I don’t know what you’re dealing with…but if you’re anything like me, you’re probably scared and in pain. You feel like you’re going crazy, and maybe you just want to give up. You probably feel so alone and like no one truly understands, like it’s all in your head. You may even feel that if this is life, it just isn’t worth living. Based on what you’re going through, it’s an entirely logical response to feel these things. You’ve probably been examined by several doctors and they’ve all told you that you’re fine and that there’s nothing wrong with you and that you’re “perfectly healthy”…reaffirming to you that it’s just all in your head.
I know firsthand what it’s like to feel those things. Almost every day. For 14 years. But I don’t feel them anymore. My hope for you as I share my story is that you would be able to relate, that you would see yourself in my story, and that you would see that you’re not crazy, that there are answers for what you’re going through, and that you would begin to hope for the healing that is available. You aren’t alone. Thousands of women are in similar situations and think they’re going crazy and that no one will ever believe them. But it’s not true…there are resources out there for you, and I’m here to tell you that they work. I’m living proof! You can get help, today.
My symptoms first started around a year after I had my first cycle, at around 15 years old. Severe abdominal pressure would give way to crippling abdominal pain any time I would do even gentle exercise. At times, I couldn’t even function because the pain was so bad. This brought lightheadedness as well and I would almost black out until the worst of the pain passed. One time, I remember doubling over in pain on the side of the road hoping to wave someone down so I could get help because I couldn’t even walk back home. I became fearful to go for jogs for fear I would be stranded. Cardio exercise in general seemed to cause pain and jarring; but I often would do my best to push through, thinking it was normal. As the years wore on, no matter how hard I pushed, I was always limited in exercise by the pain, lightheadedness and nausea that would inevitably come. As someone who thrives on exercise, it was maddening. My body wouldn’t let me do what I wanted to stay in shape. This abdominal pain grew more severe and became an almost daily experience the longer I went untreated.
The brain fog came on gradually as well. Mental clarity and focus seemed next to impossible. Then the headaches came. They worsened until they became occasional migraines…which slowly increased until I was having one almost every day and was forced to curl up in a fetal position, take as much medication as I could, block out all light and noise, and just wait for the pain and nausea to pass.
The fatigue, however, was one of the worst symptoms. It slowly developed to the point where I couldn't even function in the evenings. I struggled to stay engaged with anything throughout the day, just wanting to lay down everywhere. I lost any energy that I once had. I had played sports competitively and worked out regularly…but even simple tasks became massively difficult as the years went by— showering, getting dressed, sitting up to eat and brushing my teeth. But I wasn’t sleeping well either; so strange because I was always tired and falling asleep but waking up feeling extremely drained and exhausted. The lack of sleep snowballed into getting sick regularly as my immune system was in such terrible condition. Sickness that would take others a couple of days to beat would take me a week or more. My record was catching 7 bugs/viruses/colds in 2 months back to back! But because all the doctors said I was fine…well, I thought was simply lazy and not washing my hands enough.
Throughout the years I have had several occasions that now I know were probably ovarian cysts bursting. We would rush to the ER, get every test imaginable, and they would say everything was fine and send us home. I would be bedridden, in excruciating pain, for 2-3 days until it passed. This happened several times and we eventually stopped going to the ER because we knew they would just tell us that nothing was wrong.
When the symptoms first started, my gynecologist and PCP immediately wanted me to start on birth control and never considered endometriosis as a possible diagnosis. They would immediately push that suggestion aside and even recommended anti-anxiety and antidepression medication. I saw a pulmonologist, a cardiologist, multiple gynecologists, rheumatologists, gastroenterologists, etc…over a dozen doctors…and no one could help. I had every test run that you could think of. The symptoms would continue even though my bloodwork always came back “normal.” I came to the conclusion that everybody must deal with this too and that I needed to just push past it. Along with many of these symptoms, I looked around at others and saw how easy and enjoyable life seemed to be for them. This caused me to turn more inwards and become severely depressed, to the point where I just didn’t care anymore. Eventually, life didn’t seem worth it, and I just didn’t want to be around if this was what life would be. Desire for anything ceased and I just stopped wanting to live.
I’m a strong believer in the Lord and have desired to take His name to all the nations for the past 15 years; to be a tribal missionary out in the remotest jungles. I didn’t understand why I felt this deep burden so strongly only to be stuck in bed. I seemed to be put on the back burner or “benched.” But that’s fine, because I knew I would go to heaven when I died. I could be with my Savior and have a new, healthy body.
But everyday God gave me strength to choose to breathe, to live a little longer. Getting on an antidepressant helped the suicidal thoughts to disappear, but the chronic nature of depression continued to have a hold on me. In the end, it was hard to tell whether the fatigue was the debilitating factor or whether I had just lost all motivation and desire to go on. I spent most of that year in bed or reclining - my eyes distant and empty and my heart heavy and saddened beyond expression.
This all changed when I met Dr. Yeung. He validated my years of suffering and walked me through my treatment options. After a long excision surgery (I had extensive stage IV Endo and needed a bowel resection as well), physical therapy and diet and lifestyle changes, everything I described above is no longer a part of my life. All those symptoms are gone. My life is completely different. I have energy for the day and my excitement for life has returned. I am 100% pain-free. I got my life back…no, actually I have a new life, because I’ve never enjoyed a life like this as an adult.
It’s such a new thing for me to not feel any abdominal pain! In fact, the only symptom that makes me aware of my cycle is the bleeding…minimal to no cramping and really no pain! I am just as active on my cycle as any other time of the month. I literally didn’t believe this was possible.
My strength is increasing every day. I jog every day with no pain and it has been an exciting journey to see my body fighting with me instead of against me. I am able to fend off illness with my stronger immune system and I don’t feel the horrible reality of my body limiting me like I did for so long. I can now make it through the day without feeling exhausted all the time. I am sleeping better and I have the desire and ability to move through my day, getting stuff done…simple tasks are no longer draining. I no longer have to choose whether I will shower or wash the dishes because of my extremely limited energy. In fact, I have to choose which things are best to do because I don’t have enough time in the day to get done all that I want to accomplish! And we are back on track to head overseas as tribal missionaries in the near future.
The most amazing part of this journey is the miracle of getting pregnant with our sweet little boy! My body has healed so much that I was able to create a new life! He was ten pounds and born almost two years to the day of my big surgery to remove all the endo. What was most startling to me was that laboring naturally with no medication with a ten pound baby was less painful than having endo for all those years!
If my story has struck a chord with you, let me encourage you to do a few things. I want to see you healthy and whole and experiencing the same kind of life that I now am experiencing every day. I don’t want you to live in the same fog and maddening frustration that I lived in for so long. If any of my symptoms resonated with you, there is a way out. Personally, I wouldn’t want to trust anyone outside of Dr. Yeung with my life. But to my understanding, there are other gynecologists out there who are similarly experienced. Make sure you go to a gynecologist who specializes in endometriosis treatment via excision surgery.
Don’t give up. You’re not making up your symptoms. You’re not asking for attention. Don’t settle. You know your body better than anybody else. Don’t even think about the costs of medical care. This is your life we’re talking about! Be willing to travel to meet the doctor you choose…this is not time to be tough and just push through and settle for the cheapest option. Yes, my surgery was expensive. But we figured it out. And I have my life back. It was worth it! Really express how you’re feeling to the doctor, how your condition has affected your life. Be honest. Don’t give into the temptation that you won’t ever be able to get better. Keep fighting and keep pursuing the medical care that you deserve. Healing is possible. A pain-free life might be just around the corner for you. Don’t give up. It’s more than worth it.
It can be so scary and defeating living with endometriosis. There is so much pain, grief, loneliness, and shame as you battle it day in and day out. You can feel so lost at times as there are more questions than answers as you try to figure out your next steps and which way you should go.
Like most women, my journey with endo began long before I knew what it was or what to do about it. Looking back, it first began in high school. Painful periods resulted in me being put on birth control as a way to manage the pain. Though it seemed to help a bit, the painful periods continued and over time the pain became worse. Over the next several years, I resigned myself to the idea that periods were just supposed to be extremely painful and that everyone went through them like I did.
In 2008 at the age of 24, I married my husband. We both knew we wanted children and were so excited at the idea of becoming parents. In 2010, we began trying for a baby. I assumed it would happen right away for us and had so much hope as we began to plan for our little one. After a year of trying with no success, I went to my gynecologist, and after 2 office visits and a series of blood tests, she diagnosed me as “infertile” and told me that IVF was likely the best option for me. I felt so overwhelmed, saddened, and defeated as I left her office and cried to my husband in the parking lot. I went into a hole for the next year, avoiding any doctors and leaning on God as we continued to try for a baby.
Over the next year, my endometriosis pain became so severe that I was forced to finally face it. Severe abdominal pain, dizziness, cold sweats, sharp stabbing pains with movement, bloating, and constant pressure were becoming too much to take. For months I played the “wait and see” game- wearing stretchy pants, loose shirts, stooping over when I walked, holding my breath in fear with the pain of going to the bathroom, reclining my seat while driving, and sitting back down when the stabbing pain would come from standing up too quickly. I did this for months, until I could no longer take it. A trip to my doctor led to an ovarian ultrasound revealing two large endometriomas, one in each ovary. I was referred to a local gynecologist who was said to be knowledgeable in treating endometriosis, and after a 10 minute consult, I was scheduled for surgery with him.
The surgery was unsuccessful as the doctor tried to drain the endometriomas and cut out what he could see. He admitted only after that the endo was more complex than he was prepared for, and that my ovaries, uterus, and rectum were still connected to each other. After surgery, the pain was just as severe as before, and within 3 months, an ultrasound revealed endometriomas in each ovary yet again. At this time, we had been trying for a baby for 3 years, and only had enough answers to know that endometriosis was present, but was likely too severe and complex to be treated. I felt so depressed, defeated, and broken.
And then by the grace of God, we met Dr. Yeung.
Dr. Yeung did an ultrasound, thorough consultation, answered all of our questions, and prepared a team of surgeons and a game plan for my surgery. He was so knowledgeable, diligent, and kind, ensuring that all factors were considered and all questions answered. In October 2013, I had my surgery with Dr. Yeung. The surgery revealed Stage IV endometriosis, and using a specialized laser method for optimal excision, he removed the endometriomas, all visible signs of endometriosis, and was able to safely detach my ovaries, uterus, and rectum from one another while doing so. He additionally applied GoreTex (a material that prevents adhesions) to my ovaries while they healed from the surgery. The surgery was a great success, and for the first time in years I had hope. I no longer felt broken, and my body felt like mine again, healthy and whole.
Dr. Yeung introduced us to an approach to restorative fertility - also called NaProTechnology(R) - and a system of fertility awareness with the Creighton Method FertilityCare System(R). We were set up with a NaPro nurse who taught us how to use the system and chart cycles, and Dr. Yeung met with us in continued follow up to review charts with the goal of getting to the root of the infertility. He uncovered the problems causing the infertility and helped us (through hCG injections, medication, and timing) to achieve optimal fertility.
In April 2015, after 5 years of trying, and 18 months after my surgery with Dr. Yeung, we found out that we were pregnant with our son. Dr. Yeung continued to assist us by reviewing NaPro charts and consulting with us over the next few years, and with his help and God’s goodness, in July 2017 we became pregnant with our daughter (after only 6 months of trying). We were amazed to be parents to these two miracles. Then in February 2019 we found out we were pregnant again. This time, without the months of waiting and trying (what a surprise blessing he was)! If someone would have told me 7 years ago, before that surgery and first meeting with Dr. Yeung, that I would be the mother of three, pain free, with no evident signs of endometriosis, I’m not sure that I would have believed them. But I thank God every day that he led me on the journey that He did.
I am beyond thankful that we met Dr. Yeung - as he walked beside us on this journey, helped give us the gift of children, and has brought me to a place where endo no longer defines me.
Choosing Dr. Yeung as my endo specialist and surgeon, choosing to chart my fertility and a restorative fertility approach without IVF, and trusting in God were the best decisions we could have ever made. No matter where you are on your endo journey, never lose hope. Your story is not finished, you are not broken, and the best is yet to come.
For 8ish years I was told by countless gynecologists that my non-existent periods and excruciating “period pain” were part of being a woman and that I had nothing wrong with me. Unfortunately, I just took that as an answer and did not advocate enough for myself. It was not until June 2017 that I started experiencing severe endometriosis symptoms including pain with exercising, pain, and spotting with sex, severe back pain/kidney pain and much more. In September 2017, I met with a family practice gynecologist in Mississippi (where I lived at the time), the ninth doctor in 8 years. After explaining my symptoms and running countless tests, he stated that he thought I might have endometriosis. At that point, I had never even heard of endometriosis but when he suggested surgery, to be sure it was indeed endometriosis, and that he could get it out, I jumped right in.
Little to my knowledge at the time that was the worst decision I could have made. A week after surgery (a failed ablation) I was put on Lupron. After the 3 months of being on Lupron, I was at my wits end. All my pain was back and on top of that, I had horrible menopausal symptoms. I was crying multiple times a day, fatigued, super emotional, the hot flashes were terrible and I just did not feel like myself. I decided to seek a second opinion in Boston, at the Boston Center from Endometriosis. Again, instead of getting to the root of my pain, I was given Synarel- the nasal version of Lupron.
The band-aid approaches started making me very angry and I felt even angrier that I was taking multiple meds to counteract the Synarel and its side effects. I did as much research on endometriosis as I could. In May 2018, I stumbled across Nancy’s Nook on Facebook. After reading file after file, I decided that I personally felt I still had endometriosis ravaging inside my body and that something needed to be done about it.
I knew I was moving to Missouri in November 2018, so I sought out Dr. Patrick Yeung after seeing him on the Nook list and reading all the comments from other patients. In June 2018, I called to schedule a consult with Dr. Yeung, but I also mentioned to the scheduler that I had already had one surgery, a failed ablation and that I felt I would be in at least the 90th percentile for needing a second surgery. The scheduler agreed and I was able to get a consult scheduled in November and booked a potential surgery for December
Upon first meeting Dr. Yeung, one can tell how truly invested he is in treating patients with suspected or confirmed endometriosis. My husband and I sat through a long and detailed consultation with him going over everything from the first surgery, my lifestyle changes (including diet), and the current symptoms I was having. It was decided at the end of the consultation that another surgery was completely necessary.
On surgery day, the nurses and surgical team were so kind and understanding of my anxiety and nausea and made my experience much more pleasant prior to surgery. Flash forward 3 hours, while I was in the recovery room, Dr. Yeung spoke to my husband and parents, where they recorded him going over before and after images of the disease and excision (which I got to bring home and restudy them). I have come to find out after watching the recording; my body was infiltrated with endometriosis.
Waking up from surgery, I was in a lot of pain, but the nurses were able to manage that very well and I was soon in rest and recovery with my family and husband.
3 months post op, the pain was gone. I could not believe how much different and better I felt after this surgery than the first surgery. Surgery #1 (in Mississippi with a general OB), I could hardly move for a week after surgery, barely walking around and in a ton of pain. Surgery #2 (with Dr. Yeung), day 2, I was up walking around and truly feeling better, I could not believe the difference (it is scary not knowing what the first doctor did to make me feel so much pain). I have clear tubes, unadheared organs, and a cleaned-out uterus. I no longer have daily back pain, pain with urination and pain/bleeding with sex and exercise.
At one year post op from my excision surgery with Dr. Patrick Yeung. I had never felt better. I still had no pain, ever, no cramping pre or during my period and I had completely normal periods (which I did not have before). Post-surgery I did not need pelvic floor therapy and I did not go on any form of birth control. Knowing my husband and I wanted to start a family and under Dr. Yeung’s guidance and recommendation, I began natural family planning with the Creighton Model System. This system allowed me to track my fertility and every aspect of my cycle. It has also allowed me to become more in tune with my body than I ever had been.
After a couple months of tracking, it was clear something was not right and after some blood tests, we found out that I had a low ovarian reserve (AMH) and not ovulating.
Dr. Yeung and I (along with my husband) made a plan and went through the process of trying to treat my infertility. I started taking some medication and on the first cycle of Letrozole and METformin became pregnant with twins. Unfortunately, I was again moving and could not stay in St. Louis and see the doctors there. However, upon moving and finding a new obgyn, I was able to continue to stay in touch with Dr. Yeung through my MyChart and keep him up to date on my pregnancy. We even discussed what my OB could do during a C-section to reduce the chances of further spread of endometriosis.
Today, I have 10-month-old twin girls who are as vivacious as ever. I am still pain free, I have monthly cycles that are regular and virtually pain free and I enjoy being able to live my life to the fullest.