What Is Endometriosis?

Endometriosis is a disorder in which tissue that normally lines the uterus grows outside the uterus causing chronic, debilitating pain and menstrual irregularities. It affects around 1 in 10 individuals during their reproductive years. That is about 176 million people worldwide and counting. Because endometriosis is a full body disease, it has the potential to spread to other places in the body outside of the reproductive organs such as the chest cavity, lungs, liver, kidneys, bladder and bowels. It has been found everywhere except the spleen.

Despite symptoms like crippling pain, fainting, vomiting, pain with sex, severe bloating/”endo belly”, bladder spasms, etc, the only way to officially diagnose endometriosis or adenomyosis is surgery. And no, surgery is not a cure. Many sufferers go on to have multiple surgeries because the disease often comes back. Even a hysterectomy doesn’t guarantee that endometrial tissue won’t start growing in places it’s not supposed to again.

To top that off, there is also a possibility of developing adenomyosis, the sister disease to endometriosis, which is when endometrial cells exist or grow into the uterine wall. Both physically AND mentally debilitating diseases, endometriosis and adenomyosis are listed in the top 10 most painful illnesses to have. Both diseases are still being researched and examined to find a definite cause. And while there are various treatments and ways to alleviate pain and symptoms, there is no cure.

Many people are unaware that there are three different types of endometriosis and there are four different stages (I-minimal, II-mild, III-moderate, and IV-severe). Although this is good information to know, no particular stage determines the amount of pain or symptoms an individual may experience at any given time. Women can go years undiagnosed, and still be a stage I or have milder symptoms and be a stage IV. The main issue with stages III & IV is how it impacts your fertility.

And this is where my journey begins.

My Endometriosis Saga

I was 31 when I was diagnosed with endometriosis. I had been suffering for almost 3 years by the time of my diagnosis. This is my story of how endometriosis has impacted my life.

Prior to my issues starting, my periods were eerily predictable. Every 28-30 days lasting 5-7 days like clockwork. Then something changed. I feel like that change was triggered by using birth control. I remember my first incident- I had a period that lasted from April 27th until July 6th. Yes, you read that right- just over 2 months. At the beginning of July I decided to stop using my birth control and BOOM, my period stopped.

I made the decision to just try to track my periods and use the “natural planning” method for birth control to hopefully fix the issue. I started tracking my ovulation in August, buying a ovulation monitoring kit. I wanted to test daily over the next couple of months to figure out if I had a pattern or if it was going to still be as weird as it was when I was on birth control. My August period was barely there- basically 2-ish days of spotting then nothing. I figured I had already had such a long period that it was going to take some time to even out.

Toward the end of the month my LH numbers (what ovulation kits measure) slowly increased. I figured this was a “spike” and kept testing daily to see how long it would last. Imagine my surprise when after a week it still showed I was ovulating. Typically a surge only lasts 36-ish hours. On a whim I took a pregnancy test and walla! It was positive.

Quite frankly, I was shocked. Apparently my August “period” was implantation bleeding. I was scared, nervous, and cautiously excited. Sadly, before the end of September, I lost the baby.

To say I was devastated would be an understatement. I won’t go into details, but I ended up having to switch doctors and go through 3 procedures before my medical issues were fully resolved. We also had announced to family & friends, so having to reiterate the loss multiple times and be the recipient of sad looks felt like a punch in the gut each time. However awful those looks made me feel, it was worse when they didn’t “get” it. I still am haunted by a colleague who said “I don’t get why you’re still so upset. I mean you were barely pregnant, so really there wasn’t much to get attached to. Why not just move on and try again?”

That December, my husband & I decided to relocate to Atlanta. This ended up being one of the worst decisions we could have made. With no job, no support network, and unknowingly facing months of infertility, I started slipping into a deep depression-a depression I’m still fighting to overcome. I desperately wanted to become pregnant again, but my periods were becoming increasingly painful and unpredictable. I tried supplements, working out, etc- nothing worked. Each cycle yielded the same results: a negative pregnancy test. I became so bitter and haunted by the pain of those negative tests, that when a sweet friend told me about her pregnancy that following summer, all I said was “that’s nice” and walked away seething. I still feel guilty about how I responded years later.

I started working with an doctor in May, and by fall 2013 it was determined that I had endometriosis. We started the treatment/diagnosis process with a laparoscopic surgery. It was scary and unclear if this would solve my issues or if they would even find anything wrong. I remember being terrified that they wouldn’t find anything, meaning it was all in my head, or that they would find something that was even worse than endometriosis.

After surgery, I was diagnosed with stage III endometriosis. He went on to tell me that this is likely why I had been unable to get pregnant again and it could have even been the cause of my miscarriage. He also cautioned that if I was to get pregnant, that my chances of having a c-section or pregnancy complications would be higher.

Still, I pressed on. After a few weeks of recovery, I went back to the doctor. My hormone levels still weren’t ideal for conception, so I was given fertility treatments. The treatments had some miserable side effects, but I was determined to see it through.

The first round was a dud, however, the 2nd round looked much more promising- I had several follicles that were healthy looking and ready. I was visiting my mom that Christmas and came down with a nasty cold. It was still pretty early to find out if I was pregnant or not, but I decided to try a test *just in case*. There was the faintest barely there line. I wasn’t even sure it wasn’t my eyes playing a trick on me. We went to the doctor to get medicine and they gave me another test. It was still faint, but they confirmed it was an early positive. I was so excited I didn’t even care that I was sick. Sadly, Fredric wasn’t with me, (he had already gone back due to work), so for the second time, I had to tell him I was pregnant long distance!

I was nervous wreck after finding out this time. I didn’t want to wait until I was back with Fredric to do an ultrasound-I NEEDED to know immediately if this was a viable pregnancy. I made an appointment at a local office and went with my mother. Hearing Everett’s heartbeat for the first time was one of the most magical experiences I’ve ever had. Though hearing his heartbeat gave me reassurance, I still worried constantly. I kept thinking I would somehow lose him or he wasn’t going to develop correctly. This time I refused to share or post about the pregnancy until I was almost to my 2nd trimester. I insisted on extra/early testing, just to make sure he was healthy and that he was growing normally. It wasn’t an easy pregnancy by any means, and I’m pretty sure the anxiety I had developed over the last 2 years of loss & infertility has never completely gone away.

Moving Forward

During this journey the worry about endometriosis always hung over my head. It was like this horrible nagging voice that would rear it’s ugly head any time I thought about trying to have a baby again. Thankfully, pregnancy & breastfeeding usually reduces the symptoms and spread of endometriosis due to your lack of period and the increase in progesterone, so I had a nice break from dealing with it.

Despite waiting until the day the pain would come back and start tormenting me again, I was happy with Everett and decided that being “one and done” actually worked out perfectly for us.

In January 2017, I took a pregnancy test in solidarity with a friend who was worried she was pregnant. Apparently the fates decided that they weren’t done throwing us curveballs, so while her test was negative, mine was a resounding positive. This time I wasn’t “joyous.” I was unprepared and shocked with just how simple it was to get pregnant with Finn. I was scared- my pregnancy with Everett was hard. Everett was also starting to really show signs that something unusual was going on with him. I essentially spent the whole first and part of the second trimester not really acknowledging my pregnancy. Don’t get me wrong, I went to appointments and didn’t “deny” my pregnancy, but rather, I didn’t “celebrate” it. I pushed forward full steam and eventually got my self to the point where I started spotting from overdoing myself. That spotting made me realize just how much I wanted another baby and how lucky I was that I didn’t have to suffer through another infertility cycle.

So What Now?

As of this morning, I was inspired to write this blog because my endometriosis is back. I had almost 6 years with “normal” periods thanks to pregnancy and breastfeeding, but unfortunately, the excruciating pain and ridiculously heavy period is back. I would venture to say that my period is actually worse now than it was.

Oddly, my periods are following a more “regular” cycle length, though they can still vary from 27-40 days, they are typically around 31 days. However, the last few months I’m seeing an increase of what is best described as a “mini” period in between my “regular” periods. My bleeding gets so severe that I suffer from vertigo, iron issues, cold-like symptoms, and don’t get me started on the pain.

Oddly, or maybe thankfully, some of my periods are manageable, and I’m able to continue being a mom with the use of NSAIDs over the course of the first few days of my cycle. Some are much harder than that. All I’m able to do is get from the bed to the couch. These are the days that I’m especially thankful for Fredric. I know that I’ll likely need another one to two surgeries in the near future, which now that I’m a mother is even more scary.

I never wanted to be a woman with chronic pain. I certainly never wanted to be a mother with chronic pain. But I truly believe we’re all shaped by our experiences. The bad days help me appreciate the good days. My boys are learning how to be gentle with me when I’m feeling down-and seeing them learn to be nurturing is a reward on it’s own.

I’m just thankful that my good days still far outweigh the bad.

The post Motherhood Uncensored: Coping With Endometriosis appeared first on Not So SuperMom VS Society.

Without fail, multiple times a month, someone will claim Everett’s autism is caused by something outlandish. Usually, it’s the age old, well debunked, vaccine argument.

Some of the things I’ve been “informed” of, pique my interest enough for a Google search, and some are just so out there that it leaves me scratching my head.

The thing is, I’m no longer looking for a cause. I’ve accepted and embraced Everett’s diagnosis. While Everett may be on the spectrum, it isn’t his defining feature. So when someone tries to sell me some “miracle cure” or tell me how Everett “became” Autistic, frankly I don’t care.

They don’t understand that I feel like his diagnosis makes him stronger. That it shows me so many new aspects of the world I never would have noticed before. It makes our family better. Do we struggle? Yes- without a doubt. It can be isolating and lonely. I’m often confused and second guessing myself. However, it challenges us in good ways too.

Obviously, I hate watching Everett struggle, and our pocketbook doesn’t love all the costs associated with an autism diagnosis, but the way his mind processes things is beautiful. So when I hear these outlandish claims, I’ve learned to tune them out. Sometimes I’ll post funny tees with scientifically accurate comebacks, usually though, I just shake my head and move on.

Did You Know….?

Now for the fun part. I’ve compiled a list that includes some of the more crazy things people have claimed are the cause/cure for Autism.

DISCLOSURE THESE ARE ALL FALSE- PLEASE DO NOT BELIEVE OR TRY ANY OF THESE CURES!

• Laundry detergent. Yep. Good old Tide. The cure? Strip all clothes, then hand wash with vinegar, baking soda, & essential oils. Leave in sun to dry. After a few months all autistic related traits will magically vanish.
• Pesticides. Cure? Only feed him food that you can grow yourself or purchase from a local farm that doesn’t use pesticides. Limit meat consumption.
• Worms… or rather lack of. Yep. You read that right. The claim is that modern humans lead too healthy of a lifestyle, (that’s a first), and it’s killed the parasitic worms that kept our ancestors healthy. Hence why we are seeing an increase in modern-day ills.
• Saying Autism. I said the word “autism” in front of Everett and caused it.
• Pollutants. Multiple people have to told me I either live too close to an interstate or in too polluted areas.
• Cellphone Towers. Chem trails. The internet. Come on people, take off your tinfoil hats!
• God. Yep. Someone once told me that God made people autistic to teach other people compassion. Another said it was God’s punishment for leaving the church.
• Demons. Autism isn’t real, those behaviors are actually a sign of demonic possession.
• Endometriosis/Womb Deffects. I shouldn’t have been able to carry a child, and because I forced it with fertility treatments, Everett is now “defective.”
• Finger Length: The length of his fingers predicted his autism. (This one really had me scratching my head).
• Diet, Mental Health & Meds. I didn’t eat enough meat when pregnant. I ate too much meat when pregnant. I didn’t eat enough folic acid. Also in this same vein, my “toxic gut.” Taking antibiotics during pregnancy. Being depressed while pregnant.
• Hot Tubs: someone seriously asked me if I got into a hot tub when I was pregnant, because if I did, the heat “killed his genes” that prevent autism.
• Lyme Disease: I was asked if I tried getting Everett treatment for Lyme Disease, because they read somewhere that it also cured autism. (Newsflash: it doesn’t)
• Parents: I spoiled him too much, I didn’t spoil him enough. I was too caring. I wasn’t caring enough. We make too much money. We don’t make enough.
• Pregnancy: I got pregnant again, (with Finn), and my pregnancy hormones triggered a change in Everett.
• Wishing: I wanted my child to have a “trendy” diagnosis, so I sent autistic intentions towards him and he absorbed them.
• Air Conditioning: I kept the air conditioning too high when I was pregnant.
• And finally vaccines. This one deserves its own section.

VACCINES DON’T CAUSE AUTISM

I wrote a WHOLE BLOG about this when I was attacked by someone who believed this last fall (you can read it here). Here is just a small excerpt:

There is ZERO scientific evidence that vaccines cause autism. The one doctor, or should I say former doctor, that made this claim lost his license for his false allegations. Vaccines, in general, are the safest and most cost effective preventative treatment one can get. Also, what about the children with autism, seizures, and other horrible childhood illnesses that have never had a vaccine? What about the millions of people who have had vaccinations and have had no complications? Yes vaccine injuries have occurred, but it’s the minority, not the majority. And I repeat there is ZERO medical based evidence that vaccines cause autism!

I hope you got a few laughs in- I know I did! Autism isn’t caused by any of these things and autism isn’t something that needs “cured.” It simply is. It’s a part of our lives, but it isn’t our life. We are happy. We are healthy. Everett is just that, Everett. We don’t need or want a miracle cure, we just want him to be the amazing person he was made to be.

The post Your Child is Autistic Because… appeared first on Not So SuperMom VS Society.

“Let people help”. “Rely on friends and family”. “Don’t be shy to ask family members to help around the house”. This is the advice touted on every baby blog, in all of the pregnancy books and shouted from the rooftops by experienced moms. But what if you can’t?  

The end of my pregnancy and beginning of my daughter’s life hasn’t looked at all how I expected it to. Breastfeeding classes? Canceled. Mommy-and-me play groups? Nonexistent. Friends and family coming over to meet the baby and help around the house? Nothing but a fantasy. As thankful as I am to have had a healthy baby girl and an amazingly supportive partner, I still feel like COVID-19 stole this time from me. I’m still processing and mourning the loss of a time in my life that was supposed to be happy and exciting.

My stepmom planned a wonderful baby shower for me, with friends and family flying in from all over the country, that I never got to go to. I bought a dress for the pregnancy photoshoot that never got to happen. Gazing at our bundle of joy via ultrasound with my husband by my side ended up being me alone in a room with the technician, wearing a protective mask, trying to record a video of that dark screen on my iPhone to show my husband later. My mother-in-law hasn’t even met her grandchild for fear that she would bring the virus up with her from Florida.

Being pregnant and giving birth during a global pandemic has been one of the hardest experiences of my life. The social isolation alone was challenging, but to experience that with pregnancy and postpartum hormones on top of caring for a newborn for the first time seemed almost insurmountable. When hospitals started restricting visitors, I read story after story of women who were forced to give birth completely alone because the visitor policy didn’t allow their child’s other parent.

Whether I would elect to have a homebirth or have my husband unable to attend the birth of his first child was not a decision I ever envisioned having to make. Thankfully, I didn’t have to. What I did end up having to do was arrive in the hospital, after 24+ hours in labor, breathing through a piece of fabric.

Before I could get inside, I had to stop and get my temperature checked, knowing that if I “failed”, they would try to isolate my baby from me immediately after birth. The fear that they would try to take my baby from me and prevent skin-to-skin, breastfeeding and general motherhood immediately after birth brought me to tears on more than one occasion. Had I tested positive, I was prepared to insist they leave her with me or I would have to leave the hospital and birth somewhere else.

Again, I’m thankful it didn’t come to that.

Once inside, I couldn’t be taken to L&D until I had my COVID test results back. After having my upper nasal cavity assaulted by a lengthy Q-tip, I continued to labor in an emergency department hospital room with no access to pain medication. We were told that I could remove my mask after getting the all clear from the test, but that as soon as the baby came out of me, I had to put my mask back on. At the time, I remember feeling SO grateful that I didn’t have to push with the mask on my face, which isn’t something most mothers have to incorporate into their birth plan. My husband was told to wear a mask the entire time (though to be honest, we both kept forgetting to put it back on when people came in the room with everything we had going on). All of the nurses wore masks at all times. In fact, I saw a nurse in the hallway without a mask on and asked her if she had seen my nurse who had been helping me for days. It turns out she actually WAS my nurse (embarrassing), but I had no idea what she looked like because of the masks.

As if giving birth during a global pandemic wasn’t enough weight on my shoulders, our country simultaneously (finally) began stepping up against systemic racism. While we were in the hospital after birth, our plan was for my husband to run home to tend to our dog on the second day. However, rioting around the globe and within our city resulted in a curfew during my hospitalization, and if my husband left, he wouldn’t be permitted to come back into the hospital until the next morning when curfew was lifted.

Coming home from the hospital was more emotional than I envisioned. I was leaving the safety of on call lactation support and endlessly being able to ask the nurses “is this normal?”. I knew these resources, normally available to new moms after they leave via support groups and meetups, would not be available to me.

When I did find a lactation group still meeting in person, my husband and I debated if it was safe for me to go get some much-needed help getting my baby to latch. My internal monologue debated if I was a horrible mother for risking exposing my child or if I was a horrible mother for not getting the nursing help that I knew I needed to feed her well. It felt so lose-lose. Ultimately, I made the decision that I thought would best set up my daughter for lifelong success and got the help that I needed to nourish her little body.

After a few weeks of settling in and things starting to get easier, I started reading some more baby books again now that I had the time. When the first chapter of a new book started with an emphasis on accepting help from friends and family, I literally threw the book across the room and cried to myself. When my family tried to guilt me into traveling with the new baby or letting people come see her that hadn’t quarantined, I sobbed in the shower. I wasn’t having to choose which daycare to put my daughter in when returning to work, I had to choose whether I was a horrible parent for even considering putting her in daycare during this time or if I should give up my career that I love. If I didn’t have the support of my husband, I don’t know how I would have emotionally made it for this long (shout out to all the single parents – I cannot even fathom how awesome you are for surviving!).

But hey, it’s not all bad – at least I didn’t have a ton of strangers touching my stomach for the last 4 months of pregnancy! In all seriousness, living through this situation has taught me that I can handle a lot more than I thought I could. It also taught me that there are more ways than one to lean on my support system.

I sought out others going through what I was going through. I found a lot of solace in two reddit groups – one private group specifically for mothers due at the same time as me (every birth month has a private reddit bumpers group – I highly recommend you find yours!) as well as an open group for pregnant people during this time called CoronaBumpers. My husband and I may not have hands on help, but I know we have support day and night through a network of amazing friends and family, even if it is virtual.

Two months after she was born, I still don’t know if I’m doing things right. I have no idea if I would be learning tips and tricks from other mothers that would make raising her easier. I’m still feeling isolated and lonely, but when I’m feeling really overwhelmed, I take a whiff of that amazing new baby smell and I know we will get through it together.

-Abbi Hernandez, Ph.D.

7/24/2020

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My child is autistic.

There, I said it. I brought up the elephant in the room. I said the “A” word you whisper about, out loud. Yet when you say it out loud, I mentally cringe.
I wonder if I’ll ever get used to hearing someone else say it. If it will ever feel like less than a slap in the face or a slow turning knife in my gut. I wonder if catching it this early truly will help him become a functioning adult.

And I’m grieving.

I don’t care how many times people tell me autism success stories, I’m still mourning what could have been.
From the moment she receives a positive pregnancy test, a woman starts bonding with their unborn baby. She is the one who senses the flutters, kicks and jabs, as she is also the one who feels the morning sickness, sciatic nerve discomfort and for some, labor pains. In all essence, the woman is the one who knows the baby best. Dreams of the future are vivid for her from the moment she finds out that she’s having a baby. She makes up scenarios about the adventures they will go on and the amazing things they will accomplish.

What most parents of typical children don’t realize, is that no matter how much relief I get from a diagnosis, I still have to grieve the child of my dreams, and accept the child of my present. It’s a symbolic and complicated loss.

The sense of loss is complicated because the child is still present. In fact, nothing has really changed other than the confirmation of a suspected condition. The grief is real and it is further complicated with mixed emotions.

You are NEVER prepared for a diagnosis of autism.

It is painful to love so much, to want something so much, and not quite get it. It’s been frequently compared to grieving the actual loss of a child.
A parent typically goes through 7 stages after their child is given an official diagnosis:

1. Denial & Shock
2. Pain & Guilt
3. Anger
4. Depression
5. The Upward Turn
6. Working Through
7. Acceptance & Hope

I find myself rotating between steps 2 through 7 at any given time. And quite frankly, it sucks.

Evaluation Results

The staff seemed somewhat surprised my initial reaction was one of audible relief. It was as if they had expected me to break down in the conference room and cry. It was only later, when I was in my car, alone, that a swell of emotions rose within me and I felt overwhelmed — by anger, by an urgency to do something, by the jargon and acronyms of the special education world: functional performance, local education agency, IEP (individualized education program).
In reality, if there is ever a “good” autistic prognosis, Everett has it. He tested fairly normal for a kid his age, he is (mostly) friendly, somewhat verbal, and loving. He just doesn’t understand how to apply everything going on correctly. This guarantees him a spot for free therapy and an IEP. This also means our insurance should actually cover more services as well.

I’m learning that when your child is “on the spectrum,” as the lingo goes, you’re on the spectrum with them, a spectrum of good days and bad, progress and setbacks, joy and frustration. And emotions. All the emotions.

While today I may be grieving, I know it won’t be long until things get better. Like those unexpected traits, autism is just one more facet of Everett — not the defining one….even if it sounds a little scary.

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