Rainbow In The Making

Jordan and I have made the decision to delay my next IVF treatment until this summer for a few reasons: 

The weather has made travel some days unpredictable 

The recent inflation and uncertainty about what’s to come in the world makes me extremely hesitant to spend what is over a quarter of my annual salary right now

I would love a few more months to focus on my health and fitness, to get me in the best shape possible for this 2nd round 

My neurologist appointment got moved to May and we would like to know of any other issues before IVF treatment 

Regardless of the outcome of our transfers we would like the timing to allow us to take a winter vacation in 2023 (it’s been 3 years and we really need the break) 

Our new plan is to start my priming cycle in June with a retrieval planned for July. Though that could be pushed back another month depending on timing. 

Nearing four years of loss and infertility, I have had near every gynaecological/fertility procedure available. 

Post laparoscopy, ablation surgery and a hysteroscopy I was given four pain pills. FOUR PILLS. For weeks worth of discomfort and nearly 4 weeks off work. I couldn’t even shower alone for over a week. But when I had my wisdom teeth removed, I was given an entire bottle of T3’s and only needed maybe a quarter of them, if that. 

When I had my biopsies done, no pain medication was given, no freezing was offered, and the clinic had forgot to advise I take a OTC pain killer before the procedure. Not that an OTC painkiller would’ve helped with the discomfort I experienced. My clinic originally tried to convince me to skip this procedure because it was “extremely painful”. They were right about it being extremely painful, but how can they acknowledge this without offering medication or freezing? Instead we're encouraged not to get a clear understanding of our body or suffer through the process. 

When I had my HSG no pain management was given. I was told to take an low dose pain killer beforehand. As if that would be enough to help with the sensation as dye was pushed through your uterus/tubes with enough pressure to clear any small blockages. And don't get me started on how I waited in a public hallway in nothing but a hospital gown for over 30 minutes before my procedure, not allowing me any sense of comfort or privacy. 

When I had my egg retrieval, the only clinic in my province does not offer general anesthesia. Because apparently shoving a needle repeatedly in to your uterine wall and ovaries does not constitute as a procedure which would benefit from GA. If you saw the amount of blood on the examination table after my 1st retrieval or the two nurses pushing down hard on my pelvis to try to get my left ovary to become more accessible, you’d probably agree with me, more than freezing and a quick shot of medication needs to be done. 

It’s been a while since I’ve been really active on this page. Truth is: I'm STRUGGLING.

Going in to our first round of IVF I had so much ignorance and blind faith that pushing myself through the process was so easy. I didn’t know what I would be up against and didn’t care because I thought for sure it was going to work. There was some doubt that filled me when we got our disappointing numbers based on what my Dr had prepared me to expect. But even with 2 embryos I still had a lot of faith we would beat those odds. Now I know better. I truly think that is the part that is killing my excitement and making me debate pushing out our next round. This last year wrecked me. Between procedures, losses, a diagnosis, a not so great recovery and more developing neurological symptoms I am scared and to be frank, hopeless.

I am very fortunate to have been referred to one of the top 3 neurologists in the province and my appointment is later this week. I’m worried of another diagnosis. Another round of grieving a life a little different than I expected. 

I thought life was hard childless. Now I’m learning it’s even harder childless and in chronic pain.

My neuropathy issues have gotten worse this last month and are now at a point where I struggle to do much of anything some days. Standing for an hour or two at a time causes extreme pain. The numbness and tingling has extended to my arms/hands as often as it's in my legs/feet now. I'm sensitive to the lightest bit on pressure on parts of my body. I wake up feeling like I am 80 yrs old and my joints ache. I spend one night out and I’m exhausted for the rest of the week. Some days I can’t even shower standing up.

What a ride. Here we are awaiting our consult appointment for our next round of IVF. Let me just be honest it blows my mind to still be here in this (in)fertility purgatory. 

Here I am almost exactly a year to the date of our IVF consult for our first round. I went in to it with such blind hope I never allowed myself the thought that we’d still be here, shelling out thousands of dollars for another round of the ‘IVF lottery’. I never expected what the year really had in store for me. I foolishly thought a successful pregnancy was undoubtably happening this year. That all our bad news was over, or at least soon to be. I knew I was headed in to a battle but I thought the outcome was guaranteed. 

I was so wrong. 

2021 brought me a lot of things: 

-A chemical pregnancy  -Three rounds of medicated cycles (Letrozole) -Hysterosalpingography procedure -An egg retrieval that yielded disappointing results -Ovarian hyperstimulation syndrome (OHSS) post egg retrieval  -One failed embryo transfer  -ERA/EMMA/ALICE biopsy (aka literal torture)  -Probiotic treatment  -Intralipid therapy  -Progesterone in oil injections -Another failed embryo transfer  -Hysteroscopy -Laparopoic surgery  -A diagnosis of Stage 3 Endometriosis  -Nerve damage from surgery (neuropathy in legs)  -Chronic, unrelenting fatigue  -Gaining back about 20lbs of the 60lbs I worked so hard to get off and losing all of my fitness stamina 

To be brash, 2021 sucked. And going in to IVF Round 2, I now understand this year will probably suck too. But that’s okay. What matters is we aren’t giving up.

Starting 2022 and soon another IVF round, I am thankful for: 

-Knowing what we are up against in the medically assisted pregnancy world  -Having a diagnosis  -Developing an even deeper/closer relationship with my husband  -My (in)fertility friends  -Two doctors who undoubtably are by my side throughout this entire process  -Having the ability to ‘afford’ to try this all again  -Knowing that I have lost the weight and built up the stamina before and I can do it again 

Had my post-op appointment this evening and finally got clearance to resume my regular activities. I had the chance to see pictures of the endometriosis they found and tried to get some answers for some post-surgery complications.

A few weeks ago I started dealing with swelling and tingling/numbness in my legs and feet (sometimes my hands too). My surgeon said this may be nerve pain from positioning during surgery and that this ‘should’ go away. But unfortunately, may be something I deal with for the rest of my life. For now I am to monitor it and follow up with my GP should it not resolve itself or gets worse in the coming months.

Despite my happiness to finally be diagnosed. I have been struggling this last month with accepting my diagnosis (Stage 3 Endo). Struggling with the fact that my husband has been carrying more of the load in our personal life. That I could lose organs to this disease. I might potentially never bare children. I will definitely need more surgeries in the years to follow (as they were only able to do ablation, not excision). If I am able to conceive, my daughter(s) will be 7-10x more likely to have this same debilitating disease. I know it could always be worse. And I KNOW there is power in knowing what you are up against, but it is still a hard pill to swallow nonetheless.

While I am grateful that after my ablation surgery I feel empowered by validation of my pain; I am so worried about how my symptoms will progress. Especially with all the hormones needed during my future fertility treatments. I am so scared of being in more pain and developing new symptoms or having to deal with these post-surgery nerve complications for the rest of my life. I’m even more scared of becoming more of a burden.

As these years of heartache and treatment start to weigh on me, I am reminded of what this journey has taught me: ‘the only way through is forward’. So for now, we will try a few more medicated cycles in hopes that surgery has made a change to my reproductive environment and in the new year we will look in to starting Round 2 of IVF.

It takes on average 7-10 years to get a diagnosis for endometriosis. For me, 12 years. TWELVE YEARS!!! 

My first symptoms started like most when I first got my period. Some cycles were so heavy and the cramps absolutely debilitating. Sometimes to the point of temporarily losing my sight from the pain. I was told the women in my family had bad periods and brushed this off as normal. THIS IS NEVER NORMAL. I have told many doctors this and none of them have ever been concerned hearing this. That should’ve been a MAJOR RED FLAG. 

When I was around 16/17 I started getting random stabbing pains in my lower chest, extremely painful but gone as quick as they came. I had so many diagnostics done for it over the years but it remained a medical mystery.  Now I know this can also be symptom of endometriosis. 

When I was 20 I got off birth control and my entire world changed. My anxiety began to skyrocket. I developed severe depression and insomnia. At the time I didn’t think they were related, but looking back now, I see getting off birth control is when everything started to go downhill for me. 

In my early twenties I had somewhat gotten used to the pain. I popped naproxen like crazy during my periods and was never without a heating pad. Some cycles I’d have cysts rupture and the pain would be so bad I’d be calling Jordan to come home ASAP because I legitimately felt like I was dying and fighting to stay conscious. Luckily, I only had a few of these episodes a year. This is when I also started developing gastrointestinal issues, which I originally thought was linked to my anxiety, but even when I got that under control the gastro issues only got worse. 

After my miscarriage I developed Hidradenitis Suppurativa (a chronic skin disease also known as acne inversa). This typically flared up before mensturation but it took me a while to really notice this. While endo does not cause hidradenitis suppurativa quite a few people with hidradenitis suppurativa also have endometriosis. Also around the time of my miscarriage I developed hair-loss that never stopped. Now, two years later, I am still battling my thinning hairline. Unsurprisingly, hair-loss can be yet another symptom of endometriosis. 

Once I started our first IVF cycle I thought a lot of the symptoms I was experiencing were due to the medication and I’m sure a lot of them were. But once our first round ended and we ran out of embryos to transfer, I got off all the medications and didn’t feel any better. In fact, I felt worse. I was cramping 3/4 of each cycle. My fatigue became so extreme doing anything became such a challenge. My hips hurt, light pressure almost anywhere on my body was extremely painful, my legs frequently ached, migraines were occurring more often than they ever had. The nausea never went away. 

Once I started suspecting endo I started paying a lot more attention to my body. I’d check in with myself every couple hours everyday and see what hurt instead of dismissing all my aches and pains as normal. Almost every day at least a few things hurt, almost everyday there was some sort of a struggle when it came to living my life.

So I want to take a moment to get on my soapbox and say, these symptoms and many more are NOT NORMAL. Periods shouldn’t cause you immense pain, you shouldn’t have heavy periods with lots of clots. If you’re chronically exhausted from the point you wake up; you aren’t lazy, something is wrong. Go see your doctor and if your doctor dismisses you, find another. Don’t give up, you owe it to yourself. 

I have a chronic, incurable disease. I’ve been living with this painful disease undiagnosed or treated for 12 years.

I have endometriosis. 

I cried tears of joy getting this diagnosis yesterday. I spent years being hard on myself thinking I was weak and lazy. 

In the weeks leading up to surgery I would have a few hours without pain and start to question myself and if I really needed this surgery. I can now acknowledge that these feelings came from years of being told I was fine and having to deny the intensity and persistence of pain for so long. 

Over the years I have processed a lot of my pain as “discomfort” or “odd feelings” because this is the brain’s way of tricking yourself in to not feeling the intensity of pain when it becomes chronic. My body was taking care of me the best it could and all I could do was hate it and think this was all in my head, that I just had a bad body and a lazy brain. 

There were so many signs and symptoms I couldn’t connect the dots to for so long. But I am so, so glad to finally have this diagnosis. 

We had another adoption meeting earlier this week and have decided that currently that is not the path for us. Becoming aware of a lot of the rules/regulations has made us realize this isn’t the option for us currently.

What about it wasn’t for us? The parent(s) must bring the child to our home, knowing where we live. Once the child is placed in our home, the parts still have 21 days to change their minds and the child can be ripped away from our homes with nothing to show for it. The first few months they want the birth parent(s) to visit the child in our home often.

While we understand these rules are in place to protect the mental health of the birth parents, we feel it doesn’t take in to account the mental health of the prospective parents. After going through pregnancy loss, failed fertility treatments, surgeries, there is a lot of trauma there too. The idea of having a baby in my home and birth parent(s) in and out of my home with 21 days to change their mind terrifies me. I know this will prevent us from properly bonding with the baby the first few days. I know there will be a lot of anxiety, and fear.

It’s hard to accept this isn’t the right choice for us. It’s closing one of the few doors we currently have open (adoption, IVF, donor embryos and surrogacy). But for now, it’s not the right fit.

I’ve been having some kind of flare up for about 2 months now. Ever since finishing our first round of IVF my period has gotten worse and my cramping is now near almost constant no matter where I am at in my cycle. I have read that estrogen can worsen the pain and inflammation already present with Endometriosis. It would surely explain a lot of my sufferings since all the hormone treatment I had during my first IVF round.

I go to bed in pain and I wake up in pain. I am miserable and uncomfortable and exhausted always. Nothing helps.

I am hoping so hard that they find something during my laparoscopy. Originally, I just hoped they could find a “cure” or reason for my infertility. Now, I hope to god they find the Endo they suspect might be there, remove as much of it as they can and give me my life back.

I am struggling hard with myself right now. I am frustrated I have become so lazy and have no desire to do the simplest things. I am already bored of myself and every day being a “bad day”. I try to be gentle and remind myself that this is not laziness but something else going on. I tell myself that I am listening to my body and giving it the rest I need. But I don’t want to give it rest. I want to be able to do things.

Well so much for that waitlist! Things are moving much quicker than we anticipated. Today I got confirmation that my surgery will be on October 21st! 31 days!! 

While I am absolutely thrilled it will be much earlier than expected - now the nerves are creeping in. Here’s hoping this will all be worth it and they’ll find something wrong with me!

After an excruciating wait, we finally had our follow-up with Dr. Elliot. He agrees with our thoughts that endometriosis might be a concern with my unexplained infertility (as it is with ~30% of unexplained infertility cases) and the pain/discomfort I have been experiencing.

Dr. Elliot has suggested that we hold off on IVF Round 2 until I have a laparoscopy. My need is seen as somewhat urgent so I will be closer to the top of the list to get this done. He is hopeful I can have my surgery booked for November/December, as long as this 4th wave of COVID does not put a pause on elective surgeries. If it does, he worries it might be more than 6 months before we get this done.

Until my laparoscopic surgery I will be continuing with Letrozole cycles so we can at least feel like we are doing something. After my laparoscopy we will move on to our final round of IVF with a much more aggressive protocol. We hope to end up with enough embryos for me to try a few transfers and/or proceed with finding a surrogate.

On the adoption front… we will be having our virtual Initial Interview and Application Meeting early October. However, that is as far as the process will go for us until their next Education Seminar at the end of January. In 2022 our perspective parent file will be open but we will still be at the mercy of being chosen. A process that can take 1-10 years.

I won’t lie and say this doesn’t all suck. When we started fertility treatment a year ago I thought by now we would definitely at least have a baby on the way or even another miscarriage. Right now I am feeling further away from the goal than ever. Luckily, we are working with an agency that allows you to pursue fertility treatments while you wait for a match. So we don’t yet have to make a choice on which road to go down, we can at least go down all of them simultaneously.

My mental health has been terrible the last few months. Accepting that our entire first cycle of IVF completely failed is a hard pill to swallow. I really thought the first cycle would be all that was needed (how silly of me). Doctors played it off like they weren’t even entirely sure I needed IVF and that this would be shoe-in for me. From a disappointing response to stims, a low amount of embryos and two failed transfers all I’ve gotten from my medical team is shock and apologies.

Infertility sucks. IVF sucks.

It is so incredibly heartbreaking and isolating. You are constantly trying to navigate in a world where others don’t understand you. You are constantly ridiculed and misunderstood for your loss and trauma. You become the elephant in the room that no one knows how to address. You are reprimanded by friends and family for not being able to be the same person you were before.

You fall behind everyone else and most leave you to be forgotten. People get tired of asking how you are. They get tired of feeling awkward around you. They get tired of putting in more effort. They get exhausted by your grief. Soon the phone stops ringing and the invites stop coming and you’re shut out.

The truth is this last year has been absolute torture for me. No one likes being the black sheep. I am already my own worst critic, to have others begin to criticize me just becomes too much.

I have no trust for my body. I have no LOVE for my body right now.

I have been a shell of a person and I can acknowledge it but there is no will left in me to change that right now. All the energy I have is being put towards moving forward, to surviving. We’ve been met with rejection every step of the way, but we won’t stop.

I never thought I would be devastated to NOT have a miscarriage.

When I lost our first baby two years ago the loss almost broke me. It still almost does. It was something I never wished to experience again. I hated every moment of it and I still do — but some feelings have changed.

After a failed IVF cycle I am sitting here waiting to start round 2 and researching other options and I can’t stop kicking myself about how neither of our embryos implanted. The timing was perfect, the transfers went flawlessly, the 2nd transfer our embryo was already hatching after being thawed, I did intralipid therapy, my lining is always perfect, my hormones are right where they need to be. Why can’t I at least get the embryo to implant?

I feel like my ‘diagnosis’ of unexplained infertility is bullshit. There has to be something wrong with me. Why can none of these embryos at the very least implant? Why after 3.5 years of trying have I only had one miscarriage (that was now nearly over two years ago)?

I don’t know where to go from here. My clinic keeps telling me we’ve maxed out every diagnostic option but they don’t offer much in regards to testing here. They won’t even test for natural killer cells (NKC) in Manitoba. Who know’s what else I am missing out on. Is it an immune issue? A clotting issue? PCOS? Some other missing diagnosis? Short of a laparoscopy I don’t know what else to ask for.

I truly never want to experience the pain of losing a baby again, but I am missing the hope that came the first few months following that loss. We were so close, I really didn’t think two years down the road I’d still be waiting for a positive beta again.

I also never thought I’d be at a point when I am upset about not having a miscarriage. But here I am. And while a large part of me feels guilty even uttering those words that’s my truth. I’d feel a lot better going in to round 2 knowing that we were at least close to the finish line. But so much of me feels like trying another round would just be another huge financial burden for nothing. Being honest, today I have no hope of implantation with any future embryos. I have so much distrust with my body. Tomorrow I’m sure I’ll feel differently, I usually do.  

I am going to have a mental breakdown with this fertility stuff. The government and our healthcare system is fucking bullshit.

$14,000 for adoption and we could be waiting 1-10 years. $4,500 just to apply for the damn chance. And they also won’t let us apply until January cause they’re “full”.

Our family doctor today suggested with this next round to maybe look in to surrogacy. So that’s another $20,000 for an IVF cycle and then $60,000 for a surrogate (this one has a $8,500 application fee too).

I am never going to have a baby. This all seems so impossible and I am so upset. I am so tired. I don’t get why I am being punished like this. 

And just like that our first IVF cycle is over.

On July 22nd we transferred our second and final embryo. We decided this time around to keep it under wraps only telling a few close friends/family members.

We had such high hopes for this embryo. Unlike our first this one didn’t need any assistance hatching and we were lucky enough to have the most senior doctor at the clinic perform the transfer. If this baby stuck it would’ve been the greatest anniversary gift and baby’s due date would’ve fallen 10 days before our first child’s due date.

Unlike my first transfer I didn’t start bleeding early and I had great hope that the progesterone injections and intralipid therapy had maybe helped.

Unfortunately, on our 7th anniversary we learned this embryo wasn’t able to stick around either. Once again, my body failed to do the one thing it should be able to do.

I (we) are absolutely devastated by this. This second embryo loss feels so much more final because now we’re out of chances for this IVF cycle. Out over 20 grand with absolutely nothing to show for it. Over 35 injections in my stomach and hips and hundreds of pills. 16 ultrasounds. 23 blood draws. An ERA/EMMA/ALICE biopsy, a hysterosalpingogram, intralipid infusion therapy and 5 months of feeling like absolute hormonal crap.

There was 12 days and 3 lbs between these two pictures. 12 days of estrace and 6 days of progesterone.

Having lost 50+ lbs last year just before starting IVF I was in the best place with my body. I felt good about myself and that confidence translated to many other facets of my life. I felt totally ready to take on this IVF journey being the most in shape I have been in years.

I wish someone had warned me about IVF bloat. And that would be unlike any other bloat I have experienced. I feel huge. Like a beach ball has been stuffed inside of me. I feel like I lost all the progress I made in the last year despite the scale telling me otherwise. I feel worse about my body than ever before. I feel uncomfortable in anything that has a waist band.

Bloat is common during IVF. While not everyone experiences it, or experiences it to the degree I have, it is a common side effect of IVF medications. Many women end up needing a whole new wardrobe on top of all the medication, treatment and check up expenses. Yet another financial blow I wasn’t prepared for.

So here I am being vulnerable posting a less than stellar transformation to help show others that bloat is normal, it’s not a big deal, and it’s a small price to pay to potentially end up with a viable pregnancy.

And at the end of the day, it’s bloat. It’s only temporary.