With this week came more bad news for the Horsley Home, our fertility journey and baby making hopes may have stopped just as quickly as they began. But, before we dwell on that, an update on my Crohn’s:
In my Crohn’s journey, this week marks my 2 months on Budesonide, with my prescription dose lowering to 6 milligrams instead of 9. I will be taking that for one month, and then my trial on this medication is over. So far, I have not seen or felt any signs of remission; my symptoms are pretty much the same, if not worse. If the larger dose doesn’t help already, then I can only imagine that the smaller dose will do even less?
This Thursday marked my 1 year anniversary of my Perianal Abscess, which led to my 2 butthole surgeries. I wish I was kidding. And, humorously enough, it was also World IBD Day on Thursday, too. I hope you remembered to wear Purple, I tried to remind you on Facebook.
I was finally scheduled for an appointment for the Double Balloon Enteroscopy, but I have to go to Indiana University to have a new patient consultation first. No one in Kentucky offers it, so the VA has to locate an outside source that accepts VA insurance. (See Another Week)
I was told it could be months until I have the scope done, so I will probably have already began a new medication by the time we do the scope. This means I have to take two trips to Indiana University. I wish they could just call me for the consultation, but I suppose this procedure is somewhat rare, so they need to make sure they physically see the patient before they go through with it.
This scope differs from a normal endoscopy in that it’s an extra long tube, looking further into my small intestine for inflammation and that damn Meckel’s Diverticulum (that could either be there or not be there). This means that the procedure takes longer – instead of the 15 to 30 minute time frame, this scope could last one to three hours. Let’s hope they are prepped for longer anesthesia and I don’t wake up during this one! (See My Crohn’s Journey)
Now, as for our baby-making journey, we received our semen analysis results this past Wednesday. (See Infertile Myrtle)
Of course, we had to call the VA and leave many messages and emails, just to get someone to tell him the results. We had tried getting the results from the clinic where he gave his special sample, but they refused to share the information with anyone without a waiver signature, not even the patient? His doctors at the VA were finally sent the information, but when you call to speak to your doctor, you are usually referred to telephone care, and they can’t see the information we needed.
Instead of the nurse returning our call, his primary care doctor called instead, which should have signified bad news. We were informed that we have male fertility problems, what she called Subfertility. Subfertility, which means there is a lower chance of pregnancy versus the chances of a ‘normal’ couple, depending on the situation, the causes, and what is exactly ‘wrong’ with the sample.
This news didn’t seem so bad, but then she told us what exactly was wrong with the sample: 95-99% of the sperm had Major Structural Defects, as she called it, with only 1% ‘normal’ sperm in the sample. This means that our type of subfertility is not ‘fixable’. To be safe and double check, we are retesting in 45 days, with a referral to Urology.
We are not sure what exactly seems to be the issue, whether it be a large head, two heads, or a double body. She told us the structural defects were either genetic or that he could have been exposed to something in life. Could it be the Navy or just bad luck? She also told us that he didn’t do it to himself. Our chances were NOT looking good. Our stomach’s both sank, our heart’s broke, and our dream’s of babies was taken away from us in a matter of seconds. When researching results and their accuracy, because his sample was ‘given’ at a clinic specializing in fertility, the results are almost guaranteed to be accurate. But, this will not break us.
Now, I know you’re thinking, there’s still that 1% of ‘normal’ sperm that you can use, and yeah, if there was a hundred million sperm and only 1% healthy, that still gives us 1 million healthy sperm, roughly. But, with the majority of sperm having major structural defects, the normal sperm are given less of a chance to survive. They either can’t make it to the cervix, or they wont survive the long trip to the egg. If there is any defect, then they aren’t allowed to penetrate the egg. Only 1 ‘normal’ sperm can penetrate the egg, but in our case, the normal sperm available is less than ideal. The chances of us conceiving on our own is almost nonexistent, and with more time, that chance continues to decrease.
When sperm have these major structural defects, most couples are immediately referred to IVF fertility treatments, but more specifically ICSI – IntraCytoplasmic Sperm Injection, pronounced ick-see. This ‘plan’ isn’t set in stone yet, I still don’t even know if I am infertile, too. I’ll see my fertility doctor next Friday after Occupational Therapy and Philips’s hearing tests. I tell Philip that I’m probably infertile too, and that we are truly meant to be together.
This ICSI treatment is furthermore into the IVF treatments, being a somewhat ‘stronger’ version of IVF. With ‘normal’ IVF treatment, the sperm is placed near the egg, after these sperm have been specifically chosen, cleaned, and tested.
With ICSI, the sperm is placed INSIDE the egg instead of near it. They take out the female’s eggs, and use a needle to insert ‘normal’ sperm inside, and wait a few days to place back inside the female.
This may be our only option for having children of our own, but there is genetic testing that needs to be done, as problems like infertility could be passed on genetically. There are higher risks with this procedure, for diseases and disorders to occur with the child, a factor we would have to discuss. Plus, it costs $15,000 – $18,000, per cycle, not covered by the VA Health Care.
The average couple takes 2 of these cycles (sometimes up to 5!), so our budget would be double or triple that price, with the chances of conception still only around a 40% chance. After 5 cycles, you are probably not going to ever conceive, so treatment is stopped.
With that price and risk being an issue, and adoption costing just as much, if not more, we may be in our late 50’s by the time we could afford it, and by then it could be too late. And this is if I am fertile at all! Surrogacy would be just as expensive, and I am not sure how we feel on a sperm donor – it would probably cost an arm and a leg too. But, we aren’t at that point yet, so please don’t offer up your eggs to me.
So no, Mary may not get her little lamb.
I have been a hot mess all week about it, crying, looking through boxes, and trying to wrap my brain around what to do. At first, we didn’t even know what to say to each other, so we found ourselves apologizing to each other and sitting in silence.
I always said that I just wish we knew if we could or not. I always said I wished we knew for certain whether there was a chance or not, that way, we could get beyond not knowing and save ourselves from future hope that leads to heartache. But now that we have the results, I almost wish we didn’t? I’m not angry, just confused and feeling low.
After all this time, I thought not knowing was hard, but I didn’t plan for this bad of news. I had always assumed it was me, problems with my eggs. At least then it would have been somewhat fixable, boosted by fertility drugs and hormones, giving us a better chance, and Wam-Bam, the sperm meets the egg! With the results we were given, we can’t plan on fixing the problem. (See What I’m Afraid Of)
The best way to describe it, is sadness. There’s a sadness in wanting something so much, getting ideas and hopes into your head and heart, and being told No. There’s a sadness in knowing we may never experience pregnancy, childbirth, or children. There’s a sadness in knowing that I think about kids every single day, and I have to break my habit of ‘what-ifs?’. There’s a sadness in knowing that I have a box of baby stuff, stuff that I have saved over the years, items that will never be used.
There’s a sadness in knowing that we will just be ‘Aunt Mary & Uncle Phil’, for all of our friends and family members with children. There’s a sadness in knowing that I will inevitably receive future baby shower invites, but never send my own. There’s a sadness in knowing that every month I’ll be visited by Moon Sickness, a heartbreaking reminder of our issues, and what will not happen for us. There’s a sadness in knowing that I shouldn’t expect a miracle, knowing I can never look forward to 2 pink lines, but also knowing I’ll still find that hope, only to be let down. There’s a sadness in knowing I’ll be asked in the future ‘did you guys ever want kids?’, and I’ll have to say yes, reminding me of all the years I had hoped, and the reality that we can’t.
I’ve tried to make light of the situation, in the past 3 days, offering to sell my eggs if they’re healthy. That could mean $10,000 per egg, if I’m lucky? If I’m not using them, it’s only fair to share them if they’re viable, or freeze them for our future. Maybe someone else could use them? Maybe we can use them later in life if we happen to win the lottery?
I have also suggested getting another dog if we find out that we just can’t. But I want a large one this time! I’m thinking Irish Wolfhound, gray in color, to name Gandalf the Grey. Our little hobbit dog, Bilbo Baggins, would love to have another fur baby in the house. If you don’t get the references, shame on you!
I have tried not to think about the results too much, trying not to dwell on it (yeah right) until we have a second set of results to compare the first set to. But, the information is hard to take in. This is some of the worst news that could have been given to us.
Thank you for reading and being a part of another dreadful week in our lives. It seems that we just can’t catch a break.
Please let us get some positive news soon – but I guess It Could Be Worse.
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Also found on Huffington Post, but a shorter version, Infertility is a Sadness