Podcast: Living and Working With Endometriosis
Carol Harnett [00:00:00] Hi everyone, this is Carol Harnett. I’m the president of The Council for Disability Awareness. Welcome to our show: the Financial Health and Income Network. I am very excited to launch what we hope will be a continuing series with people who are working and living with chronic conditions, illnesses and diseases. I am so pleased to say that our first topic will be on endometriosis.
You can hear the full podcast or if you’d rather read than listen, we captured the transcript from the conversation below.
Carol Harnett [00:00:32] I’ve worked in and around healthcare my whole life, and worked around the data in healthcare my entire career, and I have never thought about endometriosis as a separate category. What brought it to my attention is my guest, Tawnia Jacobson. She is a nurse who has a master’s degree in Science with a concentration in Biology, and is also a Certified Nurse Anesthetist.
I often put firewalls between the different parts of my life. This is one of those times when I let the different parts of my life blend together. Tawnia is also my CycleBar instructor, and that is how I came to know her. She did something that I think has a high degree of impact for everyone around health and particularly for women with endometriosis.
During the month of March, which is an awareness month for endometriosis, she shared publicly through her Instagram account, her experience with endometriosis along with a lot of very important facts. The one that captured me the most is that 1 in 10 women in the United States have endometriosis, which is the same as the diabetes rate in the United States.
When we think about the amount of time and energy that we put around diabetes, which we should, we don’t put any time and energy around addressing endometriosis. So, Tawnia, thank you so much for being willing to join us today and talk with us and educate us on this topic.
Tawnia Jacobson [00:02:05.40] Absolutely Carol. Thank you so much for having me. This is an extremely important topic for everybody, but obviously near and dear to my heart with personal experience.
Carol Harnett [0:02:18.42]: For that reason, I want to turn a lot of the show over to you. I would love you to start, if you don’t mind, first with grounding people with a definition of what endometriosis is, and then your story as it relates to that.
Tawnia Jacobson [02:37.08]: Endometriosis, by definition, is a systemic disease that occurs when tissue that normally lines the inside of your uterus is found elsewhere in the body, mostly in the pelvis or the pelvic cavity. But it can also appear on the bladder, the bowel, the lungs (into the diaphragm) , and even the brain, in worst-case scenarios.
It causes pain, organ dysfunction, and infertility. The cause of endometriosis is unknown, but there are many theories surrounding it. Genetics, stem cells, blood and lymph system distribution are all possibilities. Inflammation is a key factor, and they believe that maybe some environmental toxins may be linked to it. Again, no definitive cause, and the diagnosis unfortunately takes a very long time. As Carol mentioned, the prevalence is extremely high, it’s 1 in 10 women. So if you yourself don’t have it, absolutely somebody you know has it or may not even know that they have it, but are experiencing signs and symptoms of having endometriosis.
A Challenging Diagnosis
Tawnia Jacobson [0:04:00.16]: A lot of people ask why it takes so long to diagnose and it’s mainly because most obstetrics and gynecology doctors themselves don’t even know that much about it. The average patient will see eight to ten doctors before they receive an actual diagnosis. After years and years of pain and suffering, many patients are told that it’s “in their head”, that it’s just “IBS” — irritable bowel syndrome — because so many of us have so many bowel symptoms that go along with this.
When it’s confused to be a GI issue, you might be sent away from your GYN (gynecologist), to a gastroenterologist and go through every process and procedure known to man for that, and really that’s not the initial cause. With a lot of confusion and pain, it becomes a mental battle and game for many patients and it’s very frustrating.
I can now back up and talk about my story.
Tawnia Jacobson | Symptoms: Pain, Heavy Menstrual Bleeding, Fatigue, Migraines
Tawnia Jacobson [0:05:05.25]: I would say that this whole thing probably started for me when I started menstruating at the age of 16. With heavy, heavy bleeding, I missed many days of high school. I was fatigued. I would get headaches. My mother actually had a history of very heavy periods as well, and had a hysterectomy at the age of 30 because of heavy bleeding. She couldn’t handle it anymore. At the time, whether they knew or not that she had endometriosis has really been left to be discovered, but it doesn’t matter. They performed a hysterectomy to treat her pain and bleeding, and that’s all I know. My mom kind of just said, “Yeah, I had really bad periods, too,” and we went about business and life. When I moved to college, the pain was worse. I would be knocked out for at least a week at a time in addition to the week of premenstrual symptoms.
One Solution | Birth Control
Tawnia Jacobson [0:06.10.01]: I finally started seeing a GYN (gynecologist) early in college who suggested birth control. She diagnosed me with menstrual migraines. She thought if we could even out my hormone swings it would prevent my migraines. Then, obviously, if I wasn’t bleeding, I wouldn’t have as much pain or symptoms of cramping and bleeding.
I went on birth control early on, probably by the time I was 19, and stayed on birth control for about 7 years. I came off birth control at about 2008; (we can talk a little bit more about how birth control can suppress endometriosis symptoms later).
Without being able to remember too much, in general, I just always felt crappy around my period. I was exhausted. There were probably days — many days — when I called out of work. But the bleeding was so intense that I would have to take extra clothes with me everywhere I went because I would easily bleed through what I had on.
Again, I was just always told it was normal. Even my GYN was like, “Yeah”, some people just get this. This is normal.” She offered me narcotics to deal with the pain. I never took them as I am not the type of person who would even take Ibuprofen regularly. So I spent a lot of time in bed, a lot of time sleeping with heating pads, and just dealing with it. This continued for years and years.
Next Step | Trying to Conceive
Tawnia Jacobson [0:07.45.76]: I think the next step in my journey came when my husband and I decided to start trying for a family. Probably around 2014, we became more active in trying. And even though I had been off of birth control since 2008, we were obviously not preventing pregnancy, but it hadn’t happened. But 2014 is when we started to try a little bit more actively.
I was feeling a lot more left lower quadrant pain, and I think once you become hyper-focused on your schedule and looking at a calendar all the time, you start to become very in-tune with your body. I was just noticing so many things. So I sat down and talked to my GYN about it. She said, “Let’s start by getting some labs and do an ultrasound, so that we can rule out cysts.”
At the time I didn’t have any signs or symptoms of ovarian cysts other than just pain which seemed to be focused in my left lower quadrant. Labs came back and showed that I had a low AMH, which is an Anti-Müllerian hormone. This test is fairly new. They’ve been using it maybe 10 to 12 years. So again, six years ago or five years ago, or however long it was I got this information, my GYN didn’t feel that comfortable with dealing with it. She said, “With this information, it means you have a low ovarian reserve, and I’m not really sure how to treat you moving forward. I need to send you to a fertility specialist.”
This was obviously devastating news, and not what you want to hear when you’re just starting your journey. But I thought, “Great! This is a specialist, somebody who is going to listen a little bit more to my symptoms and put a little more thought into my cycle and what has been going on for years.”
A Specialist, and Diagnostic Laparoscopy
Tawnia Jacobson [0:09.36.93]: We went on that journey, and have been on that journey for the past four years. It has been equal parts devastating and frustrating, but it was during that time that we all, as a team, made the decision that I probably most likely had endometriosis. The only problem was, the only way to diagnose endometriosis is via invasive surgical procedure. You have to have a diagnostic laparoscopy in order to obtain a sample of tissue to send to pathology for diagnosis. It was years of frustration and a lot of changes to my cycles, (very short cycles). Another thing to add is that after we were told we wouldn’t conceive naturally, I did conceive naturally. Unfortunately I sustained a miscarriage at about 10 to 11 weeks. It was at that point that my cycles seemed to be even more sporadic and painful. It was then that I finally said, “Okay, I have to do something, so let’s have surgery.”
In 2017 I had my first surgery by a fertility specialist who claimed that he could fix my endometriosis and get me pregnant. I trusted him and I went through surgery. Within three months, my symptoms were worse than they had been before. I was in a very ugly place mentally and emotionally, and I was begging for a birth control again because I said, “I can’t continue feeling like this. I’m not myself. It hurts every day.” It went from being painful a week to two weeks out of the month to three to four weeks out of the month. There were very few good days. I was keeping a calendar. I was keeping food diaries. It was consuming my life and it was miserable. So I begged and pleaded for birth control, and he talked me out of it because he said, “You are looking to start a family” and I said, “I understand that but this isn’t working.” So instead he put me on Clomid.
I took a course of Clomid hoping to get pregnant, but instead I ended up getting a grapefruit-sized cyst. Luckily it did not require surgical resection, but I endured many, many days of pain until it rectified itself. After that, I foolishly put myself on a course of DHEA hoping that would improve my egg supply for getting pregnant once again; not realizing that those are the worst things you can do for endometriosis.
Tawnia Jacobson [0:12.20.51]: By the fall of 2017, I was just in a really bad place. It was not good for my relationships. It was not good for my marriage. I knew that I needed to do something. I just didn’t know what I needed to do.
As fate would have it, one of my neighbors and I were talking one day. We had just built a house in a new development and she was a new neighbor. We were talking about infertility. She mentioned that she had endometriosis as well, and she led me down the path of Nancy’s Nook, which is an endometriosis education forum on Facebook that literally changed my life.
I went on there and I read for a couple of hours every day. I learned more than I ever learned about endometriosis in my entire life in about four hours, and it changed my life. It was Nancy’s Nook who educated me, who ultimately led me to my surgeon, who performed excision surgery, which is the gold standard for treatment right now. I had surgery last March and have felt like a new person ever since then.
Carol Harnett [0:13:34.05]: Wow, as I was listening, you probably heard me gasping because it’s incredible to listen to your experience in one fell swoop. I can’t imagine what that was like to live through.
Tawnia Jacobson [0:13.49.22]: I try to keep it as condensed possible, but it was many, many years of suffering, and many years going in the wrong direction.
I mentioned keeping food diaries. I changed my diet so many times. I had tried gluten-free and dairy-free. It was around that time that I actually got pregnant. Part of me was like “Wow, is that what it takes?” Then I eventually went vegan; I had cut out all meat. If you read a little bit more about endometriosis, you realize that they encourage an anti-inflammatory diet. A lot of that means getting rid of red meat. My husband and I tried vegan for a while, and none of this was helping any of my symptoms. It was basically just torturing me more mentally because it was all-consuming.
Finally, The Right Surgeon, The Right Procedure
Tawnia Jacobson [0:14.32.20]: I talked about meeting the surgeon who basically changed my life. It was the excision surgery that changed my life. It was the appropriate treatment. My first surgery was ablation, which means they burn the tissue. They don’t actually get rid of it, they just burn it, and hope to prevent it from growing back. The tissue, I guess it could be described as an iceberg. The tissue that you see is visible endometriosis, but lives much deeper than that. The part of the iceberg that you don’t see below the surface is actually the problem. You burn what you see, but you leave behind what you don’t see, and it will continue to grow. Since you’re in there basically irritating it, making it more angry, the endometriosis becomes worse. That’s why when I had my first surgery, within three to four months, I was feeling worse than I did before. We made it angry. Until I went to the correct surgeon and had the proper procedure done, my symptoms weren’t going to get any better.
Since having surgery, (a four-hour procedure), I was diagnosed with moderate endometriosis.
I did not have it on my diaphragm, Thank God, but it was covering much of my pelvic orifice. It was growing on both ovaries and wrapped around ligaments. I had right leg pain that nobody ever paid any attention to but me. I would live from day-to-day, working out regularly, and then I would have to take one to two weeks off of my workouts at a time because my right leg was bothering me so much.
When I found the surgeon who ended up helping me, he didn’t even bat an eye. As soon as I said “right leg pain down my back,” he was like, “Oh, yeah, your ligaments are involved.” And sure enough, when he went in there, the endometriosis was wrapped around my uterosacral ligaments. He had to dig down in there and clean that all out and I haven’t had any leg pain since surgery.
Carol Harnett [0:16:34.62]: You’re generous to share this. I know that when we look at data for why people go out of work and we look at their health data (we call it disability data), but it’s not the disability people think about. When we say disability data, we are almost always talking about illness or injuries that people have that prevent them from working — usually on a temporary basis.
Ablations and hysterectomies are procedures we’re seeing both in endometriosis and in perimenopausal women who are having difficulty with heavy bleeding. It’s interesting, too, because these procedures aren’t always successful in the perimenopausal population. I did more background reading so I could ask you intelligent questions. I read about excision surgery and was disappointed to find that there’s a limited number of surgeons in the U.S. who have the expertise to do this surgery.
Tawnia Jacobson [0:17.29.92]: About 150, I think, worldwide.
Carol Harnett [0:17:33.91]: Yes, I think there’s about 100 in the U.S. When you think about it, I assume they’re clustered in bigger geographic areas. I think about women who this might be a good solution for — at least a strategy to manage it — those who may have to travel to see somebody who’s able to do this procedure. This is concerning because that may exclude women of certain means to be able to do that. That always concerns me.
I actually didn’t ask you about this earlier when we started this show, or even when we’ve talked about this a little bit, but I think you referenced in one of your social media posts that there are some insurance limitations for some of the procedures. Did I remember that correctly?
Insurance Coverage and Financial Implications
Tawnia Jacobson [0:18.26.65]: Yeah, I’m going to be very careful with how I speak to this because I am not a professional in the industry. I can only speak to my personal experience, and I actually have a girlfriend who’s really going through a very frustrating situation herself with insurance regarding this. I can say from my experience, yes, my surgeon was out of state. He was technically out-of-network, which is true for many women who are searching to find an endometriosis expert to treat them because they are very few and far between. Many of them are grouped together, like you said. We’re fortunate in New England to have in New York, Massachusetts and Maine certified surgeons who are experts in excision surgery but, unfortunately, your insurance does restrict you being able to go out of state. Lucky for me, my insurance at the time had an out-of-network option. The hospital, the lab and the anesthesia services were partly covered by my insurance. Now the surgeon himself is paid out of pocket simply because he doesn’t get reimbursed for the procedure.
This is where I’m going to be very careful with how I speak. How I understand it is that there are basically no CPT codes for the excision surgery itself. They will lump it into the same category as ablation. My surgery was four hours long. My bowel was not involved, but many women do have bowel involvement which can sometimes involve a colorectal surgeon as well. So, if you’re in there 4 to 8 hours (sometimes 10 hours if you’re having diaphragm involvement as well) and you’re only getting reimbursed for an ablation procedure, which can be done in about an hour, you’re losing a lot of money. That is a lot of time, energy and expense being put out there that you’re not getting reimbursed for. I believe that’s why many of these surgeons require out-of-pocket pay.
Carol Harnett [0:20:39.22]: You have to save!
Tawnia Jacobson [0:20.41.84]: Yeah exactly. My surgeon offered a payment plan. You spoke about people traveling; he gets patients from all over the world. He had patients flying from India the week that I met him. He’s been doing this for 30 plus years so he is seeing people worldwide. It’s unfortunate because not everybody has the means to be able to do this. When I was going through the process of finding a surgeon and scheduling surgery, I had befriended somebody through social media who lives in California. She was suffering so much and could not find a surgeon out there who was local and in-network for her insurance. She was fighting the good fight. She was appealing every time I turned around and she was just hoping and praying that she’d be able to find some loophole to be able to allow her to have excision surgery. I can proudly say today that she finally did get surgery! She had excision surgery in December, but I was at the point where I was like, “Oh my God, I need to start saving money and fly her out here to see my surgeon,” because after I had surgery, I felt so much better. I want every person who is experiencing this pain to be able to find somebody who can help them because they deserve it.
Back to the insurance question -, my girlfriend is experiencing a very similar situation. She has had three ablation surgeries locally, at one of our local hospitals, and it’s not working for her. She needs excision and her insurance has denied her request, twice, to go see my surgeon in She’s still fighting, still trying to figure that out.
A Word About PPO Plans | More Options
Carol Harnett [0:22:19.74]: I’ll just add a quick point. I’ve been in and around insurance for the last ten plus years of my life, in addition to what I do at The Council for Disability Awareness., When you’re going through the open enrollment process, if your employer offers health insurance, (employers of a certain size are all required to offer health insurance) or have to go into the individual market yourself, it’s really important to make sure you’re in a preferred provider (PPO) plan. At least when you go out of network, it’s pricey (you have a much more significant copay until you reach your out-of-pocket maximum), but at least it gives you options.
This advice applies not just for this situation, but for all situations, particularly if you want to go to what we would call a “center of excellence.” I would consider 100 surgeons in the country to be 100 separate centers of excellence for how to treat this condition — endometriosis — by excision.
This is not a push for you to buy more health insurance than you need. A PPO health plan costs more money, but when you or one of your loved ones is impacted, you will be ever so thankful that you had options.
Carol Harnett [0:23:25.28]: I am looking at the clock and we have about 6 minutes and there are two questions I want to ask. You referenced a couple of times that when you were in high school you missed school and missed work. Something that The Council for Disability Awareness focuses on is how illnesses, injuries and diseases can impact people’s ability to work.
The most recent research article I could find was published in 2017. The researchers studied the impact of endometriosis on work and life and said that on average (and the range is enormous), women lose about 5.3 hours per week to endometriosis. Whether that’s being absent or unable to do something, or not being able to do it in the way they normally could.
Can you talk a little bit more about how endometriosis impacted your ability to work for certain, but also your ability to do things in your own life? I have met you as a very active person, so could you share with people what that is like.
Living and Working with Endometriosis
Tawnia Jacobson [0:24.51.98]: There were days missed from work, days where I had been up all night writhing in pain, or had a wicked headache and just felt terrible the next day and knew that I couldn’t function to my full capacity. That being said, fortunately for me, the worst of my symptoms developed about nine months before I had excision surgery and coincided with me taking a new position at my job. It was a leadership role. It was administrative. I was putting so much time and energy into my new role, that it was depleting me to the point where between that and my symptoms, I couldn’t function in life outside of work.
I think the new job gave me the drive to get up every single day. Even though I was miserable mentally and physically, I had a purpose. I got up and would work four days a week, but I would then come home and be useless. I would be on the couch with a heat pack taking more ibuprofen than I had ever taken in my life. Luckily, I had a husband who could pick up the pieces, but it wasn’t good for our relationship, and it was taking a toll on us. I just can’t help but think of women who are supporting themselves as single mothers, or women who are single and alone, and don’t have somebody to help them emotionally or physically.
I couldn’t cook, I couldn’t clean, and I didn’t do my own laundry. I was really kind of useless outside of work. I had the ability to get there and do that, but that was kind of my purpose in life. I’ve often thought about if I hadn’t taken that new job, where would I be because I think I would have given up. I think I wouldn’t have wanted to get up anymore every single day. It’s funny how timing works out like that. Prior to that position, I definitely missed a ton of work.
I definitely would call out. I said it used to be a week at a time, and I would feel crummy, but then it became three weeks out of the month. It was affecting me so much so that actually my words to my husband were: “I either have to find a surgeon who can help me or who believed my pain and my symptoms, or I have to be admitted to a mental institution, because something’s not right with me. I’m in a very dark place and I’m not myself.” Those words really sent the message home, and he was like, “We have to do something.”
Fortunately for me, my something was Facebook and educating myself. I said it to you before and I have said it to other people, “It’s embarrassing. I’m a healthcare professional. I’ve studied science my entire life.” I didn’t know what endometriosis meant. I thought it just meant bad periods, painful bleeding, painful sex. It was an excuse to me. Unfortunately, that’s what many people think and that’s the kind of the stigma you had mentioned. It’s a woman’s disease and women don’t normally talk about their reproductive systems. People don’t usually want to hear about women’s reproductive systems, and that’s unfortunate, because if we can tie this back to the beginning and talk about the prevalence being the same as diabetes. Diabetes isn’t always pretty either, and it affects every organ system in the body — just like endometriosis can affect almost every organ system in the body. Everyone’s symptoms might present a little bit differently, but they can involve major organ systems.
Carol Harnett [0:28:18.58]: I appreciate you sharing all that, particularly your comments about your mental health, because when I looked at this 2018 research study, they looked at lists of symptoms. The more symptoms you have, the more likely you are to be out of work for a period of time. The number two symptom (pain being number one) was mental health, because people were feeling unaddressed and confused.
I am so grateful you’re talking about mental health because, by coincidence, we are live recording this on May 1st, which is the beginning of Mental Health Awareness Month, in addition to Disability Insurance Awareness Month, and I’ve committed to talking a lot about mental health.
We have 60 seconds left to our time together, so I’m going to ask for a 30 second headline. Looking back on what you know now, what’s the number one piece of advice you would give to people?
Tawnia’s Best Advice | Educate Yourself
Tawnia Jacobson [0:29.15.14]: Educate yourself. Don’t trust that the doctors know exactly what they’re talking about. I don’t say that negatively, because I work with physicians every single day, but they’re not all experts in what you’re experiencing. Be your own advocate; do your own research, and find the specialist in the area that you need.
Carol Harnett [0:29:48.41]: Thank you so much, Tawnia, for being our guest. In my opinion, this is the best show we’ve ever done.
For everyone who has been listening, we hope this show has helped you.
I want to say thank you to all of our listeners. Have a great day, and there’ll be a transcript that accompanies this show so it is easier for you to get all of the information that we referenced. We will make sure there’s links for all of it.
Thank you again, Tawnia.
Tawnia Jacobson [0:30.11.97]: Thank you for having me – such a great topic.