Living with endometriosis: The lessons in waiting- Part I

Today I got the bad news.

The diagnosis was Endometriosis. And it sucked to hear.

I wish there was a prettier way of putting it–a more eloquent way of describing to you how it felt to hear the doctor say it. But there isn’t. It just plain sucked.

I’m not keeping a blog to just document the squeaky-clean pretty parts of our life together as a young family. I’m keeping a blog called ALL our Lemmony things. And this is part of it. The big, painful, why-is-life-so hard trials. *Big surprise, huh?*

I had a feeling something was wrong way back when we started trying for a baby. I don’t know why, but if you’re reading this (and you’re a woman) you probably know what I mean by somehow just knowing when something is off. For me, the red flags were everywhere, including excruciating cramps that even landed me in the hospital at one point. I seriously thought I was going to die. Or give birth. But I wasn’t pregnant, so I had all bets on that first one.

That, and so many other red flags (irregular cycles, abdominal pain, headaches) were things I pushed to the back burner because I was focused on having a baby. And by golly, nothing was going to stop me.

Until today.

My legs hung over the high examination table, hands wringing together nervously while the doctor took off his glasses and looked me straight in the eye. He didn’t dance around the subject, but the soft tone of his voice–the kind of voice that people use at funerals or during break ups– scared me more than anything. He told me that it’s clear to him that I have a severe case of Endometriosis. He said a few times he isn’t saying I can’t have kids. It’ll just be much harder and it might take weeks…months…or years…of fertility treatments and visits to specialists. There’s no saying what kind of timeframe it’ll be.

I instantly felt like a broken woman.

This isn’t meant to insult or hurt those who were diagnosed with this same thing. Actually, this is just my way of connecting to those women who might know exactly how it feels to stare into a doctor’s eyes and try not to cry. Maybe someone out there (I just know it) knows how it feels to get angry with life, upset at her own body, and grief-stricken for a faceless, unborn child all at the same time. Maybe that woman has made it through. Maybe she’s still waiting. Maybe she has it MUCH worse than me and knows for a fact that she can’t bear children at all. Maybe she’s exactly where I’m at. I don’t know.

But in that moment, on the table, swallowing down tears, all I know is I felt alone.

All my life I’ve been able to do anything I set my mind to. But this one thing. This thing that a woman should be able to do. That one thing is going to be hard for me to do at best. I asked the doctor several times if it’s my fault or if I’ve done something to cause this. But he said women who have Endometriosis have had it since inside the womb. That was another dagger. All my life I’ve had this condition, this hindrance to bringing spirit children into the world, and I had no idea? Why me? Such a selfish question loaded with a million unanswerable components, but it still came to mind over and over.

But in the back of my mind, I kept reminding myself of the truthfulness of the gospel. The promises of the Lord. The loving ways of God.

I know I’m going to have children someday. I feel them and I already know their names (luckily Matt helped me with most and agreed on the ones I pre-planned 😉 )  I know that this is a trial that I was given to face and that there can be lessons in waiting. And that someday when I hold my baby–no matter if it’s a year from now or seven years from now–it’ll feel worth it.

But right now, my perspective doesn’t reach that far. I see the exam table. My pink toes dangling off it. My blurred vision because of tears. And my empty, unable-to-work-correctly stomach. But I’m trying to look beyond. There is a lesson in all things–an eternal principle I’m going to have to learn. Who knows? Maybe that lesson will be something I need to pass down to my children someday when they’re waiting for something they yearn for just as much as I yearned for them.

Questions, so many questions.

But for now, I find solace in my sweet husband who makes me laugh so the tears can dry, who genuinely knows that he’ll be a dad, and who reminds me that some blessings come soon and some come late, but they’ll always come (That statement was originally from this talk by Elder Holland by the way–he’s awesome) For now I find solace in my big family on both mine and Matt’s side, and my friends who comfort me from hundreds of miles away through texts and phone calls. I find solace in our blog, where I can connect with other sisters in waiting–or sisters who live lives filled with trials of their own, but they simply don’t give up.

I hope to be one of those.

19 thoughts on “Living with endometriosis: The lessons in waiting- Part I

  1. I was an adopted child. My birth mother held me in her arms for a couple days then my mother held me in her arms for a lifetime. They will both be with me through eternity. One gave me life the other gave me a life.

    1. Thank you for sharing that, Patricia. I wouldn’t be against adopting at all–I’ve actually always had that desire to do adopt sometime down the road. That was a beautiful way of saying it, too. 🙂

  2. I had severe endometriosis. We focused on that (2 laparoscopies) and on taming my over-reactive immune system, only to run out of time (I went through early menopause by 34; I hadn’ t married till 30, then was focused to much on the endo etc.) Endo does NOT close doors absolutely. But menopause does. However, I now am blessed by two amazing children through the miracle of adoption. I’m so very lucky to be a mom because of them! I don’t know how you will receive your children, but I pray that you will be blessed with them, sooner than later! Hugs to you.

    1. What a sweet story, Lisa! Thanks so much for telling me that. It’s true that no matter how you receive your children, you still reap the same joy of being a mom. I can’t wait for that. Hugs back!

  3. I hear us! As a young couple trying, I still have to come back tears on a regular basis. Some days it’s just hard to hold onto the hope but it’s also hard to let go of it. But as I tell myself daily, after the hardest trials come the best blessings so just hang in there!

    (And if you ever need someone to relate to there are lots of us willing to listen and that understand the emotions and struggles that you’re going through.)

    1. Thank you for your simple reminder of hope. we don’t know each other but I understand your feelings and thoughts…some days I still struggle with those same thoughts and wonder what I did or what I could possibly be learning that could only be learned through this trial. But then I am reminded that everything will be okay. That if I keep my faith burning and my chin up my life will be full of miracles big and small. So here’s to waiting for our miracles!

      A book I found comforting (even though I still have the possibility of someday being able to have a kid…) was Infertility: help, hope, and healing by Kerstin Daynes
      From an LDS perspective it uses scripture and words of prophets which I found nice…

  4. I just stumbled across your blog and I really like it 🙂 You definitely demonstrate how blogging can share the gospel.

    I have been married for 5 1/2 years. Lots of “girl” problems, no luck with conceiving. After multiple doctors appointments where the general practitioners have been stumped by what’s going on with me and multiple referrals to specialists my husband and I finally realized that we didn’t want to be defined by our “infertility”. It’s been a great 5 years. Just us. Plenty of time to devote to work, travel, forging an incredibly strong marriage, hobbies, etc. But we want a family because we both think we’re cut out to be excellent parents 😉 I can’t say it’s been easy… and this has mostly been because of the intrusive questions of others. Questions like “Are you trying to have kids?” (excuse me… but when is it appropriate to ask about someone’s sex life??? especially at church??? or if you barely know a person and you’re standing in the grocery store check out line) or “Don’t you want kids” (what? what does this mean? a lack of children in the home of a happily married couple is usually not because they are children haters… 😉 or “How long have you been married” (apparently people walk around with calendars in their heads that calculate the acceptable length of time that you can be married and still be childless or that calculate the length of marriage needed until the out-pops-a-baby moment takes place). Argh. People are people and by nature are nosey. We’ve tried not let people that ask questions like this get the best of us. We’ve found humor helps and there have been times when I’ve become a little snarky. Simply stating, “My career is too important” when asked if I want kids usually hushes people.

    I totally know what you mean by just knowing something isn’t right. I have long felt that way. My body is otherwise healthy and strong but in female department my plumbing doesn’t work correctly.

    When we got engaged we both felt strongly we needed to start a savings account for our future family, specifically to build our family through adoption. I think a lot of our family and friends were like “what?” and “why?” We couldn’t explain it, we just felt we needed to do so. We were both out of college and into our careers when we got married and years of being single made a gift registry for household items seem silly. So we told people if they felt like they needed to give us something in honor of our marriage we would appreciate small donations into our adoption savings account. People were very generous and we took that chunk and kept in safe in savings. Glad we did. We now have an infant son! When the timing was right, Heavenly Father directed us on the path we needed to take and that path was adoption.

    I have yet to follow through on any of the referrals to a specialist. I can’t explain it other than I don’t feel like I will get the answers I’m looking for and if we’re going to exhaust ourselves emotionally and financially in building our family we feel strongly about adoption vs. fertility treatments. Me saying this is to not say I don’t think fertility treatments are important parts of others’ journeys because they are for many couples. We just don’t feel like it is a part of our journey, at least not at this point in time.

    Adoption is an eternal principle of the gospel. We have come to peace with the fact that we may never bear children through pregnancy and delivery. All is well with this because Heavenly Father has placed His trust in us to raise a choice spirit that was sent to Earth in need of an Earthly father and mother to find him and bring him home.

    My husband and I both traveled quite a bit when we were single and spent time in multiple orphanages in the 3rd world. There are so many children around the world, including right here in the US, who have no one to call mom and dad. Children are a treasure. Sadly, they are time-sensitive… they grow so fast. Many miss out on the opportunity to ever be someones child. My husband and I have always made it a point to be a friendly face in the neighborhood. The kids around us know they are always welcome in our home. We have also had one experience with the foster care system and even though it left our hearts shattered, we know we helped a child know she is loved.

    These are just some of my ramblings. God bless you and your husband. Life is sweet. Families can built in so many different ways. Don’t rule out adoption. And, if people get a little too nosey and ask, “Oh, did you adopt because you couldn’t have your own children?” , pay them no mind. They obviously don’t understand a very important, very eternal part of the restored Gospel of Jesus Christ.

  5. You are not alone. I have Endometriosis too and it DOES suck. There is no other word for it. My husband and I struggled to have children for 2 years. I had 2 surgeries and a heckava lot of infertility medication. It’s not an easy road by any means but with our Heavenly Father all things are possible. You will get through this! HUGS!

  6. I am sorry for your news and I applaud you for sharing such personal information it in a public space like this. I saw one of the comments to your previous topic and applaud your direct honest response to what was in my opinion out of line and off topic. A very dear sweet member of my family has endometriosis. Her beautiful miracle baby started pre-school this fall.
    I stumbled onto your post a week or so ago when your topic was “The Mormon feminist protest: And why I won’t be there”. As someone who was raised in the Mormon religion I find the idea that the church could change and truly be open and welcome to be compelling. But after receiving literally hundreds of emails since I signed up to your blog I decided the tone of the conversation (for me at least) was so negative, hateful, hurtful that it is unproductive to continue to follow the comments.
    I should also add that today as I was surfing from the comments in your blog, I clicked through a link and landed upon the church policy handbook where I read “When the probability of a successful marriage is unlikely due to age or other circumstances, the unmarried parents should be counseled to work with LDS Family Services to place the child for adoption, providing an opportunity for the baby to be sealed to temple-worthy parents.”
    The combination of these two issues sent me back to your website with the intent to figure out how to stop the emails, but read this most recent post and comments and feel compelled to post my own story. I am glad families who are given the opportunity to adopt do so. I so often wish our country’s politics were not so focused on either pro-life or pro-choice but would give the same amount of public attention to the third option of adoption.
    I was a young teenager in a small, mostly Mormon community and pregnant. Everywhere I turned I was judged and branded because of the visibility of what those in the community deemed to be a sin. The sin, of course, was being pregnant. No one, bishop included, had any personal knowledge of the circumstances that caused the pregnancy. Even though decades have passed, some continue to believe a woman can control, through sheer will, whether or not she becomes pregnant. So having just read the church policy on this circumstance, I thought my head was going to explode. I spent the afternoon so full of self-doubt. I have told myself for decades that the decision to give this child up for adoption was my decision. But now, I wonder—I was so young, impressionable and had little access to resources. Was I given a choice? Was it the community peer pressure? I can’t remember clearly. It has been decades and I am still shocked at the extreme emotional reaction I have from time to time when something triggers me back to that period of my life. I have a wonderful life today. I a married to the man of my dreams. His family loves me, and my family loves him but we do not have children. So basically I am saying there is no good reason to continue to be so sad about this short period of time in my long-ago past.
    I have also had the good fortune over the years to occasionally get a phone call from some young, unmarried woman who finds herself pregnant. The only advice I ever give is two things. #1-Babies are Blessings no matter the circumstances of how they arrive. #2-No matter what decision you choose to make you will live with that decision for the rest of your life. There are three choices and it is important to understand that regardless of the choice, you will live with the choice for the rest of your life. I share my story and the happiness and success I enjoy today. I encourage them to seek others to tell their story. I encourage them to seek out resources so they can learn and understand all of their options. For me, the pain of the decision has never diminished and because I have counseled a few other young women and watched them over the years I know the paths not chosen were also not without trials.
    My message to the women who are posting comments to this blog is to please remember that while all babies are blessings and for you, your particular child is a particularly special blessing, that blessing came to you from another women whose experience might differ from yours quite markedly. Do not judge her or those like her in either word, deed or body language. You were not present when that child was conceived. God may have chosen her to deliver to you your blessing. And, would you have it any other way? As well, take advantage of the group-think and peer pressure tactic and do not allow your neighbor, your sister, the person sitting next to you in the pews, your bishop or anyone else to judge her either.

    1. Thank you so much for sharing your story and for caring enough to let me, and other readers, know where you’ve come from and the wisdom you’ve gained by what you’ve gone through. That is truly comforting! Also, I’m sorry about the hundreds of comments. My husband was complaining about the same thing! haha There’s definitely a way to deactivate getting notices about comments, but I hope you continue to follow my blog! I’m appreciative of all you said and for having you as a reader. God bless!

  7. Oh you sweet girl, my heart hurts for you. I found your blog through another blog and even before this post, I kept thinking, “she just gets it. ” one of those bad things to good people kind of thing. While I don’t know if I’m going to struggle with infertility down the road, both my sisters and their husbands have. It is such a hard trial, and I only saw it secondhand. Because of them I got involved with an organization called Pound the Pavement for Parenthood. Organizing 5k races to sponsor couples and raise funds for fertility treatments. If nothing else, they have created a community so people struggling with this know they are not alone. (And there is a real honesty there for those hard days when you just need a good cry and some Oreos.) I think you’re incredible and very brave for talking about it. Wherever this journey takes you two, know I’m cheering for you!


  8. I also have endometriosis and have heard a grim diagnosis with my own pink toes hanging over that same exam table. We heard all those intrusive questions as well. Lovely, no? We fought this monster head on with fertility treatments. Seven IUI’s, a laparoscopy, tests, tests and more tests. We found an IVF clinic with a refund program. We’d get 90% of our money back if it didn’t work. We figured we would put that 90% towards adoption. But, after nine years of marriage, we were blessed with a miracle baby boy. He is eleven now and is still pure joy. He has a 9 year old brother and 8 year old sister, too. And we didn’t have to do a thing for them, medically speaking. They were free! :). I write to give you hope. I will pray for you as well. Patience runs thin, I get that. Oh, do I get that!

  9. I got diagnosed 4 weeks ago. I am so grateful to read this right now, today, when I feel so completely defeated. Would love to be in contact with someone like you who knows the physical, emotional and spiritual pain from this condition.

  10. I stumbled across your blog today and this post stood out to me. I was diagnosed with endometriosis in November 2008 and had it removed. 13 months later I married my husband. Because of the endometriosis and my history of ovarian cysts we were told it would take years… so we didn’t prevent a baby from coming and a month later I found out I was pregnant.
    Now my baby is 3 and we have been trying for #2 for 14 months… nothing… I know your pain. I know the feeling of feeling broken and wanting something so bad. I am keep you in my prayers. Thank you for referring to Elder Holland’s talk… I re-read it and cried. It was just what I needed. Keep your faith 🙂

  11. Hey Kayla,

    I’m that girl, who, a few weeks ago talked about yearning to know more about the LDS church and having “very strong feelings” for it — just wanted to remind you of who I am 🙂

    Anyways, I think I know exactly how you feel, or at least something VERY similar. While I don’t have endometriosis, I was diagnosed with Ovarian Cancer nearly 10 years ago, when I was only 16 years of age. I can tell you I went through EVERY emotion possible — it was like a bipolar wave of hating my body, wondering “why me”, mourning the fact that I couldn’t ever have biological children… and then sometimes, I’d be riding high on the wave of positivity feeling the exact opposite of all the negative feelings I just mentioned.

    Like you (?), I felt my body failed me. I wondered why I had to have cancer — what I was “one of them” — you know the ones that become pale-skinned and puffed-up from chemo and other related treatments. And even if I looked “normal” I still wasn’t like other girls my age. Surgeons performed a “radical oophorectomy”, meaning they removed both of my ovaries during surgery.

    Now, prior to surgery I actually DID NOT KNOW I had cancer. Apparently the doctors did, but those exact words were never spoken to me — or if they were, I was hazy and never understood what they were saying. In any event, due to a ruptured tumour and slightly metastasized (spreading) cancer, they had to take both ovaries. There was never a choice (and if there was, I probably would have made the decision the surgeons did).

    I guess what I’m trying to say is that infertility is hard, I get it, I know it, I feel your pain. Even ten years later, it’s still hard for me to wrap my head around. Sometimes I forget I am different, and that I can’t have biological children of my own. And like your husband, my husband-to-be is there for me, too – and he knows he will become a dad. We talk about how exciting it will be, how we will raise our children, what their names will be, etc. Isn’t it nice to have such amazing, supportive spouses who will share in our joy and happiness?

    In the words of Sir Winston Churchill, “Never, never, never give up”.

  12. Hey. My husband and I tried to conceive for over a year and everyone told us we were fine but it would take time. I worked with a naturopath to regulate my cycles and she repeatedly reassured me that we were “so close.” I also felt, like you, that something wasn’t right. I felt like my body didn’t have the “magic” necessary to make a baby. We consulted a fertility doctor and found nothing wrong. We had two early miscarriages. My gynaecologist offered me an exploratory laporoscopy to investigate for endometriosis and when I woke up he told me he had found the endo, and had removed most of it during the procedure. Three months later, while preparing to start IUI’s, we found out we were pregnant. All it took (after the surgery) was some ovulation predictor sticks and Gods plan. In my case, being diagnosed with Endometriosis was the one major thing that brought me CLOSER to becoming a mum. I pray you have the same experience.

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