My Endometriosis Story

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In honor of Endometriosis Awareness Month, I wanted to share my story of how endometriosis has affected my life.

If you are unfamiliar with the disease, you can learn about it here.

I started getting really painful periods in high school, so bad that I would need to stay home for at least one day at the start of my period, clutching a heating pad while curled up in a ball on the couch. Looking back, that was Big Clue #1 that something wasn’t quite right. But, like a lot of women, I thought it was normal, and doctors told me it was normal. It was a right of passage, or something. Pop some Pamprin and suck it up! Other than the pain, my periods were normal. I didn’t track them, but I always knew when to expect good old Aunt Flow and how many days she would stick around.

In college, a doctor recommended the birth control pill to help alleviate my cramps. She explained that the bleeding I would have on the pill wouldn’t be a real period, just withdrawal from the hormone, and so my pain would be much improved, maybe even absent. It worked! I still had some cramping, but nothing like before.

From that point on, I was always on some form of oral birth control. Always. At some point in my college career, I read an article that suggested there was no need to have a “period” while on birth control, that the original inventors actually designed the pill for continuous use. However, when it came to marketing it, not getting a period was apparently too unnatural for a lot of women, and I think the Catholic church was involved somehow (I don’t know, but I’m sure you could Google it to find out), so they added a week of non-hormone sugar pills for every 3 weeks of hormone, to mimic the average 28 day cycle. But, there was no biological reason a woman needed to bleed every 28 days. I took this information to my doctor and said I wanted to take the pill continuously so I wouldn’t get a period.

Over the next 10 years or so, I took the pill continuously, with just a few breaks here and there (mostly to appease skeptical doctors who believed a woman should bleed, at least some of the time). As promised by that first doctor, I rarely ever had cramps that bothered me as much as the ones pre-pill.

Fast-forward to the recent past, when I finally settled down and began attempting to reproduce. The first thing I did when we decided to try to get pregnant was stop taking the pill. It took a few months for my body to get the memo (89 days, to be exact), but I finally got a period. It wasn’t the Mother of All Periods as some might believe… it was just a regular period, with light days and heavy days, and a great deal of knock-me-on-my ass cramping. A few short months after that, we had our first positive pregnancy test. Unfortunately, our joy didn’t last, and I was diagnosed with a missed miscarriage just shy of 12 weeks. (You can go back to the beginning of my blog for more details, if you’re interested.)

Once I recovered from the miscarriage, we tried again, to no avail. Each month, my period was difficult to predict. The only thing I knew to expect was the pain. Once again, just like in high school, I was doubled over in pain for at least one day during my period. But I couldn’t go back on the pill, not if I wanted to get pregnant again. So, I suffered. A year after my miscarriage, I still wasn’t pregnant, so my OB began some testing and put me on Clomid. (Note: In hindsight, that was a terrible idea. Only an RE should be prescribing Clomid. But that’s a topic for another post.) After just two cycles, it was clear Clomid was not right for me. It caused large ovarian cysts, the first of which burst and sent me to the ER. The second, six weeks later, was the impetus for the laparoscopy that lead to my diagnosis. The plan was to drain the cyst, and while in there, take a look around to see if there was any visible reason I wasn’t getting pregnant.

Low and behold, endometriosis! Really, really bad endometriosis. My fallopian tubes were essentially fused to my uterus by endometrial adhesions. The surgeon had to remove adhesions from my bowel, bladder, intestines…. It’s likely the endo was the reason for my painful bowel movements.

Having endometriosis doesn’t necessarily make someone infertile. However, it certainly doesn’t help. First of all, if any eggs were being released, they were probably having a tough time making it to my uterus, due to my fallopian tubes being stuck to the uterus. Not to mention, my eggs were being exposed to the toxic environment created by all that endometrial tissue scattered around my pelvic cavity. Indeed, I also had low AMH (basically low egg reserve), which was also a factor in my infertility. However, it was the ticking time bomb endometriosis that lead us down the path to IVF, because it would bypass all the obstacles posed by damage from the endo.

Our first IVF cycle was a huge success, with 9 eggs retrieved and 9 fertilized. Two embryos were transferred and 3 were frozen for later. One of those transferred became my daughter. When you look at how successful IVF was for us, it’s hard not to believe that the endometriosis was a significant factor in my infertility, for as soon as we took it out of the equation, I was able to achieve and maintain a pregnancy.


What I find fascinating is how the disease seems to affect every person differently. Some women with only moderate endometriosis suffer a great deal of pain, not only once a month during menstruation, but every day. Some with severe endometriosis have very little pain or pain only during a period. For some, endometriosis causes (or plays a significant role in) infertility; for others, it doesn’t affect fertility at all. For me, severe endometriosis caused severe pain just once a month. Compared to some, I got off lucky. I read story after story about how endometriosis has significantly reduced the quality of life for some women, who suffer from pain every day. Every day. And the pain isn’t always localized to the pelvic region. Endo pain can pop up literally anywhere in the body. Many women wouldn’t even make the connection if not for their own diligent research and connecting with others online.

It astonishes me how much we don’t know about endometriosis. It takes forever and a day to get a diagnosis for many women, and the only way to diagnosis it is through laparoscopy. What disturbs me most is that the best “cure” at the moment is hysterectomy. It’s devastating, especially if you desire to have children. Even less is known about endometriosis and infertility. For a disease that affects an estimated 176 million women worldwide, that’s simply not acceptable. I’m not the activist type, so I have no idea what to do about it, except to educate others about it. I’m a big believer in being your own medical advocate, so if you think you may have endometriosis, do not hesitate to see your doctor about it right away and don’t stop pushing for answers until you are satisfied. Educate yourself through websites like Endometriosis.org. Follow blogs by women who suffer with endo. Share your story on your blog, or, if you don’t have a blog, share your story in the comments section.

6 Months & Making Plans

First, a baby update: Clara turned 6 months old yesterday. Six whole months! It’s unbelievable to me.

Likes

  • Squealing at the top of her lungs, especially when I match her squeal for squeal. It’s quite a fun game!
  • Jumping in her ExerSaucer
  • Grabbing ALL THE THINGS, ALL THE TIME
  • Putting all the things she grabs immediately into her mouth
  • Tugging on dad’s beard
  • Reading books
  • Crinkly toys

Dislikes

  • Getting dressed
  • Being strapped into her car seat
  • Sitting up
  • Not being able to put my iPhone into her mouth
  • Strangers

She hasn’t had her 6 month check up yet, so I don’t know exactly how big she is, but I would estimate about 16-17 pounds and maybe 25 inches long (that’s a total guess).

Food

I’m still breastfeeding, and pumping while at work. It’s kind of a pain, especially when I travel, but I know it won’t be forever. In fact, I plan to wean at 12 months, if she hasn’t weaned herself before then. We have introduced solids. Our original plan was to do baby-lead weaning, but Clara doesn’t have much patience for learning to feed herself. She actually prefers that we put food directly into her mouth (which goes against baby-lead weaning). Instead, we’re doing a sort of hybrid. We give her whole foods from our meals, along with baby cereal and purees. Her favorites are strips of cooked red bell pepper, baked sweet potato fries, oatmeal, and peaches.

Sleep

The first thing everyone asks us is, “How is she sleeping?” The answer always varies, because sometimes it’s great and sometimes it’s not so great. But it’s mostly pretty good. Between teething, growth spurts, learning new skills, and eating new foods, it’s a wonder she doesn’t have more bad nights.

Milestones

So far, I think she’s hit all the milestones we would expect. She rolls over both ways easily, and can sit up for short periods unassisted. She doesn’t crawl or scoot yet, but she has learned how to rotate on her stomach. She can stand with help, but she’d rather be jumping. She LOVES to “talk,” especially when I pick her up from daycare.

I could go on and on, but I don’t want to bore you. In a nutshell, Clara is awesome and things are going as well as I could hope!


The Best Laid Plans

It may be premature to talk about this, but M and I made a big decision recently. We decided we would try for baby #2 starting in August (when Clara will be a year old). We will try naturally (I can barely type that without laughing) until the spring of 2016, when we will attempt FET with our frozen embryos. Even though it’s a whole six months away, just thinking about trying naturally brings up a whole host of emotions, most of which make me want to vomit. I think I will have to force myself to not think of it as trying at all, but it won’t be easy.

Reblog: When Postpartum Depression isn’t Depression

This post from Alicia at SmyrnaParent.com really resonated with me. While my experience has not been as extreme as hers, I can definitely relate to her fears. Most importantly, I want to draw attention to the fact that postpartum depression isn’t always depression. It can be anxiety, too. It’s called Perinatal Mood and Anxiety Disorder. I think many of us who experienced infertility before having our babies can relate to this.

Our baby had proven herself a fighter every step of the way. But I couldn’t see it like that. In my mind, I imagined a figurative Grim Reaper hiding in the shadows, determined to finally take the baby who wasn’t supposed to be here.

Read her full post “When Postpartum Depression isn’t Depression.”

(Never Say) Never Give Up

Kitten:

A great piece on how “Never give up” can do more harm than good, especially when it comes to infertility.

Originally posted on Fox In the Hen House:

Never give up.

This is a phrase commonly used when a person is struggling in life or fighting an illness.

Once again, this is a post that came about because of a specific event but is actually a recurring theme in the infertility world. So while the specific event led to me actually writing this post, this post is not solely about that event or an attack on that person who most recently said that phrase. There’s been enough fighting on Twitter about this already I don’t care to encourage more of it. Which is why I thought perhaps more than 140 characters were warranted on the topic. Also, please note that this post has been sitting in drafts for MONTHS. I was only reminded that it was still sitting there because of a recent post on the very same topic.

Never give up.

If you have not attained…

View original 594 more words

Some Updates

I want to thank everyone for their support after my last post. It feels good to know that I’m not alone in how I feel and the thoughts I have now that I’m “parenting after infertility.” I’m happy to report that things have calmed down since that post. I don’t feel as though I’m living in an X-Files episode anymore, though I do still have the occasional panicky moment about losing Clara and/or my husband. I think it’s still in the range of normal, though. I mean, doesn’t everyone who loves someone fear losing them? It’s not a fear that consumes me or keeps me from enjoying my life. It’s just one of those things that sometimes crosses my mind.

Anyway… on to other things.

Back in October, I wrote about my father-in-law and how he seems to be suffering from some undiagnosed mental illness. I don’t have all the facts, but I guess he’s seeing a therapist, though it sounds more like a 12-step program to me. One of his assignments was to call me and my husband to apologize for the horrible text messages he sent to us. It sounded scripted, which I know doesn’t automatically mean it’s not sincere, but I just couldn’t accept it. There was something in how he phrased it that made me he still doesn’t believe he did anything wrong. I don’t know where things stand at the moment, only that I dread our next face to face visit, which happens in about 10 days. I don’t know for sure if he will be there or not.

Clara is doing very well. Growing like a weed and changing every day. She turned four months old on Christmas day. It’s amazing to see how far she has come in just four months, not only physically, but how she has developed a distinct personality. We’re currently struggling with a growth spurt and sleep regression, which wouldn’t be so bad except I’ve been sick with a horrible head cold for two weeks now. While I love our one-on-one time, I wouldn’t mind a little less of it in the middle of the night. She also has a terrible case of thrush on her neck, which, while I understand it’s largely out of my control, still makes me feel like a horrible mother.

A few weeks ago we received a letter telling us that our remaining embryos were transferred from our local clinic to long-term storage. Just another quiet reminder that this whole infertility thing never goes away.

12 Weeks Later, It’s Still Not Entirely Real

I’ve been having this awful recurring daydream that Clara isn’t real, that she died or I miscarried, and I completely invented the last 3 months in my head as a way to deal with the grief. It happens in fiction, but is it something that could happen in real life? I just can’t shake the feeling that I’ll suddenly be faced with a reality in which Clara never existed.

(Oh, by the way, that’s her name: Clara. I suddenly feel the need to type her name.)

Does this happen to anyone else? Just yesterday, as I was driving to an appointment on my lunch hour, I was suddenly afraid to look in the back seat, for fear I wouldn’t see her car seat, blanket, or any of the other random baby items that always end up back there. I thought, What if I look and it’s not there? What would I do? Call my husband, frantic, only to be told (reminded) that we have no baby? What if I show up at daycare only to find she’s not there, because she doesn’t exist? My mind delves even further into the abyss: What if this happens every day, and I have some weird form of amnesia, so my husband has to remind me about it all the time? What if I’m bat-shit crazy?

Is this normal? A form of post partum depression? It’s not constant, and it doesn’t interfere with my daily life, though it is a daily thought.

I know the root of the problem is in my history of loss and infertility. It doesn’t help that today is the 3rd anniversary of my first baby’s due date. But that doesn’t really tell me whether these thoughts are normal or if I should start seeing my therapist again. Do “normal” (non-loss, non-IF) moms go through something like this?

2 Months Later

Has it really been two months already? Has it only been two months? Any given day, I go back and forth between the two many, many times. Everyone keeps telling me to savor these early days and weeks, because before I know, she will be graduating from college. It’s true, part of me is a little sad that Little Miss has outgrown her newborn clothes and diapers. But another part of me can’t wait until she can sit up on her own, crawl, walk, drive…. I can’t say exactly why I’m so eager for her to grow up. I’m certainly not in a hurry to get older myself!

At the same time, I’m already getting anxious about going back to work and putting C in daycare full time. I worry about how long I’ll be able to keep breastfeeding, whether she will get enough attention at daycare, and how I’ll be able to focus on work when my baby is spending the majority of her waking hours with someone who is not me. I know everything will be just fine. I know it, but it doesn’t stop the worry.

Aside from worrying about things I can’t control, things which won’t even happen for another few weeks, things are going amazingly well. I recovered quickly from my c-section, and breastfeeding is going well. (I had some awful cracked nipples for a few weeks, which made me dread each feeding, but once I healed, it became an enjoyable bonding time for us.) I don’t mind not leaving the house for days at a time (I’m a homebody), but I do enjoy getting out once in a while to run errands with C or have dinner with M.

Not every day is unicorns and rainbows, of course. We both have bad days, especially around growth spurts. But, overall, I couldn’t ask for a better experience.

Getting to Know Little Miss

Likes  Eating, sleeping, lying on her changing table, baths, swinging, dancing, The Beatles, light fixtures, being held to look around over my shoulder

Dislikes  The act of swaddling (she loves it once she settles in), being put to sleep, car seat, not being held 24/7, pacifiers

She lost a bit of weight after birth, but with frequent feedings, she gained it back in less than two weeks, without having to supplement. Now she’s growing like a weed and hitting all the milestones right on time!

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Some Stuff I’ve Learned

Do NOT underestimate the importance of a good latch when breastfeeding. I could have saved myself a great deal of pain had I worked harder on it.

Swaddling is essential to a good night’s sleep. Swaddle Me and Halo swaddle sacks are awesome!

You can’t always sleep when baby sleeps, but you should at least half of the time.

There’s no shame in asking your mom to do your laundry, wash your dishes, or clean your bathroom.

The pain of infertility never goes away, even when you’re snuggling your baby. Pregnancy announcements from fertiles still hurt like hell.

I’m really looking forward to the holidays. This is the first year in a long time that I’ve been able to say that!