it immediately. Its hard not to when you have waited for so long and the doctor seems to optimistic. We began making plans to move forwards and do retrieval as soon as possible. As in the next month, October. This was possible if we decided against a Pre-Implantation Genetic Screening (PGS) which she does not feel we need. We agreed and she suggested an ultrasound then and there to check the health of the ovaries, uterus, and the follicle supply.

We proceeded into an exam room and Dr. Klein joined us. She performed the transvaginal ultrasound while continuing to answer questions. I could feel my blood pressure rising. It seemed so straightforward yet I knew there is SO much to the process. She measured the uterus and its lining. All good. She located and measured the ovaries. All good. No cysts like I’ve had previously. She then counted the follicles on each ovary to get an idea of egg supply. I have no idea how she accomplished this and did so quickly. It all looked like black spots to me. She seemed satisfied. At that point you kind of nod and just say sure, great! The only thing of note was some fluid floating around the abdomen. She said that everyone has some amount of fluid and she would not be surprised to find slightly more in mine given my history. So, all good and all clear.

That was the end of our time with Dr. Klein. We would get our blood drawn before leaving, decide if we wanted genetic screening, different from PGS, meet with our nurse, and the financial counselor. Here is where the appointment went sideways and started to become frustrating and overwhelming. The blood draw was difficult as always. I have small veins and am not an easy stick. Still, the MA that worked with us was less than friendly and certainly not the most competent person I’ve ever encountered. That seems rude I know, but this is your job! You have trained for this and you are the person the patients are going to see often. Not to mention they are seeing you while dealing with uncomfortable procedures. Make them feel more comfortable!

She took forever to decide on a vein, picked an uncomfortable spot in the end, and the vein just drizzled blood. It took forever to fill the four vials! She kept going on and on about wanting to get a good vein so she wouldn’t have to poke me more than once. I appreciate that, but it wasn’t a great vein. Still we got blood. Tom’s was fast and easy of course. The nurse came over during this time and introduced herself and stood there waiting. It was all beginning to feel rushed. Soon enough we would find out the MA’s were leaving for the night. Just as she finished up drawing the blood, got me bandaged, and I stood up to follow Tom and the nurse the gal says “uh oh, oh no”. Great. Perfect. Just what you want to hear. I look over to see her holding the lid of a box with an empty vial. One of the many vials she was supposed to fill. The vial for the genetic screening. She had forgotten it. She began apologizing and stammering and you could tell she was flustered. The nurse asked what needed to be done, but the MA said she had made the mistake so she would catch us after the nurse’s time because that’s where we were supposed to be.

We went into a conference room with Becca, our new contact person. She, we were informed, would be our nurse through the whole process. All our questions and concerns were to be directed to her. She began by pulling out the calendar. This is a calendar for the month of egg retrieval. It begins day one of your period and then is pretty set with blood draws, tests, and injections up to the day of retrieval, somewhere mid-cycle. We went through the calendar asking questions and working to understand the multitude of tests. It requires a lot of flexibility to come in and receive ultrasounds and blood draws to check the progression of your ovaries. The goal is to stimulate development of multiple follicles resulting in the retrieval of numerous mature eggs. Gonadotropins and a few other medications are used for stimulation. This would required injecting yourself at home. I think I stared at her for a solid minute before nodding and saying “ok, let’s continue”. Injecting yourself!? I am not afraid of needles or the medical field, but I don’t particularly enjoy the idea of giving myself shots. She said there is a training class you must take for that first. Joy.

As we moved from the calendar into all the different forms and steps that would be required in the next two weeks before my cycle began, the MA knocked and stuck her head in the door. She was leaving and still needed to do the second blood draw. You could tell Becca was frustrated because she couldn’t continue without both Tom and myself, but told me to go because the MA’s were leaving for the night.

Leaving! I could not believe it. We also ended up being unable to meet with a financial counselor because they had all left for the evening. Why schedule us for 2:00 if we won’t be able to have a full appointment!? Needless to say we were both frustrated that no one had mentioned this could be an issue. We both could have made an earlier appointment.

Anyway, I followed the MA back to the blood draw chair. She poked the vein she had initially ignored and what do you know? It had no troubles and blood flowed quickly to fill the vial. Done and done. She labeled the vial in front of me and sent me back to Becca.

Becca continued by explaining all the different forms she would be sending to us that we need to review, sign, and return. There were also going to be informative videos that must be watched before proceeding. The injection training would need to be completed and a follow up visit with Dr. Klein must happen to confirm that plan to move forward. All within two weeks since we had decided to retrieve in October. A whole new world to explore briefly explained in half an hour. She was available for any questions.

By this point I felt so rushed and incomplete. We couldn’t meet with finance. A huge part in this whole journey! They would send us an estimate. Decisions such as whether to perform a PGS had been decided since there was not room in the schedule in October. This meant we would do no PGS. But did I really want a PGS? How much would this cost? I knew different options were available but what are they? How do we research that? So many things to simply trust the doctors about.

To make matters worse, when we returned to the front desk to schedule our follow-up with Dr. Klein she had nothing available in two weeks. In fact, she was out of the office a couple of the days. The only appointment was outside our preferred time window and only a week and a half out. We took it and asked them to call if anything else came up. They gave us our cards with the information required to obtain our genetic screening results since the test is performed through a different company.

Out we walked with our heads spinning. We got into the car and I told Tom not to speak for at least 10 minutes. I need to internalize and process. Something I do not normally do, certainly do not request, as an extrovert. When we did discuss, we just reassured one another that the doctors know what they are doing and it’s all what we want. I am hoping that as the process moves forward and I receive the information from Becca we feel more comfortable and confident.