- Posted January 8, 2014 by
Parma Heights, Ohio
This iReport is part of an assignment:
The Forever Infertiles - Life When Fertility Treatments Don't Work
It's hard to come out and share such personal details about such a taboo subject but teaching others about infertility has become something I am truly passionate about. So if that means sharing our experience, then I have no problem doing that!
It's now been 14 months now since that dreaded day when I heard "You are not pregnant".
Alot has happened since then, unfortunately alot of bad things. I couldn't imagine my life getting any worse after that day, but it sure did. My health is terrible, my marriage is almost non-existent and we are in major financial trouble. (I will get into this more later)
I'm hoping to educate anyone that is interested by sharing Our Story.
My husband and I met almost 20 years ago when he was a freshman in college. He lived across the hall from prom date and good friend. I had a crush on him from the very first time I met him. He had a girlfeind at the time and I was shy when it came to dating, so it remained a crush for awhile. We started dating casually a few years later but it never got serious. Then we both ended up going back to school at the same college (in our mid 20's) and became very good friends and eventually became inseperable. We dated seriously for the next few years and the day before my 30th birthday he proposed. We got married the next year, October 10th, 2008, we didn’t know at the time how much life was going to test us over the next few years, but it sure did and this is where Our Journery begins.
Three weeks after we got married I was laid off from my job, something I was not expecting at all! Then 2 months after that my husbands mom suddenly passed away in her sleep.
We were only married for such a short period of time and we had already experienced two life changing events during a time that was suppose to be filled with happiness and excitement. Instead ours was filled with stress and sorrow.
We started trying to conceive as soon as we got married a little over five years ago, I was 31 at the time and my husband was 32.
I also learned during these months that I had ovarian cysts and that we made need some help getting pregnant. For the next six months we tried getting pregnant naturally, with the help of taking clomid. This did nothing but make my cysts worse. The time had come for us to see an expert so we made an appointment with a fertility doctor at University Hospital. We did two rounds of IUI over the next year, neither where successful. So we decided to take a break for a few months. What happened next is what ultimately brought us to the point we are at now.
It was December 26, 2010, the day after Christmas. We were sitting at home and Angelo wasn’t feeling well, I thought it was nothing. He must have eaten something that wasn’t agreeing with him, not a big deal. But he just kept getting worse and worse. It was around midnight when we finally decided to go to the ER, by the time we got there he was violently throwing up, something I have never seen him do in the 15 plus years I knew him. They took him back and did a CAT SCAN of his abdomen, I was still thinking it was nothing serious, but I was wrong. Angelo had a life threatening bowel obstruction, and had to have emergency surgery within the next 48hours. I was shocked and scared, I never even heard of a bowel obstruction, what the hell is that? All Angelo was concerned with was missing work, and not understanding the severity of his situation asked if he could go to work to finish up a few things before having surgery. That did not happen.
For those of you that do not know what a bowel obstruction is, it is when either your small or large intestine is partly or completely blocked. The blockage prevents food, fluids, and gas from moving through the intestines in the normal way. In Angelo’s case it was his small intestine and it was completely blocked, we came to find out it was caused by an abdominal hernia surgery he had two years earlier. His small intestine had gotten tangled in the mesh they used to repair the hernia.
Angelo was transferred downtown to the Cleveland Clinic Main Campus from Parma Hospital to have his surgery. They had placed an NG tube in the ER at Parma while we were waiting for the ambulance that was going to transfer him. According to Angelo and from what I saw, a NG tube is one of the most uncomfortable things you can ever experience. He didn’t know this yet, but he was going to have to deal with tube for longer then he thought.
(A NG Tube is a tube that is passed through the nose and down through the nasopharynx and esophagus into the stomach. It can be used to remove the contents of the stomach, including air, to decompress the stomach and let the stomach rest).
Angelo had surgery on Tuesday December 28th, 2010. The surgery was successful, they removed 6 inches of his small intestine, the removed the mesh that caused the obstruction and reconstructed his abdominal wall. It was going to be a long recovery, but he was OK and that’s all that mattered. He was in the hospital recovering for the next three weeks. A few days after he came home we ended back in the ER. Angelo’s surgical site was infected. They had to remove the stitches and he was admitted back into the hospital. He stayed there another week and this time was sent home with a wound vac, neither of us had ever heard of this and we were both a little nervous about it, but the doctors assured us this would be the best way for him to heal.
(A wound vac is Negative-pressure wound therapy (NPWT) is a therapeutic technique using a vacuum dressing to promote healing in acute or chronic wounds and enhance healing of first and second degree burns. The therapy involves the controlled application of sub-atmospheric pressure to the local wound environment, using a sealed wound dressing connected to a vacuum pump).
So we went home once again, this time with the wound vac. Having the vac helped speed up the healing time but also increased our anxiety. We now had to have a home nurse come three times a week to change out the vac sponge and to check Angelo’s wound. The vac would turn on and off sometimes throwing us into a panic, it could only be off for an hour or it would have to be removed. So one night it turned off and wouldn’t turn back on. I had to remove it, and off to the ER we went. There they decided that the vac would not be used anymore and instead I was going to have to pack his wound for the next several months. I was horrified, I never in a million years thought I was going to be able to do that! Well I had no choice and it wasn’t as bad as I thought. I had two do this twice a day for the next 3 months, but he was healing and again that’s all that mattered!
Now it was May 2010, we decided to try IUI again, this time at the Cleveland Clinic. We did everything we were suppose to do, drugs, shots and ultrasounds. Insemination day was finally here! Angelo went and gave his specimen, and then we sat and waited for them to call me back. But instead they came and got us and took us into a room. Then we were told something that would change our lives forever. The nurse told us that they could not go through with the IUI, Angelo had no useable sperm. It was like someone just ripped my heart out of my chest. I remember crying and screaming in the parking lot when we were leaving, why was this happening to use, haven’t we been through enough? He was fine before he got sick!
Another year went by and I think we both just came to the conclusion that children were not in our future. We just kind of ignored it and tried not to think about it. Well then in August of 2012 Angelo had another bowel obstruction. This time they were able to resolve it without surgery, the NG tube did the trick. A week in the hospital and a change in his diet was the outcome this time. We were relieved. With this happening again, it really pushed our baby dreams away farther and farther. Then this past February (2013) I went to my OBGYN because of some abnormal bleeding, after a few tests they learned that I had uterine polyps. In order to stop the bleeding and to ever have a chance of getting pregnant and staying pregnant I had to have them removed. So two weeks later I had surgery. After this is when we realized that we couldn’t ignore our dream of becoming parents any longer, now is the time. I made the appointment with Angelo’s Urologist and my Fertility OBGYN and we were going to come up with a plan, there was no more time to waste.
Angelo got tested again which resulted in the doctor telling us that there is 0% chance of conceiving naturally. We would have no other choice but to go ahead with IVF. So there it was, but at least we had a plan.
Everything was going good, the IVF was scheduled for the end of July 2013, we started raising the money, we thought we were on way. Then we got hit with another major road block. Angelo went to give the first of many samples that were to be frozen and used with a fresh sample the day of the egg retrieval. It was no good, nothing could be frozen. Are you kidding me? We finally decided to go through with IVF and now I was being told that wasn't even option?
So Angelo went and tried one more time, maybe it was a fluke maybe it was a one-time deal, but no, there was not enough to freeze once again. Words cannot express what this felt like, I have never been in such a dark place in my entire life. I started questioning god and life. How could so many horrible things happen to us, why? Should we give up? Do we have to give up? What do I have to live for?
So we finally had another appointment with our Urologist, and it went a lot better than I thought it would. We basically only had two options left – Angelo could take clomid for the next three months and see if his sperm improve or he has a procedure called TESE done, but that would require surgery. So we decided to try the less aggressive thing first, the clomid. We really thought this was going to be it, he was going to go give sample in November and everything we would be good and finally we could actually attempt IVF!
As unbelievable as this all may sound, it is all true, and as hard as it may seem that another road block was headed are way, it did.
It was August now and I had just gotten to the ER with my father,we didn't know at the time but was in the middle of having a heart attack. My phone rang while my dad was getting an EKG and it was a nurse from my Infertility doctors office telling me that my recent AMH (Anti-Mullerian Hormone) test was very low. Your AMH level basically tells the doctor how well your ovaries are producing eggs. As you get older your AMH goes down. Women with lower AMH are not going to produce as many eggs as a woman with a higher number. Mind you I am in the ER with my dad who is having a heart attack, so everything she said to me that day pretty much went in one year and out the other. I spent the next few days at my dads bedside and would deal with this phone call when I know he is OK. He did end up having an artery that was 99% blocked so they performed and angioplasty and placed a stent into two of his main arteries. He went home a few days later and now it was time for me to deal with this phone call.
I had no clue what an AMH level was or why they were just checking it now when it was go time. I did some research online and came up with a list of questions for when I made the dreaded phone call. I sat there and cried for hours after realizing what it was. I’m only 35 and I have the AMH of a 40 year old, are you kidding me? After I calmed down I finally called the nurse with all my questions but unfortunately she couldn't answer many of them.
The first and most important question was, with all these things going against us is there any chance of us getting pregnant? In fertility there are no definite yes and no’s, this with the fact that every decision you make is going to cost you thousands of dollars, makes it really hard to know what to do. So I talked to the nurse and she said I am still producing eggs, just not as many, which just means they will change my protocol, the injections and drugs that will be used. So after talking to Angelo and knowing that there is still a chance, we have decided to go ahead.
My doctor did not want me waiting to see if the clomid helped Angelo because of AMH level, he wanted us to go ahead with IVF as soon as possible, which meant September. This also meant Angelo was going to have to have the sperm extraction surgery now (TESE).
There is only one doctor in Cleveland that performs the TESE surgery so they had to time my cycle up with the doctors availability. This took us to mid September. So it was all set, all the medications were ordered and purchased, Angelo had his pre-op, we were ready to go! Then just like that, it got cancelled again. I went in to have my baseline ultrasound and bloodwork, the very first thing you do when starting an IVF cycle. Well my estrogen levels ended up being way too high, which is a result of having low AMH, but I didn't know that at the time. My body/hormones were too far ahead for that cycle so it was cancelled.
This didn't even seem real to me, it was so unbelieveable that there was ANOTHER obsticle! How can so many bad things happen to the same two people!!!!!! At the time I thought this was the lowest I could ever feel, but that would prove to be untrue.
Two more months of anxiety and hopelessness went by. It was November 4th and I went to get my baseline ultrasound and bloodwork checked again. This time I was prepared, the only expectations I had were bad ones. You become this way after going through all this. To my surprise, my estrogen was low this time and we could start our cycle, I guess the 3rd times a charm.
My injections started that night and for the next week and a half I would be getting bloodwork and ultrasounds almost everyday. Just like everything else, there was nothing but a rollercoaster of emotions during this week and a half. One minute everything was OK, the next maybe not. This entire experience is like that.
So now it's November 18th, the day of my egg retrieval and Angelo's TESE surgery. Both our families were there with us as we were about to embark on dual surgery. I had more anxiety about him having surgery that I wasn't even thinking about mine!
Angelo's surgery was scheduled for 6.30AM, we had to bring a fresh sample from home that morning, they wanted to check it one more time before the surgery. We were sitting there waiting for them to take him back to the operating room and Angelo's urologist cam into the room and told us they may have found something viable. Never in a million years did we think that was going to happen. We waited 10 more minutes for the doctor to verify with the lab and yes they found THREE viable sperm, THREE! For us, this was amazing, he had not had one in 3 years. So his surgery was cancelled and off to my surgery/egg retrieval we went.
A couple hours later I woke up in the worst pain I had ever experienced in my life. It was unbearable, but I would do it all over again if it meant having a chance at being a mother. They told us they retrieved three eggs but we wouldn't know the details until the next day.
I woke up that next morning with nothing but thoughts of getting that phone call. When the phone finally rang, I was terrified to answer it. It was one of the embryologist calling and what they were about to tell me was once again unbelievable. They told me that out of the three eggs the retrieved only one was mature. They did perform ICSI (injected the egg with one sperm) but it didn't fertilize, there was NO EMBRYO. I cried and screamed for an hour straight, and then when I finally calmed down I got another phone call from the embryologist telling me it ended up splitting (the egg), it fertilized, it was now an embryo!!!! It was only two cells at this point and still had to break down a few more times before they could implant it back into my uterus, but it started! So they called each morning the next two days with updates on how the embryo was forming. My embryo transfer was scheduled for thursday November 21st.
We were like two little kids the morning of the transfer, I can't remember a time that either of us were as happy as we were that day. We were pacing back and forth waiting to go back, taking silly pictures in our funny outfits. Angelo had on scrubs, a facemask and bouffant cap and I was in my hospital gown, we thought it was funny!
Then we finally got to go back to the O.R. and the procedure finally started. It was the most amazing experience I have ever had. It would be the closest I would ever be to being pregnant or being a mother. We got to watch the entire procedure on a big screen TV and the ultrasound machine. We saw our embryo for the first time, we got to watch as they placed it in my uterus. This experience this day was beyond words, it was the best day of both of our lives.
Now we go home and wait, December 5th was the day we would find out, we would go in to get a blood test.
Well we didn't make it all the way to the 5th, I started bleeding a few days before and I knew, I knew it wasn't just spotting that could happen with pregnancy, it was my very worse nightmare. We went in on the 5th, but I already knew, but I have to say deep down I did have a little hope that I was wrong.
A few hours later we got the phone call, I WAS NOT PREGNANT. Five years of mental torture and thousands and thousands of dollars and this was it, the end.
I stayed in bed for a week after this, I hurt so bad and just wanted the pain to go away. We went back to the doctor on the 17th to kind of go over what happened, we were both dreading this but needed to get it over with. It wasn't a good meeting. Unless we had thousands and thousands of more dollars, we had no options, it's over, we do not get to be parents.
Because of the expense we really do not have many options, even adoption. People do not realize that ADOPTION IS NOT AN EASY PROCESS AND IS ALSO VERY EXPENSIVE.
Everyone keeps says, oh just wait it will probably happen naturally, but when you know our situation, male and female issues, what we have already been through and not gotten pregnant, it is impossible to have the faith,hope, and energy to think this. Our situation isn't like everyone else's who goes through this, it's very unique.
Another thing many people have said to me is, well you just have to focus on something else. Well THERE IS NOTHING ELSE that can ever take the place of being a parent. There is no replacing it, we just have to figure out a way to deal with it. Right now I have no idea how either one of us is going to do this. All I keep thinking about over and over in my head is that I will never get to experience what it is like to hold my own baby in my arms, I will never have all those experiences that everyone else gets to have, good and bad. Why did this happen to us!!!! The worst part of the entire thing is you can never escape it. It's in your face 24 hours a day. Yesterday I had to stand in line behind a baby for 20 minutes and it took everything out of me not to run out of the store crying. The day we came home from our last doctors appointment there was a woman in our apartment lobby talking baby talk to a baby in a car seat. Then my favorite, Christmas Eve Mass,we had to stare at some pregnant girl who sat there and rubbed her pregnant stomach straight for an hour and 15 minutes, I cried the entire mass. I don't hate people who have babies but it's a constant trigger for both of us, a trigger that will always be there, everyday for the rest of our lives.
I just hope I don't always feel like this because it's horrible. There is nothing that will ever fill this void in our lives. We fought a huge battle and lost.
The ONLY good thing that did come out of this is I did accomplish one thing, I have been a strong voice for all the couples struggling with this horrible and terrible disease called INFERTILITY. No one should ever have to go through this to be a parent, it’s not fair. It really shows you what a messed up world we live in. If the financial part wasn’t such a huge factor more infertile couples, including us, would have a better chance at becoming parents.
I also hope I brought more awareness to those who do not suffer with infertility and made some people realize it’s not taboo to talk about. IT IS A DISEASE just like any other, except this disease isn’t recognized by insurance companies, it is catagorized as voluntary.
Angelo and I did not choose to be infertile, it chose us, just like cancer chooses people, or any other disease. So why we and all other couples going through this are being punished by insurance companies sickens me. Not one dime of anything related to our infertility was covered by insurance. We are good, hard working people, who have an IMMENSE amount of student loans, which is one of the reasons we just don't keep taking out more and more loans for IVF, we just can't. We deserve children just like everyone else. Hopefully one day this will change and hopefully I will get to see it in my lifetime. I will continue to scream, yell, and fight for all of us infertile couples, even if our journey has ended.
Most fertile couples don't know what a long and painful road a couple suffering from infertility goes through. The constant up and down emotions, tons and tons of research, the waiting, the significant cost and the lack of insurance coverage (in our case, none).
As of now we are at a stand still, we can not attempt IVF again or even look into adoption because of the financial drain this journey has already bestowed on us. In addition to all that medical bills we also have an immense amount of student loan debt.
If money was not an option I would definatley attempt IVF again, at least one more time. Most woman get to a second chance with a frozen embryo that was created during their fresh IVF cycle, we did not. So in order to try again we would have to start from scratch with a more expensive protocol that would raise our chances of me producing more eggs.
So it's hard to move on mentally when you know that most of the time this requires more than one try. I still have some fight left in me, and realized if we were going to attempt something else I would want to do it sooner then later. I have no desire to ever go through the mental torture I am going through now. Why let yourself heal and then put yourself through it again. My thoughts are you keep going while you are already in it.
Another a major component is time. A womans body is a ticking time clock and unfortunately mine is alot more advanced then other 36 year olds. With my low egg reserve (AMH levels) it is scary to think of letting anytime go by.
And then there is adoption, which scares the hell out of me, and is also very complicated and EXPENSIVE. It is NOT a easier path to choose. The thought of finally having a child and then the chance of the biological parent changing their mind and taking theat child away from you scares the crap out of me, it makes me sick to my stomach just thinking about. This maybe selfish of me, but there are SO MANY Psychological issues that I think after going through everything we have already gone through in our lives that we could not handle this.
WIth this all said, money is the only thing holding us back from trying anything else and that makes me SO ANGRY. We aren't talking about small amounts of money either. We are talking about numbers that most people just don't have.
We are middle class hard working people. We both made the decision to go into debt for for our education and if we didn't have that we may be able to keep going into debt trying to have a baby. I personally regret ever going into that much debt for my education, this is another topic that makes my blood boil. At the time you are just thinking about getting that degree and you do not see that END NUMBER with INTEREST. When I was working as a graphic designer, what I went to school for, I was making less then what one year of my college education cost. Mind you are school was a mandatory 5 year program. The world is a very messed up place. If only I knew the things I know now when I was 18!!!!
Thank You for taking the time to read "Our Story".
I truly appreciate it and hope it helps to spread Infertility Awareness!
Jodi Sainato DiPierro
To learn more about Our Journey and our life today visit:
I have also started a private online support group on Facebook for those struggling with Inferility. I am proud to say we have over 100 members from all over the world as of today.
If you or someone else is suffering from Infertility and looking for support they can request to join here: