Yes I’ve been absent again and while it seems like a bad habit, I actually have exciting news and reason for my delay. For pretty much September and October and off and on during November and December, I’ve basically been living on my couch with horrible nausea, intense sciatic pain in my booty and legs, back pain and headaches that could knock out a horse. I’d say the middle of December is the first I started to consistently felt “normal” again. And I’m actually thrilled about this!
No I’m not nuts, I’m pregnant! While I have had the distinct pleasure of helping raise my stepson since he was about 10 years old, this will be my first baby. I have loved this little one for years and years and years. I (and my husband) have prayed that God would gift me with a child of my own and have wanted to be a mother since I was a child myself. The journey to this little precious miracle has not been an easy one for my husband and I but it was well worth it.
Which brings me to a topic I have wanted to discuss on this blog for a long time. Its one of those topics that up until very recently “you’re not supposed to talk about” and that many have suffered in silence over. I’m grateful that so many are coming forward publicly and talking about it and I for one am grateful to the men and women who have shared their personal stories with me as my husband and I travelled this painful road. But to be completely honest and vulnerable, I haven’t had the courage or the strength to address the topic before now. And the story and conversation I share and invite here are still raw for me. But I think the more we share, the more we make it open, the less the stigma, and frankly the shame, and hopefully greater sensitivity.
Fertility. Or rather the lack of it.
With service reminders for birth control and shows like TLC’s Unexpected featuring three teen pregnancy couples, getting pregnant seems to be a no brainer. Hearing story after story of women who found out they were pregnant, weren’t trying or didn’t want a child only reinforces that getting pregnant is easy. But it really isn’t, which makes things like teen pregnancy and people getting pregnant when they don’t want children mind boggling.
(Please note I am going to be talking about pregnancy, fertility, biology and similar topics in a rather forward, raw and open way. I will be talking very openly about our experiences and our process and struggle with infertility. If you prefer to shift to another post, no offense taken. Just want to give you a heads up now. And for the record I do have permission to share from my husband since its equally his story as mine.)
Really. It is not easy. Even with 2 perfectly functioning adults, there is only a 20% chance of getting pregnant in any given month. Umm, really, that’s a 80% chance you won’t. Now mind you, 85% of healthy women under 35 years old having regular unprotected sex will get pregnant within a year. But that leaves 15% who won’t and those over 35 years old have even less successful odds. So let’s think about that. The US population is about 323 million. For easy sake, let us assume they are all adults (yes I know they aren’t) and that half are women or about 161.5 million women. 15% of that is 24,225,000 women!!! That’s a lot of women! Statistics here in the US suggest that 1 in 8 couples will have trouble getting pregnant. To put that in perspective, that’s the same odds as a women in the general population getting breast cancer and we talk about breast cancer all the time! In the UK the rate is higher at 1 in 7 couples. And that’s just conception. The struggles of carrying a child to term are just as profound on fertility. I personally know many women who have suffered miscarriages, one I love dearly went through 5 before finally bringing a baby to full term and another lost two children – one at a month and one at 2 years old – before she bore a health child.
Fertility or rather infertility is a real challenge. It effects millions of couples. There are significant financial costs involved in mitigating infertility issues – sometimes cost prohibitive and sometimes spent with no baby at the end of a highly emotional and financially costly journey. There are so many personal stories of infertility but what I found was until you, yourself, starting experiencing infertility AND are willing to be open about your struggles, then and really only then do you start to hear the stories of others just like you. But I want to share my husband’s and my story to share a personal perspective, to give insight in to some of the emotional struggles, some of the pitfalls, to share to create exposure and awareness, to give those who have never struggled with infertility something to consider and to perhaps give hope to those still struggling.
We casually throw fertility around in our society. I can’t speak for other countries but its a natural part of conversation here and almost always centers around women. Tell me if you have been asked directly, asked any of these questions or if they just sound familiar:
To a married woman: “So when are you and hubby gonna start a family?” or “Any news on the baby front?” or “You know you two have been married for (insert years), you know you aren’t getting any younger?” or “Am I gonna be a grandma (or aunt or uncle or grandpa…) any time soon?” or “So and so just had a little one, have you and (insert hubby’s name) given any thought to when you’ll start having kids?” or my personal favorite “Are you pregnant yet?”
To a married woman with one child: “Are you planning on any more children?” or “So and so is getting older, don’t you think it’s time to give him/her a little brother or sister?” or “Oh I never thought you’d have just one.”
Don’t get me wrong, none of these are said to be insensitive and none are said to be mean, but when said to someone struggling with fertility issues they can cut like a knife as they are a reminder of their empty womb. Even worse, for many, it can feel like a personal attack on their femininity. Wrong, right or indifferent, when it comes to getting pregnant, focus is still socially placed on women. And when we can’t have children, many can and do feel like they have failed at being a woman.
As I mentioned earlier, I have always wanted to be a mom. From as long as I can remember I played with my dolls as they were my “babies” when I was a little girl and as I grew into young woman I dreamed of my sweet babies. To my knowledge at the time, no one in my family had issues getting pregnant so it never occurred to me that I would ever have an issue. I naively assumed I’d get married and have kids… just like everyone else did.
I wanted children with such a passion that when my husband and I first started shifting from “friends” to “more than friends”, I bluntly said to him, “Look, I want children. I know you have kids already and if you don’t want more or you don’t want to take that on, then we need to end things now.” Thankfully he said he did but at the same time he informed me that he was, and I quote, “fixed”.
I talked to my gynecologist at the time and she said that men get reversal vasectomies routinely and with great success, even in cases of vasectomies over 10 years old where scarring had taken place. As my husband and I progressed in our relationship, we both began researching. I thankfully found a doctor that had amazing success with reversals with an overall 98% success rate. When we were ready, we met with the doctor. We sat down, we discussed my health, my husband’s health, his past fertility and any potential pitfalls that may occur. We left with options – Plan A: reversal either a vasovasostomy or vasoepididymostomy to return sperm, Plan B: IUI (intrauterine inception – turkey baster method) if having trouble getting pregnant once sperm returned or Plan C: pooled IUI if there wasn’t enough count. (Technically, we were even given a Plan D to extract sperm during the operation to use for IVF if needed but we didn’t want to go that route.) Basically we left with great knowledge and a game plan. We felt confident given my family history of no fertility issues, given my husband had previously fathered two children with no issues and the doctor’s 98% success rate that we had a no brainer plan of action and in a short time we would be pregnant.
Before we could proceed, both my husband and I needed to get “testing” done to make sure there weren’t any pitfalls we weren’t aware of. Hubby had a simple blood tests…lucky man. Me, not so much. I met with my gynecologist and did have blood test to test if I was ovulating, what my egg count might be, etc. I also had a unique situation. Many years ago when I had a “lump” scare with one of my routine gynecological exams, I found myself getting a uterine ultrasound. Being as I was premed at the time and very curious I asked the tech what she saw. She mentioned everything was normal except where most are round, mine had a small dent at the top, like a miniature heart. I came to find out its called an arcuate shaped uterus. No previous doctor seemed worried about this but my current gynecologist ordered a hysterosalpingogram, aka painful torturous procedure. The purpose was to determine whether I had an arcuate, bifurcated or sternum uterus. At the same time it would verify that my tubes were not blocked. I do need to mention that when I told her we were looking at a reversal, she strong pushed for IVF.
So I scheduled my test. Did my research and discovered it had a history of being painful. I asked the doctor his opinion when the test was about to start. “Oh its nothing more than a bad menstrual cramp” was his answer. Then just as he was ready to flush the dye through my tubes, he asked his nurse to hold my hand and in that moment I knew he had lied to me, which was followed with confirmation as some of the most excruciating pain I had ever felt surged through my body. When the test was over, I asked if he could tell the type of uterus I had. He said, “I need to review the photos but the only way to tell is an MRI.”
A few short days later, I received a devastating call from my gynecologist. She informed me, “Your blood test came back and you don’t have sufficient egg count to get pregnant. Further, the radiological doctor says you have what presents like a possible bifurcated uterus and MRI is needed. So at this point, even if you could get pregnant, odds are you wouldn’t carry it to term without intervention. I will leave your results and information on IVF. I suggest you go to XYZ fertility clinic and see an IVF specialist.” And she was done. That was it.
I was distraught. I screamed. I cried. I balled. I screamed. My poor mother who at the time was in her 60s was saying she’d carry a baby for me. I was angry. And I shamefully and with much regret took it out on my husband. I blamed him for waiting so long to start trying to get pregnant. I blamed him for my wasted eggs and that now I didn’t have enough because I was too old. I was miserable. I cried more. I screamed more. I ranted and I raved. I felt like something I had so wanted for so long, desired so deeply, that in many ways had already defined me, was being ripped from me. This was not one of my finer moments. And my husband just held me. He let me get it all out. Then he said, “Let’s go see the specialist.”
So I picked up my results. Remember, I said I’d been premed at one point. Remember I said my gynecologist had pushed for IVF. Remember I said the radiological doctor had wanted to do an MRI. When I reviewed the testing and the reports, I smelled two agendas. From the radiological report, it was clear there was nothing that indicated I had a bifurcated uterus but was clear he wanted to push for an MRI. My fertility tests did not in any way show I was almost empty of eggs. I called my husband’s fertility doctor and shared the results. They weren’t worried but suggested meeting with the referred specialist for female fertility. Lesson 1 in this fertility journey: Beware agendas!
So my husband and I made the appointment to see the specialist. I have to admit, we really liked the specialist. He was upfront, listened, and made us feel comfortable. He reviewed the tests, reports and radiological film. Made measurements. Said I did have an arcuate and he wasn’t sure where the radiologist was coming from (confirmation of agenda #1). Said it really shouldn’t interfere with getting pregnant but may make a room issue down the road and may cause breech positions. Overall nothing to worry about. He also recommended I run my blood tests to verify the results. I also had to go through a ultrasound of my uterus just to make sure everything was ok. Lesson 2: Be prepared to lose all modesty. You are half naked, with the doctor, his nurse and your spouse all staring at your ultrasound. Just forget modesty.
He left us with everything looks good. He wasn’t expecting any adverse results from the blood tests and to basically go have fun once the reversal was done (confirmation of agenda #2). If we didn’t have success with that, then come back. With his nurse came a-whole-nother lesson. Lesson 3: For assembly line fertility clinics, thinking outside the IVF box is almost impossible. We had to explain to her 4 times that we were not seeking IVF, that the doctor wanted 1 test and 1 test only run – FSH panel. I kid you not. It was like talking to one of the automated phone recordings. She couldn’t seem to get that some people don’t need IVF. It was unreal frustrating for my husband and I because she was scheduling all sorts of appointments and tests for IVF. I think he finally said “stop!”
Lesson 4 came with my blood tests. Know what you are getting done and don’t be afraid to ask to make sure that’s what you are getting. The nurse had filled out about 40 different blood tests on my sheet. I was only getting one remember…FSH panel, which was one of the ones marked. So when I went for my blood tests, I had to argue with the technician that I was only getting the panel. After three different people came and talked to me, trying to convince me to get the tests done since I would need IVF, I finally got someone to listen to me. You may ask why this one is important. Well, many insurances don’t offer infertility coverage, including testing. And its definitely not one of the essential care benefits under the Affordable Care Act. So basically, it can cost an arm and a leg. In fact, despite what I thought was a cleared up test, they ran my blood for everything. I got a whopping bill of almost $1,000 and found myself arguing to get it cleared up as my test was a kind $100.
Despite the battle, I got my results which showed while I was slightly low in my egg count, which was expected for my age of over 30, I was no where near depleted. So after almost 8 months of trying to get ready for a reversal, my husband went in for his surgery. Five hours later, he was the proud owner of a working vasovasectomy. A month later, the trying began as did the testing. For two solid years, we went through alternating rounds of prednisone and Aleve. And frankly its not so fun and is very difficult on a relationship when romance and intimacy shifts to scheduled and “forced”. Every two to three months, my husband would have to make an early morning drive to leave his sample to test his sperm count. Ultimately, we would be told that while his count improved, he was not in the normal and ideal range for pregnancy on our own. And our lack of success validated this.
I can’t speak for my husband, but I started to despair again. And while consciously and logically I knew that it wasn’t my “fault”, I still felt like I was failing as a woman. Family and friends would get pregnant. Lesson 5 came: You can feel two diametrically opposed feelings at the same time. While I was thrilled for them and excited to share in their joy, it was also a constant reminder and sting of my own empty womb. I’m not exactly sure how to fully explain how you can be unbelievably joyful and truly happy for someone and yet feel sad for yourself. Unless you have been there, then I’m not sure its fully understandable. But know, when you have a friend experiencing infertility, many (not all) are happy for you, want to celebrate you and be there with you during your amazing journey but it also stings. Sometimes they may need to step away from all the baby. My good friend, also struggling with infertility, and I would actually get together monthly and have margaritas. It was our no luck margaritas. We knew we could share, be understood and not judged.
As I said, no success so we went to Plan B – IUI – and C – pooled IUI. While my husband had not reached “normal” count levels and motility, he did reach levels where one would expect the IUI or pooled IUI would work. Again, more testing and more pills. Sadly, when his samples were prepped for IUI, what kept coming back was a prepared sample that would only be good enough for one round of IVF, if that. One very kind nurse said, “I had been an IVF nurse for over 20 years before switching to testing, and truthfully, you guys are ideal candidates for IVF. God has proven me wrong before but you’ll spend just as much money going pooled IUI with these samples as you will if you just went IVF. And you will have better results with IVF.”
Lesson 6: You never know what you will consider until you are faced with last options. We started talking about all sorts of different options and what we felt comfortable with. We talked about donor sperm from family, friends or donors to mix with my husband’s in pooled IUI. We talked about IVF, something we had not been comfortable with prior – mentally and financially. We talked about adoption. Ultimately, we decided to look at IVF.
To say we were stressed at this time is probably an understatement. I should note that at this time, we were trying to move to a new home and city over 400 miles away where we knew no one, my stepson graduated high school and we were moving him into college, my husband started a new job, my mother-in-law and my aunt passed away and I was the caregiver for my mother who was battling terminal metastatic breast cancer. My mother, who so didn’t want to leave me “alone” and so wanted to be a grandmother (biologically speaking) would constantly ask each month, “are you pregnant?” She wasn’t trying to pressure me. She knew how much I wanted a child and so wanted it for me. But I’d be lying if I didn’t admit I felt so guilty each month that I had not gotten pregnant. That I couldn’t tell her she would be a grandma.
Thankfully my husband’s fertility doctor had a semi-local referral for us. Lesson 7: Not all fertility clinics are the same. We met with an amazing doctor who put all my fears at ease and her clinic completely shifted our opinion of IVF clinics. She listened. She had spoken directly with my husband’s fertility specialist and had a recommended treatment plan. She took my history into account. She was amazing. Ultimately, our plan included IVF with ICSI. Basically, its traditional IVF with some help for the sperm. They assist the sperm in getting to the egg. Based on the stress going on in our life, the recommendation was start the testing – blood tests, genetic testing, and in my personal case, cancer genetic testing because of my mother and her family history. And when we were ready, to then proceed with IVF.
Less than a month later, my mother passed away. Again, everything but the old fashion trying went by the wayside as I dealt with her passing and her estate. Needless to say, I did not get pregnant before she passed and I wasn’t getting pregnant in the months following.
In April, we decided to start the process again. My husband and I did our blood tests. Lucky guy again only had one small vial for a the genetic tests. Me, I had an oil change of a blood tests – think 10 plus vials, a urine test and a separate poke for the genetic testing. Oh and did I mention, I also then had another poke for my genetic cancer screening. I don’t think I have ever mentioned this but I am petrified of needles. I have one good vein. I clot fast and occasionally they collapse. So I hate blood draws.
At the same time, we looked at the financials. Based on my niece’s experience, I knew we were looking at over $20,000 for the testing, storage, IVF, and implantation, so I wasn’t overly surprised when the estimate came in right around $20,000 for one round of IVF and one implantation. We were given information on medical loans. We were also given information on assistance programs that offer 50% back to 100% back if you don’t end up with a healthy baby but they required two to three IVF rounds. For the record, one IVF session can give you multiple viable embryos and you have to go through them all to fulfill these programs requirements. I began researching other programs and options as I’d heard of grants and foundations that offered help. Neither my nor my husband’s medical insurance covered any infertility. We thankfully did have the funds and consciously choose we wanted to try, even if it meant the possibility of spending $20,000 for nothing. We knew we could go through all of this and still have no child.
As we looked at IVF and what the potential outcomes could be, other emotional battles began. What if we were fortunate and had multiple viable embryos. Our genetic tests came back and there was nothing to decrease the odds of having viable embryos. Based on my uterine ultrasound, I had 10 viable fallopian tube ends that could with the help of fertility drugs produce up to 10 eggs for fertilization. We had always wanted two children so if we had at least two viable eggs we knew we would go through enough implantations to get two kids. But what if we had more. Many a moral discussion and emotional rollercoaster began. If we had three eggs, we’d just go ahead and do three implantations. We’d not thought about three kids but we were talking about that now. But what if there were more, a real possibility. Do we donate them. Do we destroy them. Do we keep implanting them. Do we just keep paying for storage and keep them frozen forever. I know it seems ethereal but these were real conversations we were having that evoked real emotions in both of us. Neither of us wanted to just keep implanting, depending on the number. Nor did we want them to exist frozen into perpetuity. One of us was completely against destroying them as they were life in that person’s mind – “our baby”. The other felt equally strong about donating them – having their child out there in the world without them. These were deep conversations mixed in with conversations about – what if it doesn’t work. Then what?
Come August the stress consuming our lives seemed to die down and we had a plan we were following to help us grow our family. We were more “relaxed”. We were waiting on my genetic cancer screening. The results came in – thankfully clear. Our IVF specialist email me to schedule us to start the actual IVF process – get me regulated to their needs, put me on fertility drugs to build up my egg count, schedule our orientation, etc. I was going to email them that day to set up our first appointment. But in my due diligence, like every month, I peed on the pregnancy test stick, fully expecting a negative reading like every other month had been for the last two plus years…two pink lines. Miracle of all miracles, I was pregnant. Lesson 8: Always have hope.
I know given our odds, our story is unique and not the norm. But it should give hope. Fertility challenges are faced by many, often in silence and always with a lot of pain. The conversation needs to shift from silence, from “something we shouldn’t talk about” to one of “you know what, I struggled too.” We are a community and we need to recognize a few things in my opinion. First, family status isn’t something that should be assumed. Just because someone’s married, doesn’t mean we should assume they should have kids. Perhaps instead of saying, “when are you gonna make me a grandma or grandpa?” or “you’ve been married a while, when are you gonna add baby?”, change it to “Are you looking to have children?” With the number of people struggling with fertility, we really need to figure out a way to say things more sensitively. Trust me, someone struggling is already hurting. Second, the stigma around infertility needs to be removed. It should be just an open topic of conversation as any other pregnancy topic or health struggle. Just as someone struggling with depression or ADD or diabetes or fill in the blank doesn’t and shouldn’t feel ashamed or struggle alone, neither should those struggling with infertility.
And if you are struggling, please know you are not alone and there is hope.
It’s a long post, I know but if our story helps one person, gives one person hope, then it was worth sharing.
Note: I have expressed a lot of opinions. These are mine and mine alone. They are formed based on my experiences and my interactions. I do not expect everyone to agree with me. You are entitled to form your own and encourage you to do so.