It’s not right

Let me tell you about my friend, Nya. She lives in Nairobi, Kenya. I live in Massachusetts, so we haven’t actually seen each other, but she is my friend. We met in an endometriosis support group on Facebook called Nancy’s Nook. Facebook can drive you crazy sometimes, particularly around election season, but it can also provide you with some amazing connections. And sometimes, those connections can save your life.

Nya has spent the last few decades living in pain. From puberty onward, she’s had a multitude of gynecological, gastrointestinal, urological and pain issues. Years of visiting doctors to find answers left her with no answers at all. She was told that it wasn’t possible to be in that much pain, and wasn’t believed. Can you imagine how damaging it is to your soul to be told you are crazy for feeling the way you do? As her quality of life decreased, she began researching on her own. And this is what led her to Nancy’s Nook, a Facebook group run by a nurse (and a passionate endometriosis advocate) filled with files and research…basically an online encyclopedia for up to date endometriosis information. It was here that she spent two years learning that the standard treatment for endometriosis (hormone therapy, ablation, hysterectomy) doesn’t work. Just ask the generations of women who have been treated that way…most of whom have had over a dozen surgeries, after the endometriosis repeatedly “grows back.” She learned about the more recent data which proves that correct treatment consists of wide excision surgery…basically, removing every last speck of endometriosis. Finally, after 25 years, she had her answer.

Unfortunately, there were no doctors in Kenya who knew about this. Turns out, there were no doctors in her entire continent who knew about this. She had to advocate for herself, and travel to Romania in order to find an excision specialist. This past September, she finally had proper excision surgery for deep infiltrating endometriosis. It was removed from her pelvis, ureters, uterosacral ligaments, pelvic cul-de-sac and bowels. They removed bilateral endometriomas, which are large ovarian cysts filled with endometriosis tissue. She had a “frozen” pelvis, along with “kissing” ovaries from all the adhesions in her body, which were surgically corrected.

After surgery, she felt validated. The pain was not “in her head” as she had been told for over two decades. Can you imagine how difficult her life must have been, both physically and emotionally? Imagine no one believing you, or being told there’s nothing wrong with you, as you have days where you physically can not get out of bed? It’s so easy to think of her as one of many who live in areas where they don’t have the most up to date health care systems and medical advancements like we do in the United States. We Americans get to read this essay from a point of privilege, as we are lucky enough to live in a country that has the best medical care in the world. Or do we?

Remember, I met Nya in that support group. Why would I need to be in that type of group? I mean, I live in Massachusetts, and we are famous for having the top doctors and hospitals in the entire world, right? Yet, I was in that group. And even though I live here, surrounded by undoubtedly the best medical care, I have lived the same life as Nya. I too have suffered decades with pain and ailments no one believed. I started out with horrifically heavy and painful periods and incredible low back pain which kept me home from school at least one day each month. I had a host of gastrointestinal symptoms, fatigue and shortness of breath. As the years passed, my symptoms worsened, and I sought out specialist after specialist. Starting in my early twenties, I saw three GI doctors to seek relief from the chronic constipation, bloating, nausea and cramping, who performed colonoscopies and endoscopies with no findings. They diagnosed me with IBS and sent me on my way. I saw two pulmonologists for my persistent shortness of breath and had pulmonary function tests, which revealed nothing, and I was sent on my way. I saw a neurologist who performed muscle testing to determine why I was having searing pain with tingling down my legs. He found nothing and sent me on my way. I saw an electrophysiologist for my heart arrhythmia who performed a double ablation, which didn’t work, and he sent me on my way. I saw a physiatrist for my chronic back pain, who did trigger point injections, which didn’t work, and he sent me on my way. I became my chiropractors best patient, money-wise. I saw two rheumatologists who told me there was nothing wrong with me, and one of them suggested an anti-depressant, asking if maybe childhood trauma was causing me to think I had all these ailments. I had a great nurse practitioner, who sent me to most of these specialists, but once all the testing came back negative, she too suggested an antidepressant. That’s when I stopped complaining.

Like Nya, I began researching on my own, as my symptoms were getting worse. Thank God someone invented the internet during all of this! One day, around ten years ago, I plugged in “painful bowel movements during menstruation” and bingo- “endometriosis” popped up everywhere! I was ecstatic to finally have an answer. I went straight to my gynecologist, the same one I reported painful sex to, years earlier, who told me there was nothing abnormal and sent me on my way. I showed him my search results and he casually said, “yes, you may very well have endo, but it can only be diagnosed by surgery, and then the treatment is just birth control pills. So, let’s just put you on them.” I was grateful the answer was so easy! And yes, the pills made the pain so much better…for a few years. All my symptoms then worsened, and I returned to him. He said it was time for a hysterectomy. I trusted him that this was the answer. Prior to the surgery, I asked him to please look at my bowels, particularly on the left side, and see if there was endometriosis on them. I knew something was wrong, and I knew exactly where it was. I could feel it. A month later, at my post op visit, I eagerly asked what he saw. He just stared at me blankly. He forgot to look. He checked the operative record and said, “You have mild endometriosis on the pelvic cul-de-sac,” and sent me on my way. That was five years ago.

Fast forward to this year, when my symptoms became debilitating. I began cyclically bleeding rectally and knew it had become serious. My bloating and abdominal pain was worse than ever. I legitimately looked six months pregnant two weeks each month. I referred myself to an endometriosis “specialist” at the Brigham and Women’s Hospital in Boston…one of the best hospitals in the country. He ordered a colonoscopy and it revealed a partially obstructing endometriosis mass in my colon. I learned it’s rare for the disease to progress this far into the colon, so I became scared. Terrified, actually. It’s at this point that I stumbled across Nancy’s Nook on Facebook, along with a few other groups. I learned about the current treatments and read the horror stories of countless numbers of women who have had dozens of failed surgeries and decreased quality of life on hormone therapy. And when I returned to this “specialist” in Boston, he told me he’s putting me on hormone therapy, having a colo-rectal surgeon remove the tumor and that he would then remove the endo from wherever else he saw it, yet would leave it on the outside of my bowel, because it’s too dangerous to remove it from there and “it’s just going to grow back, anyway.” He explained that endometriosis is caused by retrograde menstrual flow, which is an antique theory. I left there crying…hopeless.

I returned to Nancy’s Nook and found out there are three, maybe four excision specialists in Massachusetts. Only four? Are you kidding me? With the medical reputation this state has? That’s not right. Anyway, to make a long story, well…long, I found Dr. Malcolm Mackenzie, who performed excision surgery on me this past September, a day after Nya had hers in Romania. He removed endometriosis from my bilateral pelvic brims, bilateral pelvic sidewalls, bilateral abdominal sidewalls, anterior abdominal wall, bladder, ureters, diaphragm, liver, the scar from my previous hysterectomy, pelvic cul-de-sac and Fallopian tubes. In addition to removing the endometriosis tumor found on my colonoscopy, he removed a second one which wasn’t noted prior. He also noted thousands of black “tar-like” areas in my fat tissue, which represented a previously ruptured endometrioma. Surgery took six hours and six weeks later, I am still recovering…yet grateful. My leg pain is gone, and I haven’t felt the arrhythmia since. I do believe this man not only saved my life, but saved my sanity. He believed me.

Tell me, how is it possible that a woman in Kenya and a woman in Massachusetts share the same story of a lifetime of misdiagnosis and medical mistreatment? How is it that we both suffered almost a lifetime of debilitating physical symptoms and were repeatedly not believed and sent on our way? How is it that only a handful of doctors across the world care enough to try and figure out why the traditional endometriosis treatments don’t work? Why are gynecologists not required to have specialized credentials for performing advanced endometriosis surgery…or even stage one surgery? That’s not right. Why aren’t there different medical codes for advanced endometriosis? As it is now, a surgeon gets reimbursed the same for an outpatient surgery as he or she would for an eight hour surgery. Of course so few of them want to spend their time learning to perform this surgery correctly! That’s not right. And how is it that no one talks about this? Every single person I tell this story to has the same response, “I had no idea this is what endometriosis is.” Even I didn’t know that this is what endometriosis is, and I’m a nurse. That’s not right. This affects millions of women, and no one is talking about it. That’s not right. My gynecologist, who let this grow through my colon for ten years, had no idea that this is what endometriosis is. That’s not right. As Dr. Mackenzie says, it’s a social injustice. He’s spot on. If this disease was affecting men this way, if it caused debilitating pain, affected their sex life and had anything to do with their reproductive system, you can be damn well sure there would be a cure by now. But, it doesn’t affect men. And no one is talking about it. I did not learn any of this while I was in nursing school. And Dr. Mackenzie and my original gynecologist and the “specialist” at Brigham and Women’s did not learn any of this while in medical school. It’s a silent epidemic that no one is talking about, and that’s not right. If left untreated, the endometriosis on my ureter could have cut off my kidney. I wonder how many women have died from kidney disease when it was really just untreated endometriosis? If left untreated, it would have obliterated my bowels. Endometriosis is one of the leading causes of infertility. Why is no one talking about this???

Well, I’m talking about this. And Nya’s talking about this. And so are my other endo warriors. We’re going to make it right. And we’re just getting started…

This post was written in response to Linda G. Hill’s Stream of Consciousness Saturday

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22 thoughts on “It’s not right”

  1. Wow! What a journey you’ve both had to go through. Isn’t the internet incredible? When my son was about six weeks old and miserable, it took several more weeks to diagnose and treat him for reflux because he didn’t present with classic symptoms. It was because of reading an online bulletin board that I read other mother’s stories, suspected reflux, and brought it up to our son’s pediatrician. With a change of formula (the kid did better off dairy, but still fussed) and given reflux meds, within 48 hours I had a new baby who actually slept and smiled.

    As advanced and specialized as our medical system is, I wholeheartedly agree that if endometriosis were something that affected men, we’d be much further ahead in diagnosing and treatment.

  2. It’s truly offensive that you had to suffer for so long. Keep on being the voice for those who can’t or don’t know to be their own voice. You can change things.

    1. Thank you, Cathy. It has been a long road, and I am nowhere near the end of it. Hopefully the medical establishment will start to listen to the patient and learn how to perform self-reflection.

  3. Incredible story…unbelievable in this day and age women are being treated like they are second class citizens by the medical profession.

  4. Jami, this is a wonderful article!! What you have been through should open so many eyes in the medical community. I know you will be an advocate for many many women and I pray your journey is heard throughout the entire medical world!! That may sound over reaching by saying the whole medical world but it is truly a travesty that this is happening all over the world today and educating doctors is the only solution! You go girl!

    1. Thank you, Paula! I appreciate your prayers and support! Such a crazy and difficult journey, but in a way, I’m glad I’m on it. I think I can help contribute to the solution…xo

  5. Thank you Jami for posting this. I’ve been dealing with symptoms for years. It started with a few symptoms about 20 yrs ago and almost 2 years ago my family Dr. suspected Endometriosis because I’m getting more symptoms, the ones I’ve been carrying for years are now constant and getting worse. I’m single, 33 and want children. The gynaecologist I was referred to wrote me off without hearing my history or all my symptoms and even before doing the pelvic exam. My family doctor believes I have it and is working with me to help me get to the right endo specialist. Although I’m in Canada, your story gives me hope that eventually, the stars will align and I’ll get to the right doctor to help me. I’m hoping it’s ok to share your post to help bring awareness to Endometriosis and the symptoms that are being misdiagnosed with other conditions.

    1. Please share away…we need to keep this dialogue going. Have you joined the Facebook group “Nancy’s Nook”? There is a file titled international surgeons and these are doctors recommended by the thousands of women who report back to Nancy with successful stories. I know that there must be some of them in Canada. Find one ASAP and get on the path to healing💕

  6. Oh, Jami, you have been through SO much all these years and we are so grateful that you have found a doctor who cares so much and is finally helping you! Now you are an advocate for so many others worldwide and that is truly a gift!!! We pray for your complete healing and return to a comfortable life!! God bless you as you help others!!

  7. Jami
    Your article is spot on. The average patient waits 10-12 years and sees as many doctors and specialists before getting the appropriate diagnosis, suffering years of pain needlessly, undergoing emotional, financial, and personal losses due this devastating disease. Even if doctors followed recommendations, they should be able to make the diagnosis within 2 years. Two years!!! You try them on birth control for 6 months and then the next step should be surgery. But not just any surgery. Excision is by far the most effective form of treatment for all endo BUT in particular for deeply infiltrative endo. The excision specialist should have a multi-disciplinary team to deal with bowel resections, bladder resections, ureteral re-implantations, and thoracic endo. IF they do not or cannot do that, then you may need to go elsewhere. The line given by some doctors such as “that is too risky” is ridiculous. They don’t know the risks because they don’t know how the surgery is done, and what the risks are. They usually know nothing about invasive bowel or bladder endo let alone thoracic endo. These issues will not be alleviated by medical treatment since as soon as you stop them, your disease will recur within months and progress from there. Then this antiquated idea of retro-grade menstruation is ridiculous since if they had read any legitimate recent data, they would know that there is just not enough evidence today to support that concept. Thank you for bringing this situation to the forefront, carefully describing the struggle that so many experience. And to have too few doctors, that can adequately treat it and little incentive to do the right thing except for the belief that you have to do the right thing for the patient, spending as long as needed to learn how to treat it correctly, and spending the hours needed to refine those skills, and thousands of hours of surgery to perfect those skills. Throwing ineffective, and risk associated medications are not an effective long-term option, and the only chance of having a normal quality of life is through excision surgery. Patients often do need other additional treatments, such as pelvic floor physical therapy, but surgery is the mainstay for endometriosis.

    1. Dr. Sinervo, thank you so much for taking the time to read this essay, and for leaving such a detailed response. I plan to continue shouting this from the roof tops, as I really do consider this medical neglect to be criminal.

      Thank you for being one of the few doctors who believe in doing the right thing for the patient.

  8. Hi Jami,
    I found your post while searching for anything about Dr. Mackenzie as I just saw him and I’m scheduling an excision surgery with him ASAP. My story is very much like yours and after 30 years (!!!) of doctors brushing me off I’m not sure I’ve processed the affirmation and hope Dr. Mackenzie gave me. May I ask how you’re doing now? I so hope you’re still feeling better. Thank you so much for your post.
    Emily

    1. Hi Emily,
      Well, endo is tricky, even with the best doctors. I’ve had two excision surgeries with him. We believe I’m in the small and rare group of women with true recurrent endo. Both times, my symptoms resolved, but came back 6 months later. I believe it’s linked somehow to my mast cell activation syndrome. I’m on low dose hormone replacement now, and that makes it manageable. I definitely feel better than I did before the surgeries. I’m grateful I had them, and for the majority of his patients, it’s curative. I often wonder if it would be more successful if I’d had the surgery decades earlier. He truly is a breath of fresh air. Receiving medical validation after a lifetime of being dismissed is indescribable. Glad you were able to connect with him. He’s one of a kind💕

  9. Thank you for responding. I’m glad to hear you feel better but wish you were able to get closer to “cured.” And I wish both of us were treated decades before we were. Strength and all best wishes to you. You are clearly a remarkable person. ♥️

      1. Will do! Thanks 😊
        You might not remember me though…he’s booking surgeries out 18 months right now!! ♥️

        1. I will because it will be right here! And put your name on the cancellation list. My first one was booked for February and ended up getting moved to the September prior. People cancel all the time

          1. Well, my surgery was scheduled for 9/5/23 (omg!) but Dr MacKenzie called me on Friday and offered me surgery next/this coming Friday! So…I guess it’s happening. Fingers crossed it goes well. Suddenly I’m very very nervous!!

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