I'm going to warn you... I'm a little angry.
And this isn't my usual what-did-I-do-to-deserve-infertility anger. Which is worse, I think. But still. I'm pissed off.
You see, I'm due for my first IVF attempt at the beginning of December. My last appointment with my RE was on August 7th where they decided I didn't need my remaining three Lupron shots because I had responded so well and there seemed to be no evidence of my advanced endometriosis. At this appointment, they talked to us about IVF, and my husband and I decided to go for it. All of our questions were answered, we discussed the financial side, and we put a tentative schedule together with my doctor and nurse. I left feeling completely overwhelmed and anticipating the next four months as we made our way to the weeks of IVF process.
I was referred to my RE last spring after 14 months of trying (and it was a battle to get that referral -- something else that still pisses me off!). At the time, I had no idea who he was or why he was so great. Come to find he's one of the most successful in the nation and was actually on the team who achieved the first IVF pregnancy back in the 80s. This boosted my confidence in his knowledge, ability, professionalism, etc. and so I've always felt that I'm in good hands.
During my first visit, I came to know the receptionist/office manager and all of the nursing staff, as well as my doctor. I will say that my doctor is not the most personable. He has never once offered consolation, and it's clear he doesn't have a whole lot of empathy. He's smart, he knows what he's doing, and that's why he's successful -- but he's just not a warm person. He would be even more successful, in my opinion, if he could express some compassion for his patients and could make it a more personal experience... Not happening as of now, so I'm moving on. His nursing staff, though, and his office manager -- amazingly wonderful women! They are kind, they give me hugs, they make me feel good. They express their understanding of how difficult this must be. They tell my husband and I that they've been thinking of us and hoping we're doing okay. They make me feel like a human being, and I am forever grateful for that. In fact, I've been going through complete withdrawals since I haven't been in for an appointment since August. I had been in every 2-3 weeks since March, and this absence makes me feel uneasy. And really, I kind of miss them.
What I'm really pissed about, though, is how my case has been handled in the past 3-4 weeks. You see, when I left my August 7th appointment, I left with several prescriptions -- Metformin to address my PCOS, Dostinex to address my elevated Prolactin levels, and three packs of birth control to get my hormone levels back up, to keep endometriosis away, and to regulate my cycles. My instructions were to call and schedule an appointment for mapping when I started my third pack of birth control pills. So of course I figured up the day of my first pill of the third pack and put a reminder into my phone to call and schedule the appointment (as if I would forget). Right on schedule, I called. I talked to the receptionist/office manager, and she took a message. She wanted to talk to the fertility nurse to make sure she scheduled it correctly. This was a Monday. She assured me I would be called back within a couple of days.
One week passed, and I hadn't heard anything. So I called again. I reminded her of my issue and that I needed to schedule an appointment for during my third week of pills. Come to find out, my doctor and the fertility nurse will be out of town that entire week. So the receptionist was going to talk to the nurse and figure out what they should do. I never got a call back.
The following week, 8 days later, I called again. I reminded her once again what was going on and that I hadn't heard anything. She assured me that the nurse would get back to me within two days.
I was beginning to panic. Everything with IVF is on a schedule. When my husband and I decided to go forward, we decided to go forward as soon as possible. Our fertility clinic is closed during the months of January and February, so if for some reason we didn't or couldn't move forward right away, we were going to have to wait to start this entire process until the spring. We didn't want to wait. Not getting answers in regards to my mapping appointment was making me worry about the entire schedule of this process. If they couldn't map when they planned to, could they even do the IVF procedures when they planned to? Was this going to push everything back?
Wouldn't you know it, I never heard back from the nurse. I called again four days later, and this time I assertively expressed my panic and frustration. I was kind, but I was irritated. I still didn't get to talk to the nurse. Once again I was told my call would be returned.
It wasn't. So I called for a fifth time yesterday. And on my fifth attempt to talk to someone, the receptionist told me that she had been left with instructions to schedule my appointment early next week and that she would call me to do so once their schedule was finalized. She assured me that everything would be okay, nothing would be pushed back.
I have to say this gave me a sense of relief. But I'm still pissed. Why did I have call so many times? Why did I have to fight so hard for such a simple answer? Why am I not a priority? Why don't they have a fucking nurse's line???
I just want all of this to work out. I want December to be here, and I want to strip away all of the mystery of this IVF process. I want it to work. I want to be happy. And I don't want my RE's office -- the only place that can possibly help me -- to be a major source of stress and anxiety. How can I relax and feel positively about this process and this experience when I can't get the answers I need?
I love these people, and they are so good to me when I'm receiving care in their office. It's hard for me to even reconcile that I have such trouble with them when I'm not there. We'll see if I'm contacted to get this appointment made for next week. We'll see if I have to advocate for myself as usual.
Fucking call me back.
Showing posts with label PCOS. Show all posts
Showing posts with label PCOS. Show all posts
Tuesday, October 15, 2013
Friday, September 6, 2013
fyi: pcos.
My other major fertility issue is polycystic ovary syndrome, commonly referred to as PCOS. To me, PCOS is more difficult to understand than endometriosis. Bare with me as I do my best to explain it... And keep in mind that I'm doing my best to understand all of it.
I was diagnosed with PCOS at my first consultation appointment with my reproductive endocrinologist. He performed an ultrasound that revealed I had 12 cysts on one ovary and 17 on the other. Multiple cysts on the ovaries doesn't automatically reveal PCOS, though, just as an absence of cysts doesn't mean you don't have PCOS. Confusing already, huh?
See, before all of this, I had read plenty about PCOS. In fact, I had even consulted my doctors about it because I had the irregular cycles that sometimes characterize PCOS. All of my doctors dismissed this possibility because I don't fit the typical profile of a PCOS patient. Women with PCOS tend to be over weight, have excess hair growth in areas that don't normally grow hair -- upper lip, tummy, feet, etc. I don't carry extra weight, I'm not necessarily "hairy", or not by my doctors' standards. I don't have a lot of acne. It just wasn't a concern to any of them.
Ultimately, I was surprised to be diagnosed because I had been so sure that it wasn't a possibility for me. Come to find out, I did have some irregular hair patterns. Hair that grew down from my belly button shouldn't be there -- this was something that had bothered me since I was in high school, but I had several girlfriends with the same thing, so I felt fairly normal. I'm not talking a man's happy trail here... just blonde hair, but hair that was more noticeable to me than the very, very fine fuzz that covers my body. In addition, my RE gently pointed out hair growing on my feet that was also an indicator. Does this mean that if you have a little tummy hair and hair growing from your big toes that you have PCOS? Probably not. But apparently my combination of signs led to my diagnosis ... Plus all those cysts on my ovaries.
I really felt terrified that this diagnosis was going to be the end of the road for me. The only people I had ever known or heard of that had PCOS couldn't have their own children. In my mind, this meant I wasn't going to be treated. I wanted to cry right then and there, but I didn't know these people. I was alone. I just wanted to get through the appointment.
My doctor and nurse were wonderful about making sure I could see what they saw and that I understood what was going on. It continues to be a lot for me to process, but they eased my mind about the treatability of my situation. This was not the end of the road -- and it wasn't even the end of the road when we found that we needed to treat not only PCOS but endometriosis, too.
What exactly is PCOS?
Polycystic ovarian syndrom is a hormonal disorder that's characterized by the presence of actual cysts on the ovaries. There are certain indicators of PCOS -- some of which I've listed above -- that include weight gain, unusual hair growth patterns, irregular or absent menstrual cycles, acne, and inability to achieve pregnancy.
Apparently the exact cause of PCOS is unknown, but I've asked them to explain to me what they do know. There is a connection between PCOS and Type 2 Diabetes because of an insulin resistance. Many women with PCOS who are overweight may be diabetic or pre-diabetic because of this insulin resistance. Metformin, a drug prescribed to diabetic patients, has been used to treat PCOS with great results. Women who aren't classic PCOS patients may not be at risk of developing diabetes as many with PCOS are. Instead, their insulin resistance may only affect their ovaries. Weird, huh? It doesn't make sense to me either. So I'm one of those gals -- with the weird insulin resisting ovaries.
Unfortunately, there are risks that come with PCOS. There is an increased risk of heart disease, Type 2 diabetes, endometrial cancer, high blood pressure, etc.
How does PCOS affect fertility?
In my individual case, I had a total of 27 cysts on my ovaries during my ultrasound back in March. These cysts were fluid-filled follicles. My doctor explained that my body was producing plenty of hormone -- such as LH -- but that my body was putting energy into producing several follicles. None of them were going to mature into anything, and instead they were preventing ovulation. Obviously without ovulation, I couldn't become pregnant. Even if I were to ovulate every once in awhile, it would be difficult to predict timing because of the irregularity of my cycles.
My treatment:
In the couple of months leading up to our first IVF attempt, my doctor has me on a low dose of Metformin, the drug often prescribed to diabetics. My blood sugar levels were tested, and they are low to begin with. Metformin lowers blood sugar, though, so although the drug will do its magic on my cysts, it's also going to lower my blood sugar further. I was instructed to take one tablet every night with a heavy meal -- hopefully the heavy meal would help keep my blood sugar up. I felt the effects in the first couple weeks of taking Metformin because I easily got light-headed, was really tired, needed to eat frequently, etc. At my next appointment, which will be in October, I should have more information on how the Metformin is working and my PCOS status.
I was diagnosed with PCOS at my first consultation appointment with my reproductive endocrinologist. He performed an ultrasound that revealed I had 12 cysts on one ovary and 17 on the other. Multiple cysts on the ovaries doesn't automatically reveal PCOS, though, just as an absence of cysts doesn't mean you don't have PCOS. Confusing already, huh?
See, before all of this, I had read plenty about PCOS. In fact, I had even consulted my doctors about it because I had the irregular cycles that sometimes characterize PCOS. All of my doctors dismissed this possibility because I don't fit the typical profile of a PCOS patient. Women with PCOS tend to be over weight, have excess hair growth in areas that don't normally grow hair -- upper lip, tummy, feet, etc. I don't carry extra weight, I'm not necessarily "hairy", or not by my doctors' standards. I don't have a lot of acne. It just wasn't a concern to any of them.
Ultimately, I was surprised to be diagnosed because I had been so sure that it wasn't a possibility for me. Come to find out, I did have some irregular hair patterns. Hair that grew down from my belly button shouldn't be there -- this was something that had bothered me since I was in high school, but I had several girlfriends with the same thing, so I felt fairly normal. I'm not talking a man's happy trail here... just blonde hair, but hair that was more noticeable to me than the very, very fine fuzz that covers my body. In addition, my RE gently pointed out hair growing on my feet that was also an indicator. Does this mean that if you have a little tummy hair and hair growing from your big toes that you have PCOS? Probably not. But apparently my combination of signs led to my diagnosis ... Plus all those cysts on my ovaries.
I really felt terrified that this diagnosis was going to be the end of the road for me. The only people I had ever known or heard of that had PCOS couldn't have their own children. In my mind, this meant I wasn't going to be treated. I wanted to cry right then and there, but I didn't know these people. I was alone. I just wanted to get through the appointment.
My doctor and nurse were wonderful about making sure I could see what they saw and that I understood what was going on. It continues to be a lot for me to process, but they eased my mind about the treatability of my situation. This was not the end of the road -- and it wasn't even the end of the road when we found that we needed to treat not only PCOS but endometriosis, too.
What exactly is PCOS?
Polycystic ovarian syndrom is a hormonal disorder that's characterized by the presence of actual cysts on the ovaries. There are certain indicators of PCOS -- some of which I've listed above -- that include weight gain, unusual hair growth patterns, irregular or absent menstrual cycles, acne, and inability to achieve pregnancy.
Apparently the exact cause of PCOS is unknown, but I've asked them to explain to me what they do know. There is a connection between PCOS and Type 2 Diabetes because of an insulin resistance. Many women with PCOS who are overweight may be diabetic or pre-diabetic because of this insulin resistance. Metformin, a drug prescribed to diabetic patients, has been used to treat PCOS with great results. Women who aren't classic PCOS patients may not be at risk of developing diabetes as many with PCOS are. Instead, their insulin resistance may only affect their ovaries. Weird, huh? It doesn't make sense to me either. So I'm one of those gals -- with the weird insulin resisting ovaries.
Unfortunately, there are risks that come with PCOS. There is an increased risk of heart disease, Type 2 diabetes, endometrial cancer, high blood pressure, etc.
How does PCOS affect fertility?
In my individual case, I had a total of 27 cysts on my ovaries during my ultrasound back in March. These cysts were fluid-filled follicles. My doctor explained that my body was producing plenty of hormone -- such as LH -- but that my body was putting energy into producing several follicles. None of them were going to mature into anything, and instead they were preventing ovulation. Obviously without ovulation, I couldn't become pregnant. Even if I were to ovulate every once in awhile, it would be difficult to predict timing because of the irregularity of my cycles.
My treatment:
In the couple of months leading up to our first IVF attempt, my doctor has me on a low dose of Metformin, the drug often prescribed to diabetics. My blood sugar levels were tested, and they are low to begin with. Metformin lowers blood sugar, though, so although the drug will do its magic on my cysts, it's also going to lower my blood sugar further. I was instructed to take one tablet every night with a heavy meal -- hopefully the heavy meal would help keep my blood sugar up. I felt the effects in the first couple weeks of taking Metformin because I easily got light-headed, was really tired, needed to eat frequently, etc. At my next appointment, which will be in October, I should have more information on how the Metformin is working and my PCOS status.
Monday, August 26, 2013
how we got here.
Let's go way back.
Since the time of my first period, they've been really painful. Like, I hadn't felt pain like that when I got my first period. One time when I was 16, I woke up in the middle of the night with the worst cramps. I didn't even think I could walk. I eventually made it up the stairs from my room in the basement to the bathroom and threw up. Because it hurt that bad.
After years of painful but very regular periods, I got on birth control when I got to college. They assured me that it would help with cramps and other PMS symptoms. And it did. Birth control helped the pain, and although it caused other issues I wasn't too pleased with, it was nice to have a break.
Fast forward six years to age 24, and I was married and thinking about starting a family. I knew from earlier experience that I wasn't one to return right to my regular cycle after stopping the pill, so I planned to go off of birth control earlier than I might want to so that I could be sure my cycles were back to normal by the time we wanted to start trying to conceive.
As expected, my cycles weren't normal right away. I think I got my first period off of birth control like eight weeks after finishing my last pack. From there the gaps got narrower, but they still weren't regular -- not even a bit. I had six-week cycles, 40-day cycles, 28-day cycles, etc. I kept track of my cycles on a calendar, knowing it might come in handy. This lasted more than a year. At my yearly appointment, I brought up my concerns. My doctor said some people just really responded differently to hormonal changes, but he thought checking my thyroid and doing other bloodwork might be informative. So we did. And everything came back normal.
My husband and I moved to a different state, and it was time for my next yearly exam -- and this time I wanted things figured out because we were ready to start a family. She echoed what my former doctor said. Birth control probably wasn't to blame, and maybe I just thought I had had regular cycles pre-birth control but really didn't. Just to check things out, she wanted to do some bloodwork also and check my various hormone levels at specific times in my cycle. So we did. And it came back normal.
I bought ovulation strips on Amazon so that I could try to figure out if I was indeed ovulating. You know, it would be awful if I wasn't. I didn't want to waste any more time, so I started peeing on those things right away. And obsessive me became obsessed. I downloaded an app on my iPhone that would help me to keep track of my cycle. Guess what? I got a positive ovulation test strip two days in a row. I was ovulating, and I was so excited. In my mind, my doctors were proven correct. Everything was working fine, and we should start trying.
So that month -- the month I got my first positive OPK strip -- we had unprotected sex and thought wishfully about having a baby together. But I got my period a couple weeks later.
No fear, though. That was our first shot. Being the researcher and reader that I am, I got online to really figure this whole process out. I read everything. I learned about taking my basal body temperature, checking my cervical mucous, looking for signs of ovulation like mittelschmerz and egg white mucous, and charting all of the info on my phone and paper and pencil charts. I had one on my fridge. Every morning I woke up to the sound of my 6:30 alarm -- weekdays and weekends, on vacation or at home -- and took my basal body temperature. I recorded my findings on my phone immediately. I woke up and checked my cervical mucous. I even checked my cervix. I noted all of this. Then I would transfer it to the paper copy. It was such an involved process. We timed sex; we did everything perfectly.
After six months of doing everything right and timing everything right, we still weren't pregnant. That's okay, though, right? A majority of people are pregnant by then, but we will definitely be pregnant by the year mark. I didn't really believe my self-talk or the shit everyone else said to me, either, though. I scheduled an appointment with my OB/GYN because I thought maybe six months of trying might warrant some investigation. Nope. I'm fairly certain she thought I was crazy. She told me to come back at nine months if it was really worrying me. So I did, because I still wasn't pregnant then either. But I don't think she remembered telling me to come back at nine months, so it was just kind of frustrating. Then she told me to come back at the one-year mark. That's when I would be officially infertile and could be referred to someone who actually knew what the hell they were doing. But stay positive! she said as I left. Don't let this stress you out. Just enjoy the trying! It'll happen, she told me.
Then it was February -- the one-year mark -- and I still wasn't pregnant. I knew it. Something was wrong, and everyone just wasted a year of frustration and hope and disappointment. No one listened to me, and now they were going to? Because I had hit a magic number of months of being childless?
I met with another doctor in her practice, and she didn't seem to know much either. She looked at my charts and asked me some questions and said that it sounded like I was ovulating and that everything was probably fine. Had my husband been checked? she wondered. Nope. No one ever offered to check him, and oh yeah, semen analysis isn't even possible in the town we live in. So she was going to refer me to a specialist in a larger city. Did I want Dr. So-and-So or Dr. What's-His-Name? I don't know -- what the hell is the difference?
I was referred and was able to make my own consultation appointment within a couple of weeks. Luckily they had a cancelation, and I could get in two weeks later. The anticipation was killing me.
At my very first appointment with my brand new reproductive endocrinologist, I was first interviewed. They wanted medical history, they wanted family history, and they wanted to hear about what I knew about my cycle. They made copies of the 12 charts I had so meticulously kept, they took several viles of blood, and then I was able to meet the doctor in his office. He read through my information and asked me what I thought was wrong. I don't know... maybe I have low progesterone?
(Did I mention that by this time I had read every article and blog and message board on the internet that even mentioned infertility? Also, I had read three books about infertility and several on conception and pregnancy. I was definitely hypothesizing myself...)
He agreed that it could be a possibility, but he didn't think that was my only issue. We discussed my slight pain during intercourse. (I didn't get it all the time, just when circumstances were right). We discussed my mom's experience with endometriosis before conceiving me. We discussed my dad's sister's experience with endometriosis before conceiving her kids. We discussed my aunt's inability to have children because of premature ovarian failure. (And it was beginning to look like heredity wasn't working in my favor...) We discussed my irregular cycles. And then he sent me down the hall to change into a gown for a pelvic exam and transvaginal ultrasound.
I couldn't believe they were being so thorough so quickly. He started with the exam -- with nurses and resident in tow. Immediately he found the spot that caused me to wince with pain. He wasn't surprised. And look at this, and look at that. All signs of what he thought might be endometriosis. Next, he did the ultrasound and immediately found a total of 27 cysts on my ovaries. I wanted to cry right then and there. The term poly-cystic ovaries was thrown around, and then I really wanted to cry. I knew people who didn't have children because of PCOS, and here I was.
They sat me up, and I asked questions. They got out pictures of endometriosis. They explained the cysts. I would be scheduled for surgery in two weeks to investigate the presumed endometriosis and to check on the cysts. If endometriosis was found, they would remove it with a laser. If the cysts were too big, they could be drained. After surgery, a treatment plan would be developed and pursued.
I still felt very emotional, and so I asked if this was going to be the end of the road for me. They smiled and said no -- this was all very mild compared to what they see on a daily basis, and things were very hopeful for me. This could all be treated.
YES. I was on a high like I hadn't experienced in a long time. Not only did I have answers, but they were treatable answers, and I would have my baby. I would have to be patient and endure a little bit, but it would be worth it.
My surgery was exactly two weeks later. My husband went with me and was there to speak with my doctor when it was over. My husband recorded my doctor's comments on his phone so that I could hear exactly what they found.
I did indeed have endometriosis. I also had an endometrioma (bad news). There was endometriosis on my abdominal walls, my uterine walls, my bladder, and my ureters. It was bad. It was Stage III Advanced, and my doctor couldn't recall ever seeing such an advanced case on someone my age. 26 years old. After he reviewed all of the photos and information, he would determine a treatment plan and would be able to discuss it with me at my post-op appointment. That's all the information I had for two weeks.
At my post-op appointment, he reiterated the extent of my endometriosis. He was shocked I wasn't in more severe pain for the past several years. He couldn't believe it was so out of control because I was so young. (None of this shock and awe was helping my psyche at the moment...) My cysts were small and nothing had to be done with them during the surgery. They decided to start me on six rounds of depo Lupron the following month to further address the endometriosis. I would receive one injection of the drug in the rear every four weeks, and as a GnRH agonist, it would shut my reproductive system down and allow it all to rest. Microscopic cells of endometriosis that remained in my uterine walls (causing my uterus to be "spongy") that could not be removed with the laser during surgery needed to be taken care of, and the Lupron would eliminate them. I was nervous about these shots because they would send me into a temporary menopause -- and at a very accelerated rate. For six months I would be without estrogen, which could in turn reduce my bone density. Side effects such as hot flashes, headaches, mood swings, depression, and insomnia were to be expected.
I got my first shot in May 2013 and experienced very few side effects. I got my second shot in June 2013, and the hot flashes began. They were miserable, and the midwest heat and humidity didn't help a thing. In the meantime, my husband went in for a semen analysis, you know, just to make sure everything with him was okay and to confirm that we only needed to focus on my issues. Well, he ended up with a severely low sperm count, poor morphology (3%), and low motility. We were both devastated because we felt our chances of conceiving were slashed again. He went in for further bloodwork and a karyotype to see if we could get some answers. Everything came back normal, and I was reminded of how frustrating "normal" can be when you know it's not. "Normal" just meant that we wouldn't get any real answers, and there was nothing to treat. No way to make it better.
My doctor offered to refer my husband to a urologist who specializes in male fertility and partners with him on IVF. It was our only shot at figuring this thing out. We received a copy of the referral letter in the mail, and it was the first time I had seen or heard my doctor say anything about IVF. And he was indeed saying that IVF was his recommendation for us if we wanted to conceive. That was our answer. This was worst-case scenario material only two months before, and here we were. Reality. IVF.
At my appointment to get my third Lupron shot, I was met with information I hadn't expected. At next month's appointment -- the appointment that would normally be reserved for my fourth shot -- we would have a consultation with the doctor. My husband should plan to be there, and I could expect to have another pelvic exam. If my husband and I decided that we were interested in moving forward with IVF, the doctor would check me out and consider forgoing the final three shots in pursuit of IVF. From there I would be sent home with drugs to treat my cysts, birth control to keep my system dormant and to reintroduce estrogen levels, and all of my vitamins. We would even discuss a schedule of when to do IVF.
This was big news, and it was a lot to wrap my mind around. I thought I had three more months on these shots and several months even after that before we'd have to make a decision.
After talking with my husband, we decided IVF was a path we wanted to take. At least once. Because it's our only option, we feel we owe it to ourselves and our efforts to give it a shot.
We arrived at my fourth appointment armed with dozens of questions we needed answered. We knew that we could be leaving there officially beginning the IVF process, or we could end up just continuing the shots based on what my doctor found. My RE began the consultation by answering all of our questions and explaining the process and the timeline. He explained that a pelvic exam would give him a good idea of how my body has responded to the Lupron, the condition of my uterus, and my current pain level. The exam revealed that I was no longer experiencing any pain, he felt my uterus was firm and healthy, and he was impressed with how well I had responded to the injections. Three months of grueling hot flashes (this shit was no joke) paid off, and really, I had been so lucky to not experience some of the more severe side effects.
SO. We could move forward with IVF if that's what we wanted to do. He explained that the success rate is 50/50; it's the national average. He explained that there's no way of knowing what issues may come up until we're in the middle of it. He explained the travel schedule, the time commitment, the time management involved, and the procedures. I had read about all of this before. I knew all of these answers.
But I was completely overwhelmed.
He stepped out of the room so that I could get dressed and we could meet with his fertility nurse to go over details. As the door shut behind him, I buried my face in my husband's shirt and cried.
This was wonderful news. We could move forward. Maybe we would be pregnant in four months time. This was awful news. We can't have our own children naturally. The future of our family will ride on this one procedure that is just as likely not to work as it is to work.
Fuck.
I composed myself and we gathered our things and made our way to her office. She was very good with us and explained the financial side, the scheduling, the time frame, etc. I felt informed, and I felt good about the decision we were making.
I was given three prescriptions to take for the next three months: birth control, Metformin to help treat my cysts, and Dostanex to treat elevated Prolactin levels. I would continue taking vitamin B6, fish oil, prenatals, and calcium supplements twice daily. And I would continue taking my prescription vitamin D weekly. I was to continue drinking lots of water and asked to consider gaining five pounds or so because "it couldn't hurt." I committed myself to abstaining from alcohol, exercising daily, and trying to eat right while adding some calories to my diet. I was told to come back in October 2013 to be checked over and to do a "trial run" of the egg retrieval/implantation process so that they could measure the dimensions of my uterus (more on why later). From there, they would schedule my tentative egg retrieval day -- sometime in early December -- and determine when to start me on my IVF drugs. The fertility nurse gave me a hug, asked me to try to stay positive, and sent us on our way.
And we walked out the door...
The process now begins.
Since the time of my first period, they've been really painful. Like, I hadn't felt pain like that when I got my first period. One time when I was 16, I woke up in the middle of the night with the worst cramps. I didn't even think I could walk. I eventually made it up the stairs from my room in the basement to the bathroom and threw up. Because it hurt that bad.
After years of painful but very regular periods, I got on birth control when I got to college. They assured me that it would help with cramps and other PMS symptoms. And it did. Birth control helped the pain, and although it caused other issues I wasn't too pleased with, it was nice to have a break.
Fast forward six years to age 24, and I was married and thinking about starting a family. I knew from earlier experience that I wasn't one to return right to my regular cycle after stopping the pill, so I planned to go off of birth control earlier than I might want to so that I could be sure my cycles were back to normal by the time we wanted to start trying to conceive.
As expected, my cycles weren't normal right away. I think I got my first period off of birth control like eight weeks after finishing my last pack. From there the gaps got narrower, but they still weren't regular -- not even a bit. I had six-week cycles, 40-day cycles, 28-day cycles, etc. I kept track of my cycles on a calendar, knowing it might come in handy. This lasted more than a year. At my yearly appointment, I brought up my concerns. My doctor said some people just really responded differently to hormonal changes, but he thought checking my thyroid and doing other bloodwork might be informative. So we did. And everything came back normal.
My husband and I moved to a different state, and it was time for my next yearly exam -- and this time I wanted things figured out because we were ready to start a family. She echoed what my former doctor said. Birth control probably wasn't to blame, and maybe I just thought I had had regular cycles pre-birth control but really didn't. Just to check things out, she wanted to do some bloodwork also and check my various hormone levels at specific times in my cycle. So we did. And it came back normal.
I bought ovulation strips on Amazon so that I could try to figure out if I was indeed ovulating. You know, it would be awful if I wasn't. I didn't want to waste any more time, so I started peeing on those things right away. And obsessive me became obsessed. I downloaded an app on my iPhone that would help me to keep track of my cycle. Guess what? I got a positive ovulation test strip two days in a row. I was ovulating, and I was so excited. In my mind, my doctors were proven correct. Everything was working fine, and we should start trying.
So that month -- the month I got my first positive OPK strip -- we had unprotected sex and thought wishfully about having a baby together. But I got my period a couple weeks later.
No fear, though. That was our first shot. Being the researcher and reader that I am, I got online to really figure this whole process out. I read everything. I learned about taking my basal body temperature, checking my cervical mucous, looking for signs of ovulation like mittelschmerz and egg white mucous, and charting all of the info on my phone and paper and pencil charts. I had one on my fridge. Every morning I woke up to the sound of my 6:30 alarm -- weekdays and weekends, on vacation or at home -- and took my basal body temperature. I recorded my findings on my phone immediately. I woke up and checked my cervical mucous. I even checked my cervix. I noted all of this. Then I would transfer it to the paper copy. It was such an involved process. We timed sex; we did everything perfectly.
After six months of doing everything right and timing everything right, we still weren't pregnant. That's okay, though, right? A majority of people are pregnant by then, but we will definitely be pregnant by the year mark. I didn't really believe my self-talk or the shit everyone else said to me, either, though. I scheduled an appointment with my OB/GYN because I thought maybe six months of trying might warrant some investigation. Nope. I'm fairly certain she thought I was crazy. She told me to come back at nine months if it was really worrying me. So I did, because I still wasn't pregnant then either. But I don't think she remembered telling me to come back at nine months, so it was just kind of frustrating. Then she told me to come back at the one-year mark. That's when I would be officially infertile and could be referred to someone who actually knew what the hell they were doing. But stay positive! she said as I left. Don't let this stress you out. Just enjoy the trying! It'll happen, she told me.
Then it was February -- the one-year mark -- and I still wasn't pregnant. I knew it. Something was wrong, and everyone just wasted a year of frustration and hope and disappointment. No one listened to me, and now they were going to? Because I had hit a magic number of months of being childless?
I met with another doctor in her practice, and she didn't seem to know much either. She looked at my charts and asked me some questions and said that it sounded like I was ovulating and that everything was probably fine. Had my husband been checked? she wondered. Nope. No one ever offered to check him, and oh yeah, semen analysis isn't even possible in the town we live in. So she was going to refer me to a specialist in a larger city. Did I want Dr. So-and-So or Dr. What's-His-Name? I don't know -- what the hell is the difference?
I was referred and was able to make my own consultation appointment within a couple of weeks. Luckily they had a cancelation, and I could get in two weeks later. The anticipation was killing me.
At my very first appointment with my brand new reproductive endocrinologist, I was first interviewed. They wanted medical history, they wanted family history, and they wanted to hear about what I knew about my cycle. They made copies of the 12 charts I had so meticulously kept, they took several viles of blood, and then I was able to meet the doctor in his office. He read through my information and asked me what I thought was wrong. I don't know... maybe I have low progesterone?
(Did I mention that by this time I had read every article and blog and message board on the internet that even mentioned infertility? Also, I had read three books about infertility and several on conception and pregnancy. I was definitely hypothesizing myself...)
He agreed that it could be a possibility, but he didn't think that was my only issue. We discussed my slight pain during intercourse. (I didn't get it all the time, just when circumstances were right). We discussed my mom's experience with endometriosis before conceiving me. We discussed my dad's sister's experience with endometriosis before conceiving her kids. We discussed my aunt's inability to have children because of premature ovarian failure. (And it was beginning to look like heredity wasn't working in my favor...) We discussed my irregular cycles. And then he sent me down the hall to change into a gown for a pelvic exam and transvaginal ultrasound.
I couldn't believe they were being so thorough so quickly. He started with the exam -- with nurses and resident in tow. Immediately he found the spot that caused me to wince with pain. He wasn't surprised. And look at this, and look at that. All signs of what he thought might be endometriosis. Next, he did the ultrasound and immediately found a total of 27 cysts on my ovaries. I wanted to cry right then and there. The term poly-cystic ovaries was thrown around, and then I really wanted to cry. I knew people who didn't have children because of PCOS, and here I was.
They sat me up, and I asked questions. They got out pictures of endometriosis. They explained the cysts. I would be scheduled for surgery in two weeks to investigate the presumed endometriosis and to check on the cysts. If endometriosis was found, they would remove it with a laser. If the cysts were too big, they could be drained. After surgery, a treatment plan would be developed and pursued.
I still felt very emotional, and so I asked if this was going to be the end of the road for me. They smiled and said no -- this was all very mild compared to what they see on a daily basis, and things were very hopeful for me. This could all be treated.
YES. I was on a high like I hadn't experienced in a long time. Not only did I have answers, but they were treatable answers, and I would have my baby. I would have to be patient and endure a little bit, but it would be worth it.
My surgery was exactly two weeks later. My husband went with me and was there to speak with my doctor when it was over. My husband recorded my doctor's comments on his phone so that I could hear exactly what they found.
I did indeed have endometriosis. I also had an endometrioma (bad news). There was endometriosis on my abdominal walls, my uterine walls, my bladder, and my ureters. It was bad. It was Stage III Advanced, and my doctor couldn't recall ever seeing such an advanced case on someone my age. 26 years old. After he reviewed all of the photos and information, he would determine a treatment plan and would be able to discuss it with me at my post-op appointment. That's all the information I had for two weeks.
At my post-op appointment, he reiterated the extent of my endometriosis. He was shocked I wasn't in more severe pain for the past several years. He couldn't believe it was so out of control because I was so young. (None of this shock and awe was helping my psyche at the moment...) My cysts were small and nothing had to be done with them during the surgery. They decided to start me on six rounds of depo Lupron the following month to further address the endometriosis. I would receive one injection of the drug in the rear every four weeks, and as a GnRH agonist, it would shut my reproductive system down and allow it all to rest. Microscopic cells of endometriosis that remained in my uterine walls (causing my uterus to be "spongy") that could not be removed with the laser during surgery needed to be taken care of, and the Lupron would eliminate them. I was nervous about these shots because they would send me into a temporary menopause -- and at a very accelerated rate. For six months I would be without estrogen, which could in turn reduce my bone density. Side effects such as hot flashes, headaches, mood swings, depression, and insomnia were to be expected.
I got my first shot in May 2013 and experienced very few side effects. I got my second shot in June 2013, and the hot flashes began. They were miserable, and the midwest heat and humidity didn't help a thing. In the meantime, my husband went in for a semen analysis, you know, just to make sure everything with him was okay and to confirm that we only needed to focus on my issues. Well, he ended up with a severely low sperm count, poor morphology (3%), and low motility. We were both devastated because we felt our chances of conceiving were slashed again. He went in for further bloodwork and a karyotype to see if we could get some answers. Everything came back normal, and I was reminded of how frustrating "normal" can be when you know it's not. "Normal" just meant that we wouldn't get any real answers, and there was nothing to treat. No way to make it better.
My doctor offered to refer my husband to a urologist who specializes in male fertility and partners with him on IVF. It was our only shot at figuring this thing out. We received a copy of the referral letter in the mail, and it was the first time I had seen or heard my doctor say anything about IVF. And he was indeed saying that IVF was his recommendation for us if we wanted to conceive. That was our answer. This was worst-case scenario material only two months before, and here we were. Reality. IVF.
At my appointment to get my third Lupron shot, I was met with information I hadn't expected. At next month's appointment -- the appointment that would normally be reserved for my fourth shot -- we would have a consultation with the doctor. My husband should plan to be there, and I could expect to have another pelvic exam. If my husband and I decided that we were interested in moving forward with IVF, the doctor would check me out and consider forgoing the final three shots in pursuit of IVF. From there I would be sent home with drugs to treat my cysts, birth control to keep my system dormant and to reintroduce estrogen levels, and all of my vitamins. We would even discuss a schedule of when to do IVF.
This was big news, and it was a lot to wrap my mind around. I thought I had three more months on these shots and several months even after that before we'd have to make a decision.
After talking with my husband, we decided IVF was a path we wanted to take. At least once. Because it's our only option, we feel we owe it to ourselves and our efforts to give it a shot.
We arrived at my fourth appointment armed with dozens of questions we needed answered. We knew that we could be leaving there officially beginning the IVF process, or we could end up just continuing the shots based on what my doctor found. My RE began the consultation by answering all of our questions and explaining the process and the timeline. He explained that a pelvic exam would give him a good idea of how my body has responded to the Lupron, the condition of my uterus, and my current pain level. The exam revealed that I was no longer experiencing any pain, he felt my uterus was firm and healthy, and he was impressed with how well I had responded to the injections. Three months of grueling hot flashes (this shit was no joke) paid off, and really, I had been so lucky to not experience some of the more severe side effects.
SO. We could move forward with IVF if that's what we wanted to do. He explained that the success rate is 50/50; it's the national average. He explained that there's no way of knowing what issues may come up until we're in the middle of it. He explained the travel schedule, the time commitment, the time management involved, and the procedures. I had read about all of this before. I knew all of these answers.
But I was completely overwhelmed.
He stepped out of the room so that I could get dressed and we could meet with his fertility nurse to go over details. As the door shut behind him, I buried my face in my husband's shirt and cried.
This was wonderful news. We could move forward. Maybe we would be pregnant in four months time. This was awful news. We can't have our own children naturally. The future of our family will ride on this one procedure that is just as likely not to work as it is to work.
Fuck.
I composed myself and we gathered our things and made our way to her office. She was very good with us and explained the financial side, the scheduling, the time frame, etc. I felt informed, and I felt good about the decision we were making.
I was given three prescriptions to take for the next three months: birth control, Metformin to help treat my cysts, and Dostanex to treat elevated Prolactin levels. I would continue taking vitamin B6, fish oil, prenatals, and calcium supplements twice daily. And I would continue taking my prescription vitamin D weekly. I was to continue drinking lots of water and asked to consider gaining five pounds or so because "it couldn't hurt." I committed myself to abstaining from alcohol, exercising daily, and trying to eat right while adding some calories to my diet. I was told to come back in October 2013 to be checked over and to do a "trial run" of the egg retrieval/implantation process so that they could measure the dimensions of my uterus (more on why later). From there, they would schedule my tentative egg retrieval day -- sometime in early December -- and determine when to start me on my IVF drugs. The fertility nurse gave me a hug, asked me to try to stay positive, and sent us on our way.
And we walked out the door...
The process now begins.
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