Endometriosis & Pregnancy
My partner and I have been together for six years. In this time, we've lost two children. I have a lengthy story with a couple of health issues to go along. This is my story on how I’ve dealt, what caused the losses and what I used in order to come through.
At fifteen years old, I began experiencing severe abdominal pain that became more and more frequent. At least two weeks of each month I was totally out of it, in so much pain that I spent half of every single month in a dark bedroom, only leaving when necessary.
After a year of that, I developed anxiety -- knowing the pain was going to happen after only a small handful of green beans or fries was enough to send me into a panic-attack frenzy. Simply eating a meal became a task. Who wants to eat when you'll most definitely be sick afterward?
So add a diagnosis of anorexia to the list of what at this point was anxiety and "unknown reason for severe abdominal pain, especially during menstrual cycles." The crazy thing was, I was not anorexic! Not by choice anyway. What I wouldn't have given to be able to eat at all those buffets we visited on family outings. Or be involved in anything people my age were. The diagnosis of anorexia was basically just an automatic assumption by a doctor looking at a 70 pound girl and not realizing that she truly did want to eat!
Eventually, my partner and I began researching my symptoms. We'd spend hours with me lying down and reading all sorts of medical books. We came to the conclusion in 2010 that my problem was either 1. endometriosis or 2. IBS -- the lovely syndrome where the bowel is in an unhappy state, hence the name irritable bowel syndrome. Not pretty! In fact, when we came to realize these two things had to be what I was suffering from, I was humiliated.
Endometriosis apparently sounds like a sexually transmitted disease to those uneducated. Yes, I've had someone actually think that I had an STD when told them. Not to mention, it's a disease that has to do with the female reproductive system, mostly the uterus. Another thing that made me scared was when someone would ask "why are you so sick?" What would I say? "I have a disease in my uterus?" And then, when people did keep on wanting an explanation, you’re stuck stuttering, staring down at your feet and explaining the actions of your uterus and how the lining grows where it does. If that didn't make me feel crappy, it did the person asking for an explanation. Most people say "Ew! I wish I never asked."
And forget telling anybody I had IBS. That was not an option. Neither was any kind of treatment because I had no insurance and knew nothing about going to a doctor. I'd been to the emergency room twice with these problems with no luck. It wasn't until a year later, in May of 2011 that I was doctor-diagnosed.
Getting To The Root Of The Cause
After discovering that there was little possibility my condition was anything other than one or both, I went to yet another doctor and said "Look, I know I have one or the other, so I don't want another 10 pap smears only to be told I have a tilted cervix." One more visit later and I was having surgery for endometriosis.
That was good and successful enough, but unfortunately, not soon enough. The same year my partner and I diagnosed me, I became pregnant for the first time. This was far before my surgery. I had heard people say pregnancy "cures" endometriosis. In fact, during the time I was suffering and had self-diagnosed, my twin was pregnant. During a visit with her mid-wife, she brought up my certainty of having endometriosis. Her mid-wife told her that the best advice for me is to get pregnant! I said that is ridiculous to become pregnant only to feel better, and not to mention, it is a myth that pregnancy cures endometriosis. It's true that some people, especially in minor cases, do feel relief while pregnant, but it does not cure it. So despite how badly my partner and I did want a child, I was not willing to just for nine months of relief. That's not to say that I wasn't ecstatic when I found out I was pregnant.
The first couple months went smooth as ever. I had intense cravings and developed a love for Asian chicken like nothing else, but things were smooth. I remember the pain I'd come to expect with endometriosis continuing, but my spirits were lifted now. Being pregnant was a state of bliss for me. Instead of the ill-tempered hormones, mine were the opposite. I suppose maybe that means I’m already moody without being pregnant, and that’s why I experienced the opposite. I was almost pathetically happy and sappy, to really get truthful here. Finally, I had a little less anxiety. I didn't feel like my life was really ending like I had, previous to learning the news.
The Process Of Miscarrying
During my first trimester, almost my third month into my pregnancy, I miscarried. I remember almost every part of that day. I had been experiencing cramps for two days, and being used to that kind of pain, I thought nothing of it. The third day, I woke up with the on and off cramping as well as a migraine -- nothing new, I've had them since I was a child in the sixth grade -- so if that was any indication as to what would later come, it totally bypassed my brain.
We had plans that evening to go to a friend's house, another couple with whom my partner and I were both friends back in our school days. This couple friend had surpassed us and were already on child number three, and I was excited to share experiences with the female of the couple.
During the late-afternoon to early-evening, the migraine was full-force and I felt sick all over. My stomach had turned on me and began the typical pain I recognized as endometriosis flare-ups. During the pregnancy though, these came a little less than before. I was quite used to being struck suddenly with the pain at any given time and almost hitting the floor. I can't tell you how many times I've shot down in the doubled-over position while doing house chores or grocery shopping. It was nothing surprising to me. I expected it to go away.
I guess when you've self-diagnosed yourself and are certain about your diagnosis, you tend to think you'll know any time something else is wrong with your body. Or that was me, anyway. You know, miscarriage didn't once cross my mind when I was pregnant. Even while it was happening, I was totally oblivious.
The pain session came and went before I was ready to leave the house. I didn't experience anything beyond the normal except a nagging pull in my lower stomach. I expected this. During the years of this craziness with my stomach, a monstrous growl was my normal. Any pain there was normal to me. The achy, pulling sensation continued throughout the evening, feeling like what I'd expect if someone actually took hold of one of my organs and kept pulling, but not releasing. It wasn't so bad that it kept me from doing laundry, housework and even finishing up work with a last customer of the day. But the migraine tread on. It didn't let up, it screamed.
Before leaving the house on our date with the couple-friend of ours, I took Tylenol for the tugging sensation and nightmare of a migraine, with no relief or high expectations of it. While sitting with our two friends and discussing all things kids, the pain turned into something else. Not the typical everyday pain I was used to. I don't even know an explanation for it. It was painful, but not extreme, and certainly nothing as bad as I'd felt before during a typical menstrual cycle. The only way I know to describe it is as a wild feeling in my lower stomach along with the still continuous tugging, and my face and head felt feverish, and then nausea. I felt almost similar to the fog you get from a sleeping medication. I still didn't realize anything serious was wrong, but wondered if I hadn't accidentally used a Tylenol PM instead of regular. Since things weren't getting better, we ended the date and went home. While in the shower, the double-over and hold your breath pain came and I felt on the verge of passing out, and that’s where I was as I miscarried.
Things were yucky. Really yucky. The sight alone felt worse than the mixture of migraine and the slow pulling of my uterus from my body, and I don’t remember one time feeling relief from the abdominal pain throughout that night.
Another Time Around
I had no idea all that time that endometriosis could have any effect on a pregnancy. I only knew that people said it could relieve the pain. A miscarriage often takes more than just one night to "complete." So the entire next day, I did as instructed -- wait and see if it "completes" or for me, wait for my child who was alive just the day before to leave my body. My partner joined me and rarely left my side during the entire process. That was helpful. Some women want to be alone, and some of us cannot bear to be alone during something like that. That's me. I cannot be alone during something like that. I don't know how I would handle it or myself. I don't think I could hold together when by myself.
Like every female who has this unfortunate experience, depression comes easily and quickly. Not wanting to leave, feeling hopeless, and just utter complete and total sadness. Nothing at all but sadness. It's intense, and I hate that I have nothing else to offer like "it is so sad, but the very next day you find something that makes you a little happier and eventually it all fades." I don't have something relieving to say because there is nothing. Not that soon anyway. I could say, "in time, you absolutely will be much better," and that is true, but let’s face it, those words are about as helpful as if I handed you a grain of rice and said "you'll have a month's worth of meals soon."
Then there's the blame. Self-loathing for some. Blaming yourself. I thought I'd die of guilt because well, I was sure that the pain -- or should I say the signs of me miscarrying -- that I'd been feeling all day, was normal endometriosis crap. After a good while of that, I became furious. Furious at myself for keeping on with the thought "if only I would've thought more about why I was having pains, maybe I'd have known before the actual miscarriage." I just got sick to death of keeping on with that thought. So I put it away and said I'd never say it again, and it took me several tries, but I did put that thought away.
After being so furious with myself, I guess that got old too, so I became angry with my partner. I don't know why because there was nothing at all he did wrong. He didn't cause our baby to die. He didn't leave me to grieve or even "complete" alone. But for some reason, I was mad. And I said that he didn't say enough things to make me feel better! The truth is, it didn't matter at all what he said, there wasn't one sentence anyone could've said to make me feel better. But I was scared that I would never break out of it, and I wanted a promise from someone, anyone that I would come out of it, even just a little.
After so much grieving and doctor visits and statistics about how “you're more likely to have a successful, quick pregnancy soon after your first miscarriage,” I felt a little back to being me. And then I was pregnant again, in the same exact year after losing my first baby! Talk about good news. But this time I was terrified of everything. I did not want to have the same experience over.
And I did.
I wasn't as far along as my first. Not even a total of two months. But sure enough, it happened again. The process was different from my first. I didn't feel an entire day of pain. I didn't even have pain until I actually began miscarrying.
In January 2012, just almost a year and a half ago, and long after my last miscarriage, still dealing with the endometriosis pain and IBS, I went back to my OB/GYN. Since I was no longer pregnant, more could be done. I was told that if I did want another chance to have a baby, that I should put off treatment/surgery and start trying right away. We discussed and pondered on it repeatedly. Each time, it came down to this one thing: I could not handle another loss.
I didn't make my final decision until four months later. In desperate and worsened pain, I decided since I was in too much pain, could not live a normal life as it was, the thought of not only more enduring of the endometriosis pain, but also the pain of another loss was too much to risk and I opted for surgery. I told my OB/GYN that I wasn't giving up, and wanted desperately to have a child, but wouldn't be ready to risk another loss in the near future. So instead of the removal of parts of my reproductive system, I opted for only removing the lesions. In my mind, I was thinking that although she’s telling me it's unlikely for me to be able to carry a child to full term, it's not impossible. Unless, of course, I chose to remove the parts of me that were required in order to become pregnant. I would endure some more pain if it meant having the possibility, because to me, it is a very real possibility. It's unlikely, sure. I can accept that, but unlikely is far from impossible. I don't live my life feeling like I'll never, ever have children of my own. I refuse to believe that it's impossible. For the love of Pete, I have the parts for it! Only they’re a little less “likely” than some other’s.
During my surgery, the majority of the endometriosis “lesions” were removed, but I still have lesions on, ahem, other organs. I've yet to become ready for another risk of loss, and I'm on a medication that helps prevent excessive growth of the endometrium. That means nothing has changed in my OB/GYN's opinion -- she still says it's unlikely, but has never said absolutely impossible.
As for the IBS, my partner and I hit the nail on the head with that little self-diagnosis too. The good news is that I rarely suffer from so much pain that I cannot live my life. I'm rarely down for entire days at a time. There's little treatment for IBS, but I chose a natural route -- treating myself and I hardly suffer with it these days.
Overcoming Grief & Self-Blame
How did I come from sobbing uncontrollably weeks at a time to a person who feels sad, grieves occasionally, but is back to somewhat normal, for the most part? This is one of the hard parts for me. Going back over the actual happening of my losses was really something, but how I really began to move on is something no other person besides my partner and I and close relatives know. And well, God and perhaps our two children.
During what felt like a depression I wouldn't be able to come out of, we were given suggestions on how to move on. It seemed the grieving was not lightening up for me, and my OB/GYN gave me a long list of suggestions to help with the moving-on process. There was one that stood out to me: a memorial service. A service for both of our children, and one where only the closest of our family joined.
The day of the service, I thought it was a huge mistake. Throughout it, I think I was even more sad than the days before and after. I started thinking I'd made a mistake and that I’d only pushed myself into a serious case of depression. But it wasn't like that much longer. I spent the rest of that week grieving and not leaving my house, but the coming week, I took up a few more of my regular activities each day. I reminded myself that all was peaceful -- the children were peaceful. The service was for healing. To say what I wanted to say to them both, and same for the others who were there. To leave everything bad and sad and horrible right there, and leave with newness. Of course, that doesn't mean forgetfulness or even that I don't re-think those days I was pregnant and the days I was not, but I left my blaming, shaming and anger there and didn't walk away until I felt I could do so without bringing those nasty feelings of blame, shame and anger back with me.
It was a nice service, much like any other. And just like a funeral service for someone who was actually in the real world, it's a means, a beginning of moving on. Not moving away from that loved one, but moving on for yourself, your sanity and the others who need you. It's a way of saying "okay, God, I trust you to take care of them for me until I make it there too."