Laparoscopy Surgery for Endometriosis

A few weeks ago, I received a request to share more about the laparoscopy I had in January.  When I was preparing for surgery, I searched the internet for blog posts about the procedure so I could get an accurate picture of what recovery would be like (and line up appropriate help). So I figured it might be useful if I shared my experiences as a blog post so that others could read it as well.

My surgery:
My laparoscopy was scheduled as an exploratory surgery.  My cycles didn't show much in the way of endometriosis symptoms, but since I had had recurrent pregnancy loss that didn't seem to have other explanations (I did have low progesterone but was on progesterone shots for two of my pregnancies and still miscarried), my doctor thought there was a good chance that I did indeed have endometriosis. According to the NaPro Technology website, "In women with repetitive miscarriage, 85% will have endometriosis." The link between miscarriage and endometriosis hasn't been well researched, but it's suggested that the endometriosis causes inflammation, which interferes with implantation. Anyway, since we were running out of testing options, the laparoscopy was really our next step. (UPDATE: This topic seems to finally be getting some attention! A recent study in Scotland showed that "women with endometriosis are at an increased risk of miscarriage and ectopic pregnancy. The research further found that women with a history of endometriosis whose pregnancies progressed beyond 24 weeks were found to be at a higher than average risk of complications, including hemorrhage (ante- and postpartum) and preterm birth.")

In addition to the laparoscopy, I was also scheduled for a hysteroscopy (a scope is inserted up the vagina to look at cervix and inside of the uterus) to check for scarring, polyps or other irregularities inside my uterus and for dye to be pushed through my fallopian tubes to clear them if they were blocked (I don't think it was actually a hysterosalpingogram since I don't think that x-rays were taken during the process, but maybe they were?). My fallopian tubes were clear and my uterus looked perfectly normal.

Because it was an exploratory surgery, I didn't know what to expect going in since I wasn't sure what would be found. My doctor planned to remove any endometriosis that he saw so the length of the surgery (and recovery) would depend on the extent of endometriosis present. If none was found, I would only have one small incision in my belly button. As it turns out, I did have extensive endometriosis, which caused some of my organs to adhere to one another, and an endometrioma (a cyst of endometrial tissue) on one ovary. I ended up with three incision, one in my belly button and one on each side close to my hip bones. Each is less than a half inch long. The surgery took about 2 hours.

What exactly is a laparoscopy?
I realized after my surgery that most of my family and friends didn't realize exactly what happened during my surgery. They seemed to think that the endometriosis was removed from the inside of my uterus. That is not the case. Endometrial tissue is supposed to be on the inside of the uterus. During a woman's cycle, the endometrium in her uterus builds up, providing, in essence, a cushion in which a fertilized egg can implant. If no pregnancy occurs, the endometrium leaves the body (menstruation). This is normal and healthy. Endometriosis occurs when endometrial tissue is located outside of the uterus (the reason why this occurs is still unknown, though there are a few theories) on various organs and ligaments in the abdominal cavity, which often causes them to adhere together.

Therefore, surgery to look for/remove endometriosis occurs outside the uterus in the abdominal cavity. A small incision is made in the abdomen and a scope is inserted to look around the abdominal cavity. If endometriosis (or anything else) is found and needs to be removed, it's usually done through that small incision and/or a few others, though sometimes bigger incisions are necessary. Gas is pumped into the abdominal cavity so that the doctor has space to look at the organs and perform the necessary excision/cauterization of endometrial tissue.

Preparation:
Here are a few of the things that I did to prepare for surgery that I would suggest someone else does --

• Lined up someone to care for my daughter during the surgery and afterward. A family friend took care of Lucia the day of the surgery and my mom flew out the next day to stay with us for a week. If my mom didn't come out, it would have been nice to have a meal train set up in addition to child care for Lucia for the following week. (Or a house stocked full of easy to make items, like yogurts, soups I just had to heat up, and takeout menus.) I probably could have survived alone with Lucia after the first four or five days or so, but having a full week and a half of rest made sure that I didn't overdo it. And, from what I've read, recovery can vary widely, so it was quite possible that my recovery could have been slower. Having help lined up for longer than needed is much less of a problem than not having help for long enough.
• Had Gas-X and a heating pad at the ready. Before my surgery, I repeatedly read that the main source of pain after a laparoscopy was not the incisions but the gas that was pumped into the abdominal cavity. This gas usually collects in the shoulders and neck when you sit/stand and can be very uncomfortable. A heating pad and Gas-X are said to help. I didn't actually have much of this pain (my doctor said he was able to get most of the gas out after the procedure) but I was glad I had these on hand just in case and did use them minimally the first few days.
• Made sure I had an appropriate wardrobe. Because of the gas (ie bloating) and location of incisions, wearing jeans isn't comfortable for a while. I was able to fit into regular jeans pretty quickly (other women reported it being a few weeks until bloating went down), but the waist band rubbed against my sore incisions. Skirts and pants with stretchy/jersey waistbands were necessary for the first 1-2 weeks for me. I went through the clothes I had to make sure I had at least a few options to wear. I did, but had that not been the case, I would have shopped some thrift stores so get enough bottoms to last me between laundry loads.
• Prepared things to do while recovering. It was hard to read the first few days because of the pain medication, so I knitted and watched some Netflix shows I'd been wanting to watch but saved up specifically for after surgery. My sister-in-law sent me a few new books I'd been wanting to read, so that was helpful to pass the time after the first few days. You are supposed to get up and walk around to help you heal, so you're not on bed rest, but I was very tired and in bed resting much more than usual. 
• Followed the hospital rules. I'm sure this goes without saying, but I followed the directions given to me at my pre-op appointment to a T. Not just the obvious things like no food or drink after midnight (if I had to do it again, I would have had several glasses of water the night before because I felt SO dehydrated all morning before my surgery), but also the light meal the night before, etc. 

Recovery:
When I read other blog posts and asked other women who'd had this surgery about their recovery time, I found a wide range from from only a few days to six weeks. Mine fell on the shorter end. It took me a good two weeks to feel 90% and about a month before I was back to 100%, but after about 4 days, the initial pain and weakness was gone. (As someone mentioned, I conceived less than two weeks after the surgery, so recovery couldn't have been too awful.) I had the surgery on a Friday and was back to caring for Lucia single-handedly during the day on the Monday a week and a half later. I would have loved a few extra days of rest during the day because I was still tired and moved a bit slow, but I survived just fine. I wouldn't suggest someone go back to a physical job that quickly, but a desk job I could have managed.

I only needed the prescription pain medication for two days after the surgery, then I switched to over-the-counter ibuprofen. I only took that for a few more days as needed (not all day long) and stopped taking any pain medication about 4 days after the surgery. After that point, most of the pain was related to quick abdominal movements (like sitting up in bed quickly, forgetting that I had just had surgery - ouch) or accidentally bumping my incisions.

Trying Again:
Though not everyone has endometriosis removed to conceive, many do, so I thought I would mention this piece real quick. My doctor usually does laparoscopies during the first half of his patients' cycles so that they can start trying to conceive the very same cycle. Other women I talked to said their doctors told them to wait 1-2 full cycles after their surgery before trying to conceive. So there isn't a set amount of time. My doctor encourages trying right away because endometriosis often returns so the chances of conceiving may decrease over time as the endometriosis returns and spreads.

Of course, regardless of what my doctor said, it was up to David and me to make our own decision about how long we wanted to wait. The surgery didn't delay ovulation like I figured it would  (it did affect my mucus buildup, but peak was on the same day it is almost every cycle), so I actually ovulated much closer to the surgery than I expected. Since I was feeling up to *ahem* relations, we decided to try right away, in part because it usually took us several months to get pregnant. Apparently, with the endometriosis gone, we get pregnant much quicker because we conceived right away, which we did not expect at all. (Though it makes sense - after my surgery, my doctor said he was surprised I'd been able to get pregnant at all in the past few years because of the extent of the endometriosis.) Thankfully, I already felt fully recovered from the surgery by the time I got a positive pregnancy test and before I had any pregnancy symptoms.


Anything I didn't cover that you'd like to ask about? Feel free to ask questions. If you'd like them to be anonymous, feel free to email me. And if you do comment here, MAKE SURE YOUR ACCOUNT IS LINKED TO YOUR EMAIL ADDRESS so I can reply directly to you, especially if I don't feel comfortable answering a specific question in a public manner.

Unexpected Gratitude

The last thing I expected after surgery confirmed endometriosis and an endometrioma was to feel grateful for my body. I'm spent a long time feeling angry at and betrayed by the body that failed to support and nourish four of my children.

After my surgery, my doctor commented that he was surprised that I've been able to get pregnant due to the extent of endometriosis, and the presence of an endometrioma especially. At this thought, I felt an incredible sense of gratitude toward my body. I have low progesterone and had extensive endometriosis, both conditions which cause infertility. And yet my body was still able to achieve pregnancy. It wasn't able to sustain those pregnancies, but it fought against adverse conditions to even get as far as I did. My body is strong, a fighter.

I've also healed incredibly quickly and easily. Two weeks after the surgery, I feel almost 100% - still more tired than usual, the incision sites are a bit sore, and moving too quickly or carrying too much reminds me that my ab muscles are still healing.  But I'm basically back to normal.  In fact, I've been feeling this well for the past week.  Another reason to be grateful for the body God gave me.

I think the key to feeling this way is to not see my body as broken, but to see my body as being attacked by something outside - disease, injury, poor diet, environmental pollutants, etc. God did not create my body to have endometriosis or progesterone but something, somewhere along the way went wrong to provoke these conditions. In the Garden of Eden, the world before sin or suffering, my body would be perfect and whole. My body is not the enemy, but a victim.

The silver lining of multiple miscarriages and a surgery in less than a year and a half is that I almost always seem to have a beautiful bouquet of flowers around.

After Surgery

On Friday, I had a hysteroscopy and laparoscopy to look for the cause of my recurrent miscarriages. My doctor found extensive endometriosis and was able to remove most of it. After the surgery, he commented to my husband that he was surprised I had even been able to get pregnant with how much I had.

Since informing friend and family, I've been asked several times how I feel about learning I have endometriosis. Some have assumed I'd be quite jubilant because We have an answer! And the doctor removed it! Others assumed I'd be quite depressed about the news because Endometriosis is a life long struggle! It comes back! Those conclusions are both quite apt. I'm feeling a lot of mixed emotions.

I'm trying to be really optimistic about it all. I am glad we have an answer but there is truly no way to know if endometriosis caused my losses or is just one of several reproductive issues I face that have combined to cause four losses.We are hopeful that this was the missing puzzle piece and that our next pregnancy will carry to term but I have to keep in mind that this might be just one piece in a still incomplete puzzle.  We initially thought low progesterone was the cause and naively assumed that progesterone shots would result in live babies. They didn't. So, while I hope this is exactly what was needed, I must also remind myself that conception and pregnancy is an extremely complex process in which so many things must go right (and therefore so many things can go wrong) in order to have a living child at the end.  Even if endometriosis caused all my previous losses, something completely different - genetic abnormalities or whatever - can cause the next pregnancy to end far too early. In this world of modern medicine, it's tempting to think that we can control nature and the human body through medicine. But we can't. I imagine any doctor can tell you. We can often work with nature, but we cannot control it outright.

But even if we knew for sure that the cause of all my heartache was endometriosis, that diagnosis is scary enough. It will come back so it's something that I'll always live with and something that will always threaten my fertility and babies in utero. I worry that I won't realize it's growing back until it's caused another loss or two. I didn't have many of the typical symptoms of endometriosis, so the losses themselves were really the only reason to suspect it.  

I was hoping it was something else with a more permanent fix, though certainly it's much better that having no answer or one with no treatment at all.  Endometriosis is not a very unexpected diagnosis. A gynecologist offhandedly told my teenaged self that I most likely had endometriosis and would never be able to have children (thank goodness she as wrong about that second part).  My doctor expected he would find some and the NaProTechnology website states, "In women with repetitive miscarriage, 85 percent will have endometriosis."  So, not a surprise, but also not a reality I was willing to face or think through until I got the final verification. And my doctor gave me some lovely pictures of my endometriosis-riddled insides so there is no denying it now.  

I feel like I'm facing an important decision: how do I react to this news? Do I put all my fears aside and choose to see this as an opportunity to trust God? Or do I wallow in the fears of what is to come? Certainly I don't think endometriosis or miscarriage are God's doing, but I do know that, if you let Him, God can bring goodness and beauty out of anything. Even the ugliness of organs scarred (and adhered together!) by endometriosis. That, my friends is disgusting to look at (what exactly am I supposed to do with those pictures anyhow?) but God is working in me to bring goodness out of it all. Even if we don't have more living children. And I'm starting to be ok with that - a future filled with God's goodness and beauty, a future of meaning, a future as just a family of three.

Pregnancy Loss Resource: Coming to Term, a book to explore the medical side of miscarriage

This book review is an updated version of a post that originally appeared on my old blog, Messy Wife, Blessed Life, on April 21, 2014. This post contains an Amazon affiliate link.

Coming to Term: Uncovering the Truth About Miscarriage by Jon Cohen

Coming to Term is a different type of miscarriage book - it's purpose is not to comfort women or share personal narratives and coping strategies. Instead it explores the scientific research behind miscarriage which, in it's own way, can be a comfort to those who have experienced pregnancy loss.  The author, Jon Cohen, is a journalist who, after having gone through his wife's multiple losses, noticed that doctors seemed to have very few concrete facts about miscarriage and set out to discover the scientific truth behind miscarriage himself by piecing together the scant medical research on the topic.

I read Coming to Term after my first miscarriage and was a bit ambivalent about it; after having a second miscarriage soon after, I'm grateful to have read it.  Knowing some concrete facts about the causes of miscarriage and some of the potential treatments kept me from losing hope after my second loss.  I still often repeat to myself the statistic that Cohen shares: a woman who has a history of repeat miscarriages - three or more - still has a 70% chance of carrying a pregnancy to term without medical intervention.

Perhaps the biggest lessons to be learned from this book is that miscarriage is more common than it was once thought, is largely still a mystery, and most miscarriages cannot be prevented.  Those are some tough facts to face for women that want answers and treatments, but can also be a comfort to know the truth, especially for the many men and women who are told conflicting, outdated, and non-evidence-based information from various medical professionals.

In additional to the hopeful statistics for future pregnancies, the two additional pieces of information that I have felt most useful to me are: 1) Research shows that approximately 50% of miscarriages are due to chromosomal abnormalities, which couples have no control over.  These losses are do not raise the risk for future miscarriages. 2) Blood clotting disorders cause a significant number of miscarriages and the use of heparin and aspirin during pregnancy has been shown to raise the chances of successfully carrying a baby to term.  Because I read this book, I was able to get testing and rule out blood clotting disorders after my second loss. (My doctor would not have mentioned them until after my third.)

I would caution women from reading this book right after a miscarriage.  Give yourself a few months to heal and read some of the more compassionate experience-sharing books first.  (I recommend After Miscarriage and Angels in my Heart.)  I found Coming to Term at times to be very difficult to read because it approached miscarriage in a clinical way.  In addition, there is frequent reference to abortion (there are very strong links between abortion and miscarriage research), fertility treatments that do not respect the dignity of life, and surrogacy, all of which bring up ethical/moral issues and may be difficult to handle soon after a loss.

A consumer-focused view of parenthood that treats babies as a commodity to be obtained runs throughout the book, though it certainly isn't the author's focus or even his intention; he simply includes stories of real couples, many which unfortunately include elements of this.  It is worth reading this book for the valuable medical information it contains; however, make sure you have healed enough and are prepared to be confronted by these issues.