Endometriosis. My story.
You do not have to do this alone. You are not alone.
Laura Herrera
Oct 31, 2020·12 min read
Photo by Marc-Olivier Jodoin on Unsplash
Too many women’s lives are impacted by Endometriosis, which many doctors and this world do not fully understand. It is my goal to not only share my story and journey but to also spread yours in order for the medical world to take better action. Please read if you are a fellow endo-warrior and or if you are a loved one or friend of an endo warrior.
Hello, my name is Laura Herrera. I battled Endometriosis and its sister disease — Adenomyosis for 11 years. My journey has been a long one- full of pain, heartache, loneliness, hopelessness, love, survival, and strength. I hope my story helps you understand that you are not alone. If you have been on this journey trying to understand your diagnosis or if you have been questioning if you are battling Endometriosis- your story matters too.
Around the age of 23, I started getting sharp striking knife-like pains throughout my pelvic region. Within the first year, the pain steadily increased and I found myself vomiting whenever the pain became unbearably severe.
The first time I went to the ER it was due to uncontrollable vomiting that had me bent to its will over 15 times. By the time I made it to the hospital, my strength was gone and I could hardly walk or talk. My body in medical shock as it struggled to be at peace; sweat drenching my body due to cold sweats. It would be the first of Many ER visits over the years. This is how my journey began in 2006.
Throughout the years, I would go to the ER around 1–2 times per year. This was always when it was at its worst and I couldn’t stop vomiting. Early on, I began to know what my body could handle. I was usually able to withstand the severity of the pain and not let it show to the world. However, when it would get to the point that the pain would make me vomit and I couldn’t stop- I would have to go to the ER. I always counted the costs before going. This was because I didn’t have insurance for years. Before I was diagnosed, no doctor could give me answers, and honestly all I could care about while at the ER was stopping the vomiting and the pain.
The short end:
Took 7 years to be diagnosed
Countless doctors — at least 10
Multiple treatments and therapies to try to help with the pain
Total of about 17 ER visits over the years
4 surgeries within the last 4 years of the diseases
(total of 5 including my first surgery when I was 17 for a large cyst removed off of my ovary)
Thousands and THOUSANDS of dollars
After 7 years of going through debilitating pain and finally getting insurance; I had my first exploratory laparoscopy surgery. This surgery finally gave me answers after all the years I was searching for them. I was finally diagnosed! The doctor found my colon and uterus fused by Endometriosis scar tissue. As I sat in my hospital bed, I cried hysterically when I got the news. One- because I was finally relieved in knowing that I wasn’t crazy all these years and I now had the name of a disease that I could fight like a warrior. Two- because I didn’t know anything about this disease and the thought of my organs being fused scared me.
The doctor did not detach the organs because he said he didn’t feel comfortable in doing that type of surgery. He suggested I find a skilled surgeon to do so.
The next path on this journey had me going to multiple doctors and surgeons for options. Many of these doctors and surgeons warned me to not take the next step in doing another surgery just yet because it could lead to more scar tissue. I was asked to try other treatment options first by one doctor. He put me on different birth controls and an IUD was placed in my uterus to try to help with the pain and heavy bleeding. He had me go through pelvic floor therapy as well.
However, I still battled the pain. I still went to the ER due to vomiting and debilitating pain about 1–2 times per year. Even after these many treatment options.
Two years after the first laparoscopy, I had a second laparoscopy surgery. They detached the colon and uterus. However, afterward, both surgeons that worked on me told me they didn’t find any endometrial tissue. I was completely upset because it was as if they were both saying I was misdiagnosed. I knew I hadn’t spent all those years with a lie. I knew my body and the pain I had dealt with had an underlining cause.
I did not recover well from that surgery and knew something was wrong because I was still going through uncontrollable pain and sometimes vomiting and it was not getting better. 3 months of this, I regretfully decided to go through a lupron shot to help with the pain. The lupron shot basically puts your body in menopause so that you suppress hormones and in return, it should stop the pain. I at the time didn’t know the horrible side effects and that many well-skilled Endometriosis surgeons would never recommend it. This is because of the harmful things it could do to your body. This lupron shot only lasts up to 3 months and then you have to get another. Once you take two shots you CANNOT take another because of the HARMFUL things it can do to your body long term. This part is said by any doctor prescribing it. After the first shot wore off, I could tell that it was only a temporary fix for my body because I started getting severe pain again. I decided to do the next shot, but to my troubled heart, I made a choice that after the next one wore off -I would then get a hysterectomy. This was the last course of action that I had been told by countless doctors to consider. I couldn’t deal with the pain any longer and the idea of having to go through more hopelessness and going from doctor to doctor to try to get answers and help was too much to bear. I felt like my fight was over. I had at this point been battling this disease for a total of 9 YEARS and I was TIRED and WORN OUT. Tired emotionally and physically. I knew what my body was capable of after the next shot wore off and I didn’t have it in me to fight anymore. I told my parents that this is what I was planning to do. I also told my sister, who was a support system for me and my plan B to be a surrogate if I ever decided to go through with a hysterectomy or couldn’t carry my own child.
This is a gesture she offered to me the year prior. She told me that she saw a picture of a mom who became a surrogate for her adult daughter when she couldn’t carry her own child. After seeing that picture she wanted to do the same for me if I ever needed it. I responded and told her I had seen the same picture on Facebook months prior also and that when I did, I cried and cried. Just seeing the beauty of that kind of love and how at that moment I thought to myself, “I wish someone could do that for me if I need it.” Once she told me her desire to do the same for me, we both cried for a long time holding each other. Words can not express the gratitude and love I felt at that moment.
So here we were a year later and I realized my fight may be over. We all were on board and my family knew I just couldn’t keep living my life like this. The severity of the disease and issues it had caused in my life, on top of the unknowing of what it could continue to do and steal in my future- this seemed like my only option.
Now part of the reason I never wanted to make that decision and why I held onto fighting for years knowing this was my last resort-was because I hadn’t gotten married. I longed for a partner who I could make that decision with jointly. I longed for a partner to be by my side if we did decide I go this route. I also feared I wouldn’t ever be able to have my own child and no one would want me due to that. This fear was coupled with being afraid of a man not wanting to stay with me through the horrors of the disease was always too much to bear. As you can see, finally coming to a place where I was willing to make this decision alone without a partner- shows how I had given in the towel.
Thankfully, I had great friends who encouraged me to not make this decision without doing some research. They told me to find a true specialist that only dealt with Endometriosis patients. I then searched for the best specialists in the country. I made a leap of faith to travel from Virginia Beach to New York City in hopes of a doctor understanding what’s going on inside of me. I found Dr. Kanayama; he was my last hope. Just in our first meeting and the tests he performed, he was able to find more things going on inside of me than any other doctor had. He knew what to look for in a ultrasound and see what truly was going on. Prior to him, I had taken dozens and dozens (too many to count) ultrasounds and no doctor had ever been able to pinpoint anything. Not only did he see things in my ultra-sound, but he truly understood the symptoms I was having and asked me about things I may be going through even before I could ask him. I knew I was in the right hands.
He said I would need surgery and that a hysterectomy is not the way to go. One -I had never had kids. Two -hysterectomies don’t always cure the disease. He told me there is no cure for Endometriosis; however, the best option for treatment is through advanced excision surgery. This type of surgery roots out the disease and doesn’t leave any trace of it behind. Most women are only given the option of going through an ablation surgery, where they laser off Endometriosis. However, the rate of it coming back is extremely high because it doesn’t get to the root of the disease. There are not that many surgeons in the U.S. that are trained on how to do advanced excision surgery like he is.
During this next surgery, not only did he find Endometriosis, but I was at the most severe stage -Stage 4. He worked tirelessly on rooting out the disease everywhere he found it. This included on my ovaries, uterus, and on many intestines. The Endometriosis scarring I had, fused many of my organs together again (just months after the prior surgery that same year). He was able to separate wherever many organs were fused and he was also able to shift my uterus back into its normal position. Prior to surgery, it had shifted down to the right, pushing on my ovary. I had Endometriosis lesions near my sciatic nerve and he was able to root that out as well. The Mirena IUD I had inserted years prior had lodged into my uterus muscle wall and he was also able to remove that successfully. One of my fallopian tubes was blocked and he was able to open it. All of the above contributed to the pain I would suffer from.
After I came out of surgery I found out how successful he was in rooting out the disease and I cried hysterically. Words can’t describe how I felt at that moment. All the grief, sadness, heartache, pain — physical and mental, tiredness of fighting — all came out of me as I whaled with tears. This was to be my saving grace.
Unfortunately, during the healing post-surgery process, I still noticed I was having the same pain. My doctor and I both thought maybe it was post-surgery pain at first. However, as a few months went by and I still wasn’t getting any better and the pain was intensifying, we decided to do more tests. At that point the MRI showed I had Endometriosis inside the uterus. This is the sister disease to Endometriosis called Adenomyosis. My doctor said depending on the severity and locations of the disease inside the muscle wall of the uterus, I may need a hysterectomy. A hysterectomy is the only way to undoubtedly cure Adenomyosis because the disease is inside the uterus itself. Hysterectomies for Endometriosis don’t always cure Endometriosis because Endometriosis can many times be found outside the uterus on organs and ovaries. Even if the uterus isn’t in place. He was skillful enough to say, “Let’s go for another surgery and if I can root out the disease successfully in the uterus then you wouldn’t need a hysterectomy.” His goal was to get me out of pain finally, save my uterus and give me the chance to carry my own child someday.
In the medical field, most unskilled surgeons go straight for hysterectomies with Adenomyosis. Crazy enough, many who do surgery- diagnose Adenomyosis only after the uterus is removed and has gone through a biopsy. This is why going with a skilled surgeon and one that not only understands the disease but can successfully try to treat and root out the disease is so important.
The surgery was a success! He was able to save my uterus and root out the disease everywhere he saw it. When he cut into my uterus, a large cyst ruptured that was deep in the muscle wall. He said it ruptured like a volcano and this made him happy. I laughed when he said this. “Happy?” I said. He replied, “Yes because this showed me this was a large part of your pain.”
This surgery wasn’t done just through a laparoscopy, it needed to be done also through a bikini cut. He needed to be able to see the uterus with his naked eye and be able to get the disease out more extensively than just through a laparoscopy. Afterward, he said he basically reconstructed my uterus, because he had to do so much work on it due to the severity of the disease inside it. On an ultrasound weeks later, he showed me where I could see my stitches. They basically covered almost half of the width of my uterus.
Healing from this past surgery was more intense than the last few done through laparoscopy. This was due to me being cut in addition to combining a laparoscopy within the same surgery. However, even through the pain of healing and basically having to learn how to walk again after a few days from surgery, it was all worth it. Now 3 years later I am not going through any pain. My doctor made it clear to me in both surgeries that there isn’t a cure for Endometriosis, but it can be treated successfully. I can see how the combination of these two surgeries has truly helped me. I’ve been able to carry on with life, not having to bear a burden of worry of when the next bout of debilitating pain will be. I feel my life has been restored and I am so grateful.
I see him once a year for my one-year check-up and each time it has been confirmed that there still is no sign of either disease in my body!
I hope my story helps someone. I suffered for too long and many others are currently suffering. Now that I’m healthy and am physically capable I will stand up and fight for our rights in getting these diseases the awareness they deserve.
We need the medical world and the world itself to truly get a better understanding of these diseases, in order for many to no longer have to go through un-needed suffering like I did and that which so many are.
I may not have the answer for you or anyone else going through these diseases. And because every person’s individual case is different including their own individual symptoms etc.- all diagnoses can only be given by and treated by a doctor.
I battled these diseases alone and it was tremendously hard feeling so alone for so many years. I wish I would have known how to speak up for myself or help others understand what I was going through. I didn’t know how to help myself because no one else knew how to help me for so long. I also didn’t know anyone personally going through what I was going through. That would have been helpful if I did- at least I could have had an emotional support system, a shoulder to cry on and one to understand me.
Because of this, I will continue to write on topics that I went through in order to help others. I hope to bridge the gap between other endo-warriors with their loved ones, friends, and medical professionals. I know how overwhelming it can be going through chronic diseases and how hard it can be to emotionally deal with on top of the debilitating pain. Sometimes the emotional pain can be worse than the physical pain. I know how hard it can be hard to describe what you are feeling while going through it. Through the pain, the fears, the hopelessness, the tiredness of being at doctor visits, hospital visits/stays, endless tests, multiple surgeries, the blank stares from people in your family and friends, and doctors.
Friend, you are not alone. If you need to use my voice, please do so. Share any topics I bring up in order to help you through this with anyone you know.
What topics would you like me to discuss on?
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