Patient Story- Kasi: Endometriosis, Infertility and the Path to Motherhood
As Endometriosis Awareness Month comes to a close, we wanted to share Kasi’s journey. It’s one of strength, resilience and hope. Kasi endured years of pain from endometriosis, multiple surgeries and several IVF cycles. Through every challenge, she never gave up on her dream of becoming a mother. Today she holds that dream in her arms- her beautiful son, Koah.
He has brown russet-colored eyes that are full of depth. They sparkle when he laughs and when he looks at me. He has his father’s hair and my jawline. His latte-colored skin comes straight from me. He is the light of my life and for many dark years, I wondered if he’d ever be here.
Years of Pain Without Answers
I had a plan for my life as many women do. The plan was to finish graduate school, get married, buy a house, and then start a family. My early twenties had their own hardships that centered around midterms and quarter-life crises. I also had unusually painful periods that most doctors dismissed with instructions to start taking ibuprofen a couple days before my period would start. But the pain would still leave me curled in a ball in the middle of my bed every few months. A doctor at the health services recommended taking birth control pills to help regulate my periods and reduce the pain. It worked for several years. When my husband and I turned 30 years old, we decided that we wanted to start our family. That required me to stop taking the birth control pills and to begin planning the next part of our lives. We planned on 2 or 3 children. We talked about the types of parents we would be, and we made plans around their impending arrival. But the arrival seemed stalled.
The pain was back. Sometimes it would be debilitating, and it would cause me to miss work. I was also having digestive issues that would cause chronic constipation and discomfort. I started a new job that could be stressful, so I thought it was all stress related. In the winter of 2012, the holidays were rough. After Christmas, I found myself in significant pain. I recently switched doctors and decided to see my new doctor to find out what was going on.
The Diagnosis That Changed Everything
Dr. Melissa Kwak was the first doctor who listened to me when I told her about all the pain I was having. She ordered an MRI that started me on my journey. The MRI found a fibroid the size of a grapefruit on my uterus. She sent me for further testing with Dr. Brett Cassidy and he recommended that I have surgery to have the fibroid removed in February 2013. I was 32 years old. I remember feeling so frustrated that my body could betray me in that way. I know the depth of the betrayal.
The surgery was meant to be laparoscopic. They explained that I would have tiny keyhole incisions made in my abdomen and another in my belly button so that the machine could excise the fibroid without them having to open me up with a lateral incision. They expected everything to go easily and after recovery, we could begin trying to have a baby again. When I woke up from anesthesia, I was in overwhelming pain. I began screaming and the nurses rushed to me. I heard one say, “We need to manage her pain!” I knew immediately that something went wrong. I kept asking over and over what happened, but no one answered me.
“You have endometriosis,” my doctor later explained to me. They had to abandon the laparoscopic surgery as soon as they could see what they were dealing with. They had to open me up laterally (like a c-section). I had adhesions all over and this was the reason for my extreme pain during menstruation. With endometriosis, endometrial tissue is found in other areas of the pelvis. When the body menstruates, the tissue in these other areas, outside the uterus, bleed as well. The body treats these areas as internal bleeding and rushes to heal it and create scar tissue around it. These are called adhesions. My doctor was able to save my reproductive system and remove the adhesions. He gave us the green light to begin trying to have a baby again. He explained that being on birth control was unknowingly treating the endometriosis. But to start our family, I could not take medication for the condition. The instructions were to get pregnant fast since there was no cure for endometriosis and the adhesions can return. We were optimistic, but another year passed without a baby.
IVF and the Emotional Toll of Infertility
We realized that it was time to talk to a fertility specialist to assist us. Dr. Cassidy recommended that we see Dr. Charles Miller in Naperville, IL to assist us. However, our insurance didn’t cover Dr. Miler. So, in 2014 we began working with another fertility clinic. The doctor with this center, decided quickly that IVF would be the best option. We were 33 years old, so the odds were in our favor.
At this clinic, we ran into more complications. They had trouble with egg retrieval. They sent me back to Dr. Cassidy for another laparoscopic surgery to remove more endometrial adhesions. We finally got 10 embryos but only 4 survived. They transferred 2 embryos in December 2014. We would have to wait 2 weeks to find out if the embryos took and if we were going to be parents. During that 2-week wait, my father-in-law passed away from heart disease and we were mourning. I look back on that period with a lot of pain. I often wonder if the grief and the negative emotions I felt made my body inhospitable for those little babies. We found out that the embryos didn’t take a couple days before the funeral, so we grieved my husband’s father, and the loss of the embryos. I fell into a mild depression after that. I admitted this to my doctor, and she suggested that I begin seeing a therapist. I was dealing with a lot of guilt and grief over my father-in-law passing. I felt like I was selfish in his last days because I was so focused on the embryo transfer, but I also felt that I was a terrible mother to those embryos because I did not provide a positive environment where they could grow.
Infertility can be a lonely thing. Even though I was surrounded by doctors and nurses and friends and family who encouraged me, I still felt alone. I felt profound shame and inadequacy. I didn’t think that I was worthy to be a mother and maybe somehow God had ordained it to be this way. I received confirmation of my own perceived condemnation when a second embryo transfer did not yield a pregnancy. I needed time off. For a year, I didn’t want to think about fertility or trying to have a baby. But during this time off, the endometriosis did not leave me. The pain became severe again and I knew that I’d need to address it and decide if we’d want to try to be parents again. Through this time, we switched to a new insurance. I went to see Dr. Cassidy to ask about another surgery for the endometriosis. He asked us again if we thought about Dr. Charles Miller. He said he was one of the leading specialists in the area for endometriosis and he could do the surgery. We investigated our insurance coverage, and we were happy to find that Dr. Miller was covered.
Finding the Right Specialist
When we first met with Dr. Charles Miller, it was on a Sunday. He was dressed in a beautiful suit. He looked outstanding. He immediately helped us feel at ease. He tailored the treatment plan to me and my unique circumstances. That was refreshing, because our last doctor wanted to use the same protocol with me that she used for every woman she treated, regardless of the diagnosis. We were 35 years old and desperate to make things work. The fertility world talks about age 35 as the gateway into geriatric pregnancy. The percentages of successful live births begin to go down at this point and risks of birth defects and other issues increase. We were anxious to get started. I had 4 or 5 surgeries, numerous egg retrievals and 3 embryo transfers with Dr. Miller. I remember, after a disappointing cycle, we sat in Dr. Miller’s office with him. He was quiet after explaining what happened and we were quiet. I remember asking him not to give up on me. I remember he took my hand and told me that he was willing to fight along with us for as long as we were willing to fight.
In January 2020, I needed another surgery for endometriosis. I was 39 years old and desperate to try again before I turned 40. We had one frozen embryo left from the previous cycle. The plan was to have the surgery, do a few more egg retrievals so we could transfer more than one embryo. The odds are always better when you have more than one embryo to transfer. By the summer of 2020 I went for tests, that showed that I wasn’t ovulating after the last surgery and there wasn’t much hope of getting more embryos. Dr. Miller talked to us about donor eggs, but my husband and I didn’t want to give up on the dream of having a child that was a little bit of both of us. So, we decided to transfer the one embryo we had. We decided we were done with the whole IVF process. We started looking into foster care and adoption. It took another 6 months to get insurance and all other circumstances to line up.
One Last Chance at Motherhood
In February 2021, a few months after I turned 40-years-old, I came into the office to transfer the last embryo we had frozen. We were in the thick of COVID protocols so my husband couldn’t come in with me. When the doctor came in, I tearfully told him about the amazing impact he had on my life. I told him that no matter the outcome, I was just so grateful that I had the opportunity to reach for my dream when so many other women didn’t even get the chance to try. We both cried and he told me that he had a great feeling about that transfer. I had a sense of peace after that last cycle. In the past I did acupuncture after the embryo transfers to increase the odds of the embryo taking. But this last time, we chose to go to my father’s house and pray. My husband, my father, and I joined hands and prayed the most beautiful prayer about gratitude and joy regardless of the outcome.
The Call That Changed Everything
On the morning of my blood test after the 2-week-wait, I felt hopeful and peaceful. I knew this was going to be my last time going through the process and maybe knowing this gave me peace that day. Normally, the results of the pregnancy tests came to us on a portal app on my cell phone. I thought that I wouldn’t hear anything until the afternoon. During my morning break from work, I decided to lay down and take a nap. Before I could fall asleep, my phone started ringing and it was Dr. Miller’s office. They never called before on pregnancy test day, so my heart was in my throat when I answered the phone. The nurses in the office had me on speaker phone. The phlebotomist, the ultrasound tech, and two of the nurses were gathered around the phone. They asked me if I was sitting down. When I told them I was, one of the girls screamed, “You’re pregnant!” I immediately fell on my knees. I cried on the phone with them for what felt like an hour. I could hear a few ladies crying with me and I heard them yelling “Congratulations!’ I couldn’t even speak. It was 10 years of waiting. 10 years of crying. 10 years of wondering what I had done wrong, 10 years of disappointments. The emotion that flowed through my body in that moment was pure joy.
A Dream Come True
My pregnancy went forward without any complications. We were blessed because I was healthy, and the baby was healthy. I gave birth to a beautiful baby boy named Koah. I am certain that I just gazed at him for hours. I still love to look at him. We had waited so long for him, and he had waited for us as a frozen embryo. He was the very last to be transferred, but he was destined to make it into our arms. Koah is our only child, but our hearts remain open and excited about this beautiful life we will have with our son. I knew from the moment that my pregnancy was confirmed that I would share this story. I knew that I wanted to encourage other women who feel isolated while going through this journey. I persevered and I was able to experience the miracle of feeling a life growing inside me. I can watch him grow as a walking and breathing testament to my own strength and endurance. The journey taught me to feel worthy regardless of the outcome and I am looking forward to helping other women feel empowered and strong.
-Kasi
How Endometriosis Affects Fertility: Causes, Symptoms, Diagnosis and Treatment
We spoke with Dr. Laurence Jacobs, a reproductive endocrinologist with over 30 years of experience, to explore how endometriosis impacts fertility and how to recognize the signs of this often misunderstood condition.
How Does Endometriosis Affect Fertility?
Endometriosis can make it much more difficult to get pregnant. In fact, 20-50% of all infertile women have endometriosis, making it a prevalent issue in reproductive health.
One of the main ways endometriosis affects fertility is through scar tissue formation. When endometrial tissue grows outside the uterus, it can create scar tissue, adhesions and inflammation around the ovaries and fallopian tubes. This can often distort the normal anatomy of the pelvis, making it harder for the fallopian tubes to move over to the ovary and pick up the egg during ovulation.
Endometriosis can also interfere with ovulation. Endometriomas, which are cysts formed by endometriosis growing deep within the ovaries, can disrupt ovulation by affecting both the development and/or release of eggs. Additionally, some research suggests endometriosis can negatively affect the egg quality due to the inflammatory environment it creates within the pelvis.
Another concern is embryo implantation. The inflammation caused by the endometriosis can make it more difficult for the embryo to successfully implant within the uterine endometrial lining, leading to infertility or recurrent pregnancy loss.
The severity of endometriosis plays a significant role in its impact on fertility.
- Stages 3 or 4 (more advanced endometriosis) involve severe adhesions and endometriomas, which can have a major impact.
- Stages 1 or 2 (milder cases) may only involve small implants of endometriosis, which can still affect fertility but to a lesser degree.
The stage, severity and location of lesions and implants all play a significant role in how endometriosis affects fertility.
How Can You Tell If You Have Endometriosis?
The most common symptoms of endometriosis include:
- Pelvic pain
- Moderate to severe menstrual cramps
- Pain during sexual intercourse
Although some women with endometriosis have no symptoms at all. A pelvic exam can sometimes reveal signs of endometriosis, such as hard nodules at the bottom of the pelvis.
Ultrasound is another useful tool for identifying endometriosis. Endometriosis growing very deep inside the ovaries, can form a cyst called an endometrioma and these cysts can be seen on ultrasound. However, most smaller implants of endometriosis cannot be seen on ultrasound. Ultrasound can only detect advanced stage 3 or 4 endometriosis, while smaller implants and adhesions seen in Stage 1 or 2 may not be visible.
How Is Endometriosis Diagnosed?
Symptoms and signs of endometriosis and even ultrasounds can make one suspicious of endometriosis, but the only way to definitively diagnose the condition is through laparoscopy. A laparoscopy is a minimally invasive procedure that allows a surgeon to look inside the pelvis using a laparoscope, which is a thin, telescopic rod with a video camera on the end. Not only can laparoscopy surgery confirm endometriosis, but the procedure can treat it as well.
Why does surgical expertise matter?
Because advanced endometriosis (Stage 3 or 4) often involves severe adhesions affecting the ovaries, intestines, bladder and ureter, it is highly recommended that the laparoscopy be performed by a skilled reproductive surgeon rather than a general gynecologist.
- A skilled reproductive surgeon can both diagnose and remove endometriosis in one procedure.
- You don’t want to undergo surgery just for diagnosis, only to need a second procedure for treatment.
- A less experienced surgeon may leave some endometriosis behind or be unable to treat complex adhesions.
New Advances in Endometriosis Testing
In the last seven years, innovative diagnostic measures have been developed to help determine if a woman with no symptoms or ultrasound evidence might have endometriosis. It also helps physicians decide who would be a good candidate to undergo laparoscopy.
Back in the 1980s and 1990s, it was standard procedure that everyone with infertility undergo laparoscopy, but now we try to be much more selective. The ReceptivaDX test, an endometrial biopsy performed in the office, checking or sampling the uterine lining, measures a protein called BCL6, a marker usually associated with endometrial uterine inflammation and potentially silent endometriosis.
An abnormal biopsy result usually means there is endometriosis or inflammation in the pelvis. This biopsy can be very helpful for women who have no symptoms, evidence of endometriosis on ultrasound or unexplained fertility.
Seeking Expert Care
If you think you might have endometriosis, it is imperative to seek out an experienced reproductive surgeon specialized in treating advanced endometriosis. In my opinion, Dr. Charles Miller, Dr. Kirsten Sasaki, and Dr. Molly McKenna are among the best reproductive surgeons for endometriosis treatment in the Midwest. Their expertise ensures that patients receive the highest level of care for both diagnosis and treatment, improving their chances of achieving a successful pregnancy.
Request a consultation or call 630-428-2229 to schedule.
Understanding Endometriosis: What Patients Need to Know
In honor of Endometriosis Awareness Week, we asked Dr. Kirsten Sasaki what she thought patients need to know about this disease that affects 1 out of 10 women.
What to Expect During Your Endometriosis Appointment
If you think you may have endometriosis, being prepared for your medical appointment can help you get the most out of your visit. Here’s what you can expect:
- Thorough medical history including any surgeries and menstruation history
- Physical exam including pelvic exam and pelvic ultrasound
- Depending on findings, your doctor could recommend further lab work and/or an MRI
How to Advocate for Yourself During Your Appointment
Advocating for your health is important, especially with a condition like endometriosis that is often misdiagnosed or overlooked. Here’s how you can make the most of your appointment:
- Tell the physician about any pain, discomfort, bloating or abnormal bleeding you are experiencing
- Don’t wait for your physician to bring up these questions. Write them down before the appointment. Writing down your questions and symptoms ensures you don’t forget to mention any concerns.
- Be direct with your physician. Ask if any of these symptoms might be occurring because of endometriosis.
Key Endometriosis Symptoms to Track
Tracking your symptoms can help with diagnosis and treatment. Pay attention to:
- Pain both on and off your period
- Pain during intercourse
- Painful bowel movements
- Changes in bowel habits during and around your period
- Heavy or prolonged bleeding (periods lasting more than seven days or needing to change protection every 1–2 hours)
- Frequency of NSAID use for pain relief
- Missed work or social activities due to pain
Common Misconceptions About Endometriosis
One of the biggest myths about endometriosis is that if your imaging (such as an ultrasound) is normal, you don’t have the disease. In reality, many patients have normal imaging results yet still experience all the symptoms of endometriosis. A laparoscopy can definitively diagnose the condition by allowing the doctor to confirm the presence of endometriosis and remove the diseased tissue via excision.
Finding Relief from Endometriosis Symptoms
Various treatments can help manage endometriosis symptoms and improve quality of life. Patients may find relief through:
- Pelvic physical therapy can help reduce pain and improve mobility.
- Acupuncture may help alleviate symptoms by promoting circulation and reducing inflammation.
- Exercise and regular movement can help reduce pain and improve overall well-being.
- Eating a healthy diet rich in vegetables while limiting processed foods and red meat may help manage inflammation and symptoms.
Endometriosis is often underdiagnosed and misdiagnosed leaving many patients to endure years of pain and countless doctors appointments before receiving a diagnosis. No one should have to leave their pain untreated.
Our dedicated team is here for you, request a consultation.
Patient Story- Charlinda
As we wrap up Endometriosis Awareness Month, it’s only fitting that we share a patient story with you. Charlinda had endured years of pain and surgeries because of her endometriosis and wondered if she would ever be able to have a child. In 2017, she was referred to Dr. Miller. He performed surgery and three short months later, Charlinda conceived her son, Preston. Today is Preston’s 6th birthday! Charlinda shares her journey so that others won’t let a diagnosis like endometriosis discourage them from motherhood. Read Charlinda’s inspiring story below.
I remember how what first looked like a super sad day actually became a blessing in disguise. Sitting nervously in my OBGYN office, hearing her tell me she could no longer see me, felt like a huge break up. She was the only doctor I trusted since moving to Illinois. Due to the numerous endometriosis surgeries she performed on me and the fact that I wanted to become a mom one day, she felt there was another doctor who could better help me. With tears in my eyes, I reluctantly took the number of Dr. Charles Miller.
At the time, I was in my late 30s and not feeling particularly optimistic about meeting a new doctor and his staff for the first time. However, my OBGYN said Dr. Miller was the best in the area and I trusted her judgment. I walked into the waiting room and saw anxious couples and beautiful baby pics posted on the walls. At that moment I told myself my child will be on that wall one day. I finally met Dr. Miller who just returned from vacation, fully tanned and full of life. He listened intently as I explained my health journey and how I knew IVF financially wasn’t an option. It’s been some years but I do remember him saying this was not a problem and that he would get me as close as he could as though I would be an IVF patient. Per his recommendations, I exercised more and ate a healthier diet in preparation of my surgery to remove the endometriosis. I can honestly say after all of my other surgeries this one was the easiest recovery I ever experienced. I followed his plan to a tee and I conceived three months later. Now my son just turned 6 years old.
I know everyone’s journey is different but I share my story so others won’t allow a diagnosis that “may” increase infertility discourage you. Once realizing I was determined to defy the odds, I kept reminding myself what my parents constantly told me, fear and faith cannot live in the same house. I was so proud to announce to Dr. Miller I had a successful pregnancy. Once he knew I conceived, it was onto the next patient. This just goes to show his dedication to his craft. This is so important because I didn’t need him to hold my hand but to get me healthy enough for a fighting chance to conceive naturally. I was glad to get him quickly back to make other women moms. Words can’t express the gratitude our family has towards Dr. Miller and his entire staff!! Thank you.
Patient Story- Breda
“Not everyone will understand IVF or be able to relate, so it’s important to surround yourself with support. More people than you realize struggle with infertility.”
Today’s patient story is from Breda. After not finding success or feeling comfortable at another fertility clinic, Breda came to us. We are all glad she did! Dr. Miller was able to diagnose her with endometriosis and after surgery and IVF, she was able to get pregnant. Breda is due in January!
Breda writes:
I met my husband later in life and we got married when I was 38. I was and still am wary of the stigma of older mothers, even though being older is accepted. I’ve always wanted a family and we started trying right away, but I had three miscarriages in a year and a half. I was at a different fertility clinic for a year, but didn’t feel comfortable there. My husband’s colleague recommended we see Dr. Miller and what a difference!
We first met online during COVID and Dr. Miller told us, “You’ll be a mother, kiddo.” He was so kind, didn’t rush us, and he explained everything. He learned I was an English teacher and told me a story that put me at ease. He never stopped his storytelling, and I welcomed his personable demeanor after some bad experiences at the previous clinic. Dr. Miller found issues that the previous doctor did not, including endometriosis.
After a biopsy, Dr. Miller found abnormalities in my uterus and I was diagnosed with Level 1 endometriosis. During surgery, he removed five spots on my uterus. I also had the Endometrial Receptivity Assay biopsy to determine the receptivity of the uterus to implantation. Soon after, we had an egg retrieval and two transfers.
Throughout this process, Dr. Miller and his staff explained everything so thoroughly and never seemed irritated or disinterested when I had questions. I also got to know Dr. Miller and the nurses because they talked to me during appointments. I always felt people cared and were invested in our success. I felt so secure going into our procedures and never felt anxiety or stress visiting the office.
Even though our first transfer failed, a second embryo implanted and I will never forget that experience. Dr. Miller, Courtney, and Melody were present for the transfer, and made me feel so comfortable. Dr. Miller even told us a funny story about meeting an actor from Will & Grace. While we waited after the transfer, my husband and I held hands and prayed, and we also talked about how wonderful it would be if it worked. Many times, we dreamed of finishing our nursery and being able to move forward with our plan. The transfer worked, and our baby is due January 8, 3.5 years after we began IVF and what seems like a million doctor appointments.
I was very nervous the first 12 weeks of my pregnancy and braced myself for bad news, but at every ultrasound Courtney reassured me with her positivity. We are so grateful for everyone at the Naperville office.
It took until I was about 20 weeks pregnant for me to relax and realize we’re finally going to be parents! I’ve cried many happy tears for a change! Not everyone will understand IVF or be able to relate, so it’s important to surround yourself with support. More people than you realize struggle with infertility. Meditation and journaling are helpful (as well as long walks with our dog, my first baby). Finally, never stop hoping and praying, even if you’re an older mother!
Patient Story- Courtney
“Keep going even when it feels like you can’t… The little victories will give you strength.”
Today’s patient story is from Courtney. Courtney discovered she had endometriosis when she and her husband were not able to conceive naturally after several months of trying. After undergoing surgery with Dr. Miller, she was able to get pregnant via IVF and just welcomed a baby boy only three weeks ago! Congratulations Courtney!
Courtney writes:
My husband and I began trying to conceive in late 2017. While at my yearly gyno appointment in May 2018, I mentioned we were trying to conceive. I was told to track ovulation with an app and/or pee sticks and go from there. My period had always been like clockwork and I learned that my ovulation was too. I maybe had heavier/more painful periods but nothing that ibuprofen and a heating pad couldn’t fix. My gynecologist did an internal ultrasound and noticed that one ovary was dense, leading her to believe that I might not ovulate on that side, however my pee sticks indicated that I did.
We ended up getting pregnant on our own in the summer of 2019, but that ended in a miscarriage (D&C) as there was nothing in the sac. I then had the dye test to see if my tubes were blocked and they were not. I also did 3 rounds of clomid with no pregnancy. This was the end of the road with my regular gynecologist as she couldn’t help me any further.
I then went to another gynecologist in my hometown to move onto IUIs. He did a natural IUI with no luck. Then we tried a medicated (clomid) IUI with no luck either. During this process, he did an internal ultrasound and that’s when I first learned I possibly had endometriosis. He referred me to Dr Miller.
I had laparoscopic surgery with Dr. Miller in Feb 2021 for endometriosis. We decided to try surgery before an egg retrieval, because Dr. Miller thought he could clean me out and then we could try to conceive naturally or with clomid as he didn’t think the endometriosis was as bad as it turned out to be. However, during surgery he found stage 4 endometriosis on my ovaries and appendix. He removed my appendix and did what he could on my ovaries in order to preserve them for IVF.
After my surgery, Dr Miller said that the endometriosis had been there for quite awhile because the cysts were so fixed to my ovaries. He said he did what he could to minimize the cysts but he couldn’t get rid of them fully because that would ruin good ovarian tissue for IVF. After I’m done having kids, I can have another surgery to fully clean me out.
It was invaluable to have Dr. Miller as my surgeon and fertility specialist. The entire time he was focused on the goal at hand- to have kids. I felt comfortable during the process that he knew what to do during surgery to make it possible for me to have kids.
After surgery, we started preparing for IVF and I had my egg retrieval in July 2021. We ended up with 4 well graded, untested embryos after retrieval. My first FET (frozen embryo transfer) was in September 2021 and unfortunately ended in a chemical pregnancy. Shortly thereafter, we did another transfer and I gave birth to my son, Leo, on August 11.
Going through infertility takes a toll on you emotionally and physically. Here are a few pieces of advice I would give to other women dealing with infertility.
- Keep going even when it feels like you can’t do/go anymore. The little victories will give you strength. For example, the recovery from retrieval was brutal for me, but when we found out we got 4 embryos, I felt like I could do it all over again.
- Ask for help and allow help from others. I am the most organized person out there but I had to have my husband take the reins on the meds because it was all too much for me. I never prepared, mixed, set up, or gave myself one shot!
- Don’t change your lifestyle. Dr Miller never once told me what to eat, drink, do, or not do. Working out was limited with retrieval and FET, but that was the extent of it.
- Take the month off and go on vacation. Dr Miller wrote in my message on the portal that this was a must! You have to continue to live your life as best as possible!
From Endometriosis to Appendix Cancer: How I conquered both
(This patient suffered from endometriosis, but it wasn't until surgery that she discovered she also suffered from appendix cancer. The following is her story.)
I suspect I had endometriosis from the time I hit puberty on. While I complained about my symptoms to my gynecologist, she kept insisting my periods were normal. But I knew there was nothing normal about missing a quarter of school and work from the time of puberty to diagnosis.
When I was 21, I ended up in the emergency room with a burst 10x10 ovarian cyst. The doctor on call performed the laparotomy. Afterwards, he gave me a diagnosis: I had endometriosis. It was so obvious. The symptoms were typical. Debilitating pain that just doubles a person over. Heavy period flow that ruins underwear and ruins pants. Even after being put on birth control for endometriosis, the spotting was bad enough that I learned not to wear white pants.
After the stint in the ER, the doctors and I tried to regulate my periods. I went from one birth control to another to another. The pills never worked. I tried Depo Provera which worked best, but switched to Nexplanon (because of the way it was regulated). That’s what I’m on now. I wish that girls weren’t being taught that freakishly heavy periods are normal. Educators need to teach them about endometriosis. Their doctors should take their complaints more seriously. Too many shouldn’t suffer.
Because I was on birth control, the doctors said the odds of endometriosis returning were slim. Fast-forward 10 years from my original diagnosis. I was, once again, experiencing pain. The doctor doubted it was endometriosis, but theorized it was scar tissue and an ovarian cyst.
After my doctor and several people from a Chicago endometriosis Facebook group recommended that I visit Dr. Miller for surgery to remove the scar tissue, I made an appointment. Dr. Miller agreed that my pain was probably the result of scar tissue, but not endometriosis returning. But I couldn’t function normally with all the pain. I just wanted to get on with my life. He made a plan for surgery to remove the scar tissue, so I could get on.
Incidentally, another endometriosis specialist I had visited didn’t think surgery was necessary. Thankfully, I had decided to go forward with the surgery with Dr. Miller. Because, after I woke up from my surgery, I learned that the pain came from my appendix. According to Dr. Miller, it looked abnormal, was enlarged, and had a mass at the end of it. Dr. Miller had to perform an unexpected appendectomy.
A few days later, there was a message on my answering machine to get into Dr. Miller’s office immediately. I knew something was wrong.
Dr. Miller told me there was mucus in the appendix and that I should follow up with a colon specialist soon. He knew something was wrong, but he wanted a colon specialist to confirm it and break the news to me. The colon specialist told me: I had appendix cancer. I was only 31 years old.
The scary thing is that, not only is appendix cancer incredibly rare, I was totally asymptomatic for appendix cancer. I had trouble with constipation, but I had chalked that up to 10 years of scar tissue from the endometriosis surgery. Most symptoms don’t show until it’s fairly developed. I was so lucky that Dr. Miller caught it in the early stages. My oncologist has repeatedly told me that it’s never diagnosed this early.
With Dr. Miller’s help, I was able to retrieve and freeze eggs before my surgery for appendix cancer.
This year I celebrated two years of clean scans. The scariest time is over, according to my oncologist, and he doesn’t think the cancer will ever come back. Where am I now? I have that much more hope, yet fear and uncertainty for the obvious reasons. There’s that sense of gratitude, knowing only a miracle can account for the fact I was diagnosed unusually early. There is not a day that goes by I don’t think of how truly blessed I am, having Dr. Miller and all these physicians as my guardian angels looking over me.
The Fertility Diet: Can It Boost Your Fertility?
A healthy fertility diet is one of the first things I mention when couples ask about what they can do to help achieve pregnancy. For that reason, I was interested in an article USA Today published last week discussing the fertility diet. It’s a plan based on research from the Nurses’ Health Study, one of the largest and most comprehensive studies on women’s health.
For years, I have been telling my patients to follow a diet high in protein, vegetables, fruits and iron, and low in fat and carbs. The fertility diet goes into more detail, which I certainly do not disagree with.
The study detailed steps for improving fertility through changes in diet, weight and activity for women with ovulation-induced infertility.
Here is a list of the top 10 recommendations from the fertility diet:
- Avoid trans fats. Eating trans fat raises the level of your LDL (bad) cholesterol, according to the Food and Drug Administration. It’s one of the reasons the FDA has ordered food manufacturers to phase them out.Trans fats are found in fried foods (like french fries) and in baked good (like cookies and cakes).
- Consume more unsaturated vegetable oils. Monounsaturated and polyunsaturated may help improve your blood cholesterol, according to the American Heart Association. Add more olive oil and canola oil to your diet, and try to consume healthy fats from foods like fish and avocados.
- Get more protein from vegetables. Instead of a serving of steak, consider a serving of lentils.
- Eat slow carbs. Choose whole grains, oatmeal and vegetables, which are not highly refined, over carbs like white bread and pasta, which can increase ovulatory infertility (meaning irregular ovulation or lack of ovulation).
- Make it whole milk. If you’re trying to get pregnant, a fertility diet consisting of whole-fat diary is the best choice. Opt for whole milk over skim, and enjoy a small dish of ice cream or full fat yogurt each day.
- Take a multivitamin. Folic acid (400 mcg) and vitamin B are essential. The CDC says folic acid helps prevent birth defects.
- Don’t neglect iron intake. Get plenty of iron, but not from red meat. During your fertility diet, eat vegetables high in iron, like spinach, and consider taking an iron supplement.
- Drink water. Skip the soda. Everything else (coffee, alcohol) in moderation.
- Get to a “fertility zone” weight. Being in the “fertility zone” means achieving a BMI of 20 to 24. Weighing too much or too little can affect your menstrual cycle.
- Be active. If you don’t exercise regularly, starting a workout plan could help your fertility. If you’re already active, be careful not to overdo it. According to Resolve, low body fat can affect ovulation and fertility.
The number one recommendation listed is for the use of trans fat to be drastically reduced and I must stress how important that is. I become especially concerned with a diet of excess fat and carbs when women have a hormonal imbalance related to polycystic ovary syndrome (PCOS).
I am somewhat surprised, however, with the recommendation of whole milk in the fertility diet, given the increased fat content. While it probably does not impact the normal female attempting fertility, it could have a negative effect on patients with PCOS. Dairy may even have a negative effect on endometriosis.
The PCOS patient may not only be impacted by the high fat in dairy but also by the sugar content as well. Women with PCOS have hyperinsulinemia (thus metformin is helpful). The high sugars can cause exaggeration of insulin output and long term, which can lead to weight gain. Glucose levels fall and have an impact on the menstrual cycle and egg quality.
Below is a list of foods to avoid in the fertility diet, because they can increase inflammation and may negatively impact endometriosis and subsequent fertility.
- Processed and packaged foods
- Sugar
- Gluten, white bread, and wheat
- Dairy products
- Meat (especially red and processed meats)
- Alcohol
- Fried foods
While this suggested fertility diet may not be the magic bullet couples are seeking, it is certainly a step in the right direction. Of course, every woman if different, so it is very important to talk to your physician regarding your diet.
In Good Health,
Dr. Chuck Miller