I had just graduated in May 2012 with my dual master’s degree and started a job that July as a Business Development Manager for an Imaging company. My day to day consisted of driving to visit doctor and chiropractor offices to build relationships and get them to write their scripts to our center. I should also mention that I was bartending nights and weekends because I was hustler like that. 😊
That same month, I remember being out for a birthday dinner and I noticed this dull but constant pain in my lower right pelvic area. It was so painful just an annoyance. I had no idea where it came from and as the days went by, the stronger the pain got – felt like I was getting stabbed over and over again. I had prior pelvic pain in the past but from what I was told, I had cysts bursts, which is so excruciating, but once they rupture, the pain goes away. Not a fun experience either, I might add. One night when I was waitressing I had to go in the closet and cry and almost went to the ER because you literally can feel something rupture inside.
This new pain lasted about two weeks without letting up; just being and then it magically disappeared. A couple weeks later, it came back stronger than ever. I went into work doubled over and they told me to go home. Unfortunately, that was my last day there. The pain was debilitating and pain killers weren’t helping. I could barely get up off the couch the next few months. I couldn’t work out and I experienced insomnia. I went from being active, fit, and healthy to a lazy bum binging Netflix and in constant pain.
I was in a different ER every other week. I wanted someone to tell me what was wrong so I kept going to different hospitals hoping someone would have an answer. Even though I could barely walk and was in tears from the pain, I was always discharged because all my tests came back great and I wasn’t dying. In between the ER visits, I saw 19 other doctors including GI, OBGYN, and family physicians to try to find what was wrong. Everyone would say that it wasn’t an issue they dealt with and would direct me back to another specialist. I got bounced all around trying to find answers. No one could explain the reason for my debilitating pelvic pain. I felt like I was getting stabbed and being ripped apart all at the same time. After 2 months, which felt like years, I finally found a doctor who said he thought he knew what I had and recommended laparoscopic surgery. He wasn’t the nicest doctor, to say the least, but I was desperate for anyone to help me.
After scrambling to get insurance so that this doctor could perform the procedure, I was hopeful for answers.
I woke up in the OR at the end of my procedure. Apparently, I have a super high tolerance to drugs. As I lay wide awake in post-op, patiently waiting for the doctor to come check on me, he never came. My surgery was supposed to be outpatient but the pain I was experiencing in post op was too much for me to handle. The pain medication was barely taking the edge off. They transferred me to a recovery room, and I was in tears trying to get from the bed to the bathroom. I was told they couldn’t give me any more medicine and the nurses told me someone would be in shortly. The anesthesiologist ended up stopping by and I begged him to prescribe me something stronger. He approved that as well as an extended stay. An outpatient surgery turned into a 2-night stay. The pain was beyond unbearable and I’ve given birth naturally, twice. I think I can handle pain pretty well.
When I had my follow up with the doctor, he diagnosed me with stage 4 Endometriosis (the most severe), Pelvic Floor Dysfunction, & Pelvic Congestive Syndrome. He said that he performed ablation and cauterized the endometriosis. In other words, he went in and burned off all the endometriosis he saw once he was in. He also said, “it was a shame they didn’t have da Vinci.” I had no idea what that was until later so let’s pin that for now. Endometriosis is a condition where the endometrial lining in your uterus grows outside the uterus. It also doesn’t show up on any type of scans which is why you need laparoscopic surgery to confirm.
I was not only in pain from the procedure, but I felt that I didn’t have much relief compared to before the surgery. He put me on continuous birth control to manage the pain which I had never wanted to do in my life because it was not natural. I was desperate and people do things they normally wouldn’t do when you aren’t given many options. A little after 2 months post op I was still in pain. I was taking Dilaudid and it was barely helping. After another visit with the doctor his only advice was to throw the Dilaudid down the toilet and said I was addicted to them. I walked out feeling defeated. I just didn’t want to be in pain anymore. I absolutely was not addicted. I only took them when I was in dire pain but it barely helped so I didn’t want to be taking it all the time putting it in my body when it didn’t do much for me. I wanted to feel normal and be able to go back to my life. I was still out of work and semi-depressed at this point. I resorted to drinking. It helped with the pain or at least helped me forget about the pain.
A friend of mine worked with a radiologist who she highly recommended. He was genuine and understanding. A complete 180 from the first doctor I worked with. He truly seemed to care and wanted to help. He specialized in Pelvic Congestion Syndrome, a chronic condition where you have varicose veins in your pelvis which cause pain. I didn’t know at the time, but my diagnosis was not recognized by all doctors as a real diagnosis. Some people don’t believe it’s real. Go figure. About 3 months after my initial surgery, I had my second one which was way less invasive. He performed a left renal vein embolization (platinum coils in the varicose veins). I was awake for this one and I remember him telling me he couldn’t get the catheter through and almost gave up. Luckily, he finally made it and 3 days later I felt like my normal self with no pain! I was in shock. I was excited to start living my life again. I had taken a new job that didn’t require me to travel all day and was able to work out again. Everything seemed to be great, pain wise. Now if I could only lose the 20 pounds I had gained drinking and stuffing my face with crappy food. My insurance ended up claiming this procedure as “exploratory” and it wasn’t even covered. Hello, $20,000 bill.
A few months later the pain started to come back and I was back at square 1. Back and forth to another 15+ OBGYN’s to try and get different opinions. One of the biggest challenges through all of this was that a lot of OBGYN’s didn’t specialize in my condition and the doctors that did, were so focused on solving the current condition that they didn’t necessarily have an interest in making sure I could have children down the line. I left a few OBGYN’s crying as they told me I could most likely never have children.
I was told my options were: continuous birth control (which I was on and having issues with that), go on a very strong drug – Lupron (males take this for prostate cancer) to make me go into menopause and would only suppress my systems temporarily, and/or continue to have surgeries every 6-12 months to cut out the tissue. Those options were so scary to me and by this time I had done a little bit of research on endometriosis. What no one ever told me was that endometriosis is similar to cancer where it keeps growing back if you haven’t fixed the underlying problem causing it. The underlying problem is a hormone imbalance – predominantly estrogen.
I just didn’t understand why none of the doctors wanted to find or fix the root problem. It wasn’t even discussed. Doctors only had an interest in treating the symptoms. I felt like all my options were band-aids and at best, only temporarily solve my problem but at a high cost. I came across women who had taken Lupron and warned me of the side effects. I read more about the long-term effects online from other women’s stories. Strangely, I happened to randomly run into women during the next year who had Endometriosis. I found out more and more that this was a problem a lot of women suffer from. One girl told me she’d been having surgeries every 6 months for the past 3 years. I was mind blown and deeply saddened. That can’t be normal!
I came across this practitioner online who was certified in Arvigo Maya Abdominal Massage. There were only two people in the entire state that were certified at the time. This type of massage helps restore the body to its natural balance by correcting the position of organs that have shifted and restrict the flow of blood, lymph, nerve, and chi energy. I figured it would be worth it if she could help since doctors didn’t seem to be working out for me. She thought that the scar tissue as well as potential new endometriosis may have pulled my uterus over as she said it wasn’t centered. She guided me on how to feel organs and showed me how to gently move them. Pretty strange, I know, but it certainly was interesting. I learned a little more about my body through this unique experience. I only did one visit and tried to incorporate abdominal massages into my weekly routines. I saw a small change but not enough to make a huge difference.
I had learned that there were 3 standard surgical procedures that could be done for endometriosis and the best one being – robotic surgery. Let’s go back to the comment the initial doctor had said after my first surgery. Da Vinci is a robotic surgical system designed for more precision and is minimally invasive. The three types of surgeries you can perform for endometriosis are ablation, excision, and robotic surgery. Doctors never explained any of options to me. I had to do the research. It would have been nice to understand all my options and if one might be better than another option but all I got a comment after my procedure to say too bad the hospital didn’t offer robotic surgery. How nice to say that to someone after a surgery.
I figured if I was going to go through this again, I needed to find a highly rated, top doctor who knows what they’re doing and specializes in endometriosis. I didn’t want to have any more surgeries. I was worried about cost. My first surgery wasn’t fully covered because they said it was a pre-existing condition and I had stayed 2 nights when it should have only been outpatient. The bill was over $80,000 out of pocket and then then of course there was the second one at $20,000. I sought out a specialist in NYC. It was a hike to get there – taking public transportation and taking off work all while being in pain but I prayed it would be worth it in the end.
I ended up finding a doctor in NYC who had a different approach where he looked a little more at the entire person to help and who specialized in pelvic pain as well as endometriosis. WIN – WIN! The doctor had a statistic that after his surgery, there would be less than a 40% chance I would need another surgery in the next 5 years, which made me hopeful. My mind was set that this would be my final surgery. I would not allow myself to continue to go through another surgery and I was determined to find any other way possible to heal myself.
The day I was scheduling my surgery, I made a call to a family member. I was pacing the hallway as I was torn on getting yet another surgery, but I really felt it was needed. She advised me that I could change my diet and I didn’t need this surgery. I didn’t believe my diet had anything to do with the pain. There was just no way it could solve all my issues. I had pain every day. I was already raised vegetarian and thought I ate healthy since I never had meat, fish, or eggs in my life. What would cutting soy out of my diet really do for me? I brushed it off and said I would look into it but I just need to cut out the endometriosis that is already there first.
I ended up going through with my third surgery 10 months after my second procedure. I woke up with 6 incisions, no appendix, major nerve cut out, and all endometriosis robotically removed. So much for minimally invasive.
I did feel better post op compared to the first surgery, but I still couldn’t kick that dull, constant nagging pain. I was prescribed lidocaine patches and put on progesterone only pills and after a few months the doctor also recommended I find a physical therapist who specialized in pelvic floor.
In searching for a pelvic floor therapist there were only a few choices that were within a 30 min distance. I called a few and all of them were out of network and charged $150 a session with the initial consultation at $300. ☹ I walked into a physical therapist’s office with very high expectations that she would be able to help me. This had to be the answer! I had done everything else. Sadly, I ended up walking out of her office in tears. She basically told me that she didn’t believe I had a pelvic floor issue. I was crushed. I had really thought she would be able to help and there was no way I wanted to undergo another surgery. I felt so alone but I was reluctant to reach out to any other physical therapists.
Pain would come and go but it still affected my quality of life. I wanted to find anything alternative that would help so that I could avoid any additional surgeries. After a couple of months, I got up the courage to seek out another pelvic floor therapist. That was one of the best decisions of my life because the woman I ended up meeting was a true-life saver! I went into my initial visit having ZERO expectations because I didn’t want to be disappointed. She welcomed me, made me feel comfortable, and gave me so much hope. She is not only amazing at what she does but also just a beautiful person inside and out. I worked with her for a little under a year and am still friends with her to this day. 😊
In between pelvic floor therapy, I went to three OBGYN’s who all mentioned the same options as I had been receiving and I realized that going to any other doctors would be a waste of time. Physical therapy really helped me. I would still get days where I would be in crippling pain but a good amount of days, I would be pain free! I had stopped taking narcotics and the lidocaine patches.
I did hours upon hours of research to see what else could help me fix the root cause and I decided I needed to change not only what I put in my body but also on my body. I learned that food was so important and every little thing you put in your body had a major impact. I committed right then and there to changing my lifestyle. I started with a 1 month cleanse; eating only raw foods and juicing. At the same time, I stopped taking all medications I was on – birth control and vitamins. During that month, (I’m not perfect) I totally cheated and had that soft warm bagel with cream cheese and another day it was a slice of pizza from my favorite pizzeria. My work would bring in lunches at the end of the month and it was tempting and tough to resist. The crazy thing is I instantly had pain minutes after eating that crap. It was really eye opening to see how much food could affect my pain. I literally had to go through it in order to believe it.
The problem with gluten is that one – most of it is genetically modified but it also expands in your body which causes bloating. Once I finished with the cleanse, I slowly introduced food back into my diet. When I had fake meat, which is comprised of processed soy and wheat gluten, I also had pain immediately after consumption. I learned how too much soy can cause hormone disruption. It produces excess estrogen in the body which can lead to a hormonal imbalance. For me, I found that my two biggest triggers were gluten and soy followed by dairy.
I now understand that even though I thought I was eating healthy, I wasn’t really healthy. Even though I was vegetarian, I grew up on heavily processed foods. I ate “fake meat” at least once if not twice a day which is why I never noticed food being a trigger because it was something I ate at some point every day.
I eliminated gluten and soy from my diet immediately but dairy was tough to cut out. Not even all dairy; just cheese. I was already drinking alternative milk and had vegan butter but cheese was just so difficult for me to stop or replace from my diet.
I felt better and better with the slow changes I was doing, but I still experienced severe pain that would come and go. I found yet another specialist at a reproductive center and she recommended I do in-vitro if I was still in pain by the end of summer if I had planned on having children otherwise she would recommend I go back on birth control. I was not in the best situation to make that big decision and I absolutely felt pressured to choose. I tried not to let it consume me and I started reading labels and learning more about products I was using that were known to be hormone disrupters.
Within 4 months from my lifestyle change, I was pregnant – completely natural and I wasn’t even trying. I never thought I could even get pregnant so it was exciting but very unexpected. I now began to be crazy concerned with the products I was using on my body and around the house. I switched all my cleaning products, detergents, soaps, lotions, toothpaste, beauty products, and make-up. Slowly one by one in each category switching over to natural nontoxic alternatives.
Due to the hormonal change from pregnancy, endometriosis is at bay. However, once my first son was born, I started to have endometriosis pain come back. Around 2 months after he was born, I made a new commitment to eliminate dairy. This was totally overwhelming at first because I wasn’t a fan of store-bought cheese – not only did it not taste that great but it’s also heavily processed. I started my trial and error of making vegan cheeses. It wasn’t an overnight process at all. Not only did I eliminate dairy, but throughout my entire transformation I also transitioned into a plant-based diet eliminating as much processed food as possible. I slowly began to switch over everything in my pantry. As soon as I was done with an unhealthy item I would replace it with a more natural, organic option. By 9 months postpartum, I not only lost all my baby weight but then I lost an additional 20 pounds which had me at a lower weight than before I had all my endometriosis pain.
Once I cut out dairy and processed foods I was no longer in pain. I had to stay away from soy for a very long time. If I ate too much in a short amount of time, I would have a flair up. Now that it has been over 2.5 years, I am now able to have tofu on occasion with no issues but I had to heal myself first. I can confidently say that I was able to cure my endometriosis pain from lifestyle changes. I also don’t crave any of the food I used to eat. You could put a pizza slice and ice cream in front of me and I would not want it. It takes time but I feel so much healthier. I realized it wasn’t worth it to eat foods that caused damage in my body and to be in pain.
That is my journey for how I got to where I am. I continue to learn more every day. What worked for me might not work for you and you need to find out what works for your body but I want to share as much information as I can to help and empower others to make informed decisions. I was so upset that I underwent 3 surgeries that may have been totally unavoidable if I had the information and knowledge I have now. I can’t dwell on the past but I can share my story with others and hopes it help them on their journey. I believe everything happens for a reason.