Beginning, Middle, Endo: Vanessa’s 15-year Journey to Endometriosis Diagnosis
In this episode of the Breath and Birth Co. Podcast, Vanessa (founder of Breath & Birth Co. and endo warrior) narrates her extensive 15-year journey to an endometriosis diagnosis. She shares critical information about endometriosis, including its symptoms, misdiagnosis issues, and the importance of excision surgery. Vanessa discusses her personal experiences with symptoms, diet and lifestyle changes, and the eventual surgical process that led to her positive pregnancy outcome. The episode aims to spread awareness, offer insights for those on similar journeys, and provides encouragement to seek proper diagnosis and care. Join Vanessa as she inspires and informs listeners about navigating the challenges of endometriosis through infertility.
“If your doctor mentions ablation for your endo treatment, that’s a red flag.”
- Vanessa Bauman
🔑 10 Key Facts About Endometriosis:
Endometriosis occurs when tissue similar to the uterine lining grows outside the uterus.
It affects an estimated 200 million people worldwide.
The average time to receive a diagnosis is 7-10 years.
Symptoms can include severe pelvic pain, painful periods, fatigue, infertility, painful bowel movements, and more.
Endometriosis does NOT always show up on ultrasounds or imaging tests.
Surgery, specifically laparoscopic excision, is the gold standard for diagnosis and treatment.
Endo can affect areas beyond the reproductive system, including the bowels, bladder, diaphragm, and even the lungs.
It is NOT “just bad cramps”—endo can cause debilitating, chronic pain and significantly impact daily life.
There is currently no cure, but treatment options like surgery, pain management, and lifestyle changes can help.
Endometriosis is underfunded and under-researched, leaving many patients without proper care or support.
🚩 Ablation vs. Excision 🚩
Ablation is often offered as a treatment for endometriosis, but here’s the truth: it’s not the gold standard of care. Ablation burns the surface of endo lesions, but it doesn’t remove the disease completely. This can lead to recurring pain and symptoms, leaving you feeling stuck in the same cycle.
The most effective treatment is excision surgery, where the surgeon removes endometriosis lesions from the root—think of it like weeding a garden properly. Excision is proven to provide longer-lasting relief, lower recurrence rates, and better overall outcomes for endo warriors.
If you’re navigating your endometriosis journey, remember:
👉 You deserve a doctor who listens, believes you, and offers evidence-based care.
👉 Advocate for yourself. Ask questions. Seek second opinions if needed.
Understanding the Complex Nature of Endometriosis
Endometriosis is not just an issue of painful periods. It can lead to chronic pain, gastrointestinal issues, and affect various organs. In the podcast, I outline common misconceptions and facts about endometriosis, such as:
It's More Than Menstrual Pain: Many suffer debilitating pain beyond menstruation, affecting daily life activities.
Diagnosis is a Long Road: It often takes seven to ten years for an accurate diagnosis, with many being misdiagnosed along the way.
Surgery as the Gold Standard: While hormonal treatments can manage symptoms, excision surgery is the most effective treatment.
Not Just a Reproductive Disease: Endometriosis can potentially affect other organs like the lungs or intestines.
My Path to Diagnosis and Treatment
My path started with the realization that my painful, heavy periods were not normal—a symptom that ran in my family yet was dismissed for years. Under-diagnoses like IBS added more hurdles, as did the struggle with healthcare professionals who did not fully understand endometriosis. It wasn't until I found a fellowship-trained specialist that I received the care I needed. The excision surgery in December 2018 was a life-changing moment, a culmination of years of frustration and silent suffering finally validated. This surgery was crucial not only for my health but for my fertility journey.
Moving Forward with Confidence
Ultimately, this podcast episode is about finding empowerment through understanding and action. Whether you're navigating an endometriosis diagnosis or supporting someone else, know that you're not alone. I hope that sharing my journey brings you comfort, inspiration, and practical insights. If you're dealing with symptoms or seeking diagnosis, I encourage you to reach out to experts and communities who understand.
The Power of Sharing Your Story
One of the most profound revelations on my journey was realizing the impact of sharing my story. By speaking about my experiences with symptoms and diagnosis, I discovered the powerful effect it had not just on my healing but on others as well. Friends, family, even strangers shared how my openness encouraged them to seek their diagnosis or advocate for loved ones. This episode dives into those pivotal moments and emphasizes the importance of community and support.
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📲 Share this episode with a friend who needs to hear this so they don’t feel so alone.
⭐️ And if you have a moment, leave a quick rating or review on Apple Podcasts —it helps more families find their way to empowered birth.
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00:00 Welcome to the Breath and Birth Co. Podcast
00:47 Vanessa's Journey to an Endometriosis Diagnosis
01:47 10 Lesser-Known Facts About Endometriosis
07:05 Vanessa's Personal Endometriosis Journey
16:19 The Road to Surgery and Recovery
29:27 Life After Surgery and Pregnancy Journey
45:48 Conclusion and Support
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Vanessa: Welcome to the Breath and Birth Co. podcast. I'm Vanessa, a hospital- based, DONA- International certified birth doula, and passionate childbirth educator. I love to merge the power of your intuition with the precision of modern medicine to help you navigate pregnancy and birth your way. Each week we kick off with Monday meditations to bring calm and connection to your pregnancy.
Then we build your confidence through insights, birth stories, and care provider perspectives during thoughtful Thursdays. Ready to feel supported, informed, and empowered? Hit subscribe to the Breath and Birth Co. podcast today and let's embark on this transformational journey together. As a reminder, any information shared here is not medical advice.
For more details, visit breathandbirthco. com slash disclaimer.
I'm calling this episode Beginning Middle Endo, Vanessa's 15 year journey to an endometriosis diagnosis. , because really I feel like this is a huge part of my story, and every story has a beginning, middle, and an end. And this was, um, although technically probably somewhere in the middle of my story, it really felt like the beginning of my journey.
The Breath of Birth Coast story.
I thought it would be a disservice to you all not to include, some interesting lesser known facts about endometriosis. Uh, it's something that I'm very passionate about spreading, awareness and knowledge about so that others can seek diagnosis and finally have an answer to all of their symptoms that they've experienced.
And I've even had in, um, speaking out, I've even had spouses or significant others, um, tell me that because of me sharing my story, they were able to help their spouse or significant other with their diagnosis, seeking help and encouraging them and affirming them and all of that. So, um, without further ado, I'd just like to share 10, factoids that you may or may not know about endometriosis so that you can, either know for yourself and your own experience, or if you hear a friend or family member share their lived experience with you and it's ringing any kind of bells or checking any of these boxes that you can share that information with them so that they can achieve their diagnosis as well.
So, first, endometriosis is not just a bad period. It can cause debilitating pain unrelated to menstruation, um, including during ovulation, bowel movements, or even daily activities. And I experienced that myself as well. Um, eventually when I was, in the chronic pain phase of my endo journey, I was experiencing pain, um, during and around ovulation.
Again, I had consistent GI issues, all along the way. So yeah, it's not just a bad period.
Number two is that it takes an average of seven to ten years to get diagnosed., Initially, many individuals, including myself, are either misdiagnosed or under diagnosed, so they may be diagnosed with, um, pieces of the puzzle that tend to be comorbid with endometriosis, but they don't get that ultimate endo diagnosis, that can unlock a whole plethora of other, care that is needed.
And people are often, dismissed prior to receiving a diagnosis. So, like my journey, um, where I saw multiple doctors. Went through multiple tests and was kind of like, oh, okay, well, we can't really give you a name for that or we, this test was negative, so we're just gonna classify it as IBS, which is like this general diagnosis that we can give anybody that has GI issues, but we can't put a pin in it.
Okay, number three, it's more than just a reproductive disease. Endometriosis can affect multiple organs including the bladder, intestines, and even the lungs in rare cases, which is called thoracic endometriosis.
Number four, surgery is the gold standard for the diagnosis. Like I mentioned that endo excision, Laparoscopic surgery is the ideal gold standard, , and while ultrasounds and MRIs may help, the laparoscopic surgery is currently the only way to confirm diagnosis through biopsy and testing.
Number five, hormonal treatments don't cure it. Birth control, GnRH agnostics, and other hormonal therapies may manage the symptoms but do not alleviate the root cause or the fact that the endometriosis is there. And I experienced that as well throughout my lifetime. I had been on several different types of birth control in an attempt to, one, regulate my cycle, two, eliminate my symptoms and pain, and three, Of all of the different types I was on, nothing truly helped.
Um, so I, I did experience that fact that, hormonal treatments don't cure it. ,
number six, excision surgery is the most effective treatment. So, unlike ablation, which burns the surface lesions, excision removes the disease at its root, offering longer term relief.
Number seven, it's not always visible. So, endometriosis lesions can appear in a variety of colors and forms. It can be clear, white, black, or red, and that makes it harder to detect without a skilled surgeon. So, your typical OB GYN is not going to be educated as to in all of the different types of endo and how to find that, which means if they're going in there, even if for ablation, they might not even be ablating everything, um, because they might not catch it all.
And eight, it's linked to an immune system dysfunction., so while the exact cause is still unknown, unfortunately, endometriosis is associated with inflammation and immune system irregularity.
9. Pregnancy is not a cure. While some experience temporary symptom relief during pregnancy, endometriosis can return postpartum and may even worsen for others.
Generations ago, women with period pain, heavy periods, that was The treatment plan for them. Literally, their OB or GIN would just tell them, get pregnant, and basically, if you don't have your period for that time, there go your symptoms. That solves that. Um, which, obviously, we know that that's not a cure.
So, anyway, and number 10, endometriosis isn't rare. And again, this is why I'm so passionate about talking about it, to bring awareness to it, that it affects 1 in 10 people assigned female at birth, yet it's often misunderstood, Underdiagnosed and underfunded in research as well. ,
there you have it ten quick tips I'll include these all in the show notes as well for you And if you check any of those boxes or anything has been a red flag in what you've heard I do encourage you to advocate for yourself or a friend or family member who this brought to mind for you and
Okay, let's get into my own journey to and through pregnancy. As some of you know, I was finally diagnosed with severe endometriosis in December of 2018 through a laparoscopic excision surgery.
Uh, first I'll bring you back to the beginning of my symptoms and the tests I've had along the way. And I'll talk you through each of those, things. So starting with my history, , I had symptoms of painful, heavy, long, irregular periods. And that ran in my family, and so I was conditioned to feel that that was normal from the very beginning.
It was normal to change out an overnight pad and super tampon every few hours to avoid bleeding through my pants.
And I also regularly stayed home from school and work over the years while on my period due to pain, exhaustion, and quite honestly puking too. At the age of 19, so that was the summer of 2004, Uh, I had, increased stomach pains and GI issues and had gone to several different doctors.
Um, at one point Crohn's was suspected, but they did lots of, uh, blood work scans. I had an upper endoscopy and we did a lactoceliac biopsy and everything kept coming back normal. And so after all of that, um, basically the doctor, the GI specialist defaulted to IBS. , And I was given medications for the inflammation and the pain and sent back to college.
But I really wanted to get off of the meds, and so I did a kind of self driven elimination diet to discover what my food triggers were. , it was definitely tied back to, um, certain foods. And initially, I had discovered red meat was the worst, and dairy was not great, but still, I loved cheese and ice cream too much, so I wasn't willing to cut out dairy quite yet.
But I did do red meat, And, um, ultimately, I also cut out chicken and became full vegetarian fish. I never really liked, so that was not a big deal to me. Um, and so, yeah, so I was vegetarian starting. In 2004 and numerous times since then I have had flare ups.
Um, since I've moved several times throughout my life, I was getting new doctors in each location and not really. You know, connecting the dots between them, and every time I would go, the test just kept coming back normal. Um, so, eventually, in 2014, I pushed for a colonoscopy, and that also came back with nothing but a few hemorrhoids.
And so, at that point, I had become very frustrated with the medical system, and didn't realize it at the time, but I had been gaslighted all along. And so the thought of going to more doctor's appointments, going through more tests, having to endure more procedures to get answers that weren't really very telling to what I was experiencing in my own body, it it became more of a trigger for me.
So I went through a long period where I just didn't I just did not see doctors at all, and I just dealt with the pain, and again, I was conditioned to believe that this was my normal, and so I just lived my life as if that was normal every month cyclically. Um, so then, 2015 to 2017, I started coming to terms with the fact that my normal was in fact not normal.
, it may have been common, but it was not normal. , I was getting, I got to the point where I was getting periods twice a month, I was having chronic joint pain and I also had regular GI issues and stomach bloating, um, and general pain in, around my stomach and rib area. As my husband and I just started discussing family planning, I started to track my period to see if there was any sort of underlying pattern that we could plan to.
Um, as I mentioned, one of my major symptoms was irregular heavy periods. So sometimes that meant several months without a period, sometimes that meant several periods within a month. In doing so, I had discovered that my GI patterns did sometimes align with my irregular cycle. And that was kind of the first time I paired those symptoms together as being connected.
And around the same time, I had been introduced to the word endometriosis and, um, what it essentially meant. I had met somebody that had been diagnosed with it and talked openly about it and hearing her story made me realize, you know, that's checking all of my boxes of what my experience has looked like
over a decade at that point. , and so I started to do research on my own. I joined Nancy's nook on Facebook and I'll link that in the show notes here. And that group is not. a support group. I'll give you that for warning. Nancy's Nook on Facebook is not a support group, but it is a treasure trove of information, and she's really using it to connect people to providers and allowing people to, , ask questions and dig into the data.
She provides a lot of, , medical research and, , articles, medical articles that have been published so that you can do your own research. And It was with him there that I learned that basically all of my symptoms. , I read others stories and other questions that were similar to my own questions and just really felt, um, like this was what I had.
Within that group, I also learned that there was a fellowship trained endometriosis specialist within, , the Columbus, Ohio area where I reside.
think it's also important to note here that After doing deep dives and doing my own research and talking a little bit more openly about it and asking the questions among the women in my own family, I did discover some of this was new information and some of it I just had to be reminded of, but I did have a family history of atypical, um, reproductive symptoms, I'll say, All before I was going through this, my own discovery about endometriosis and what my symptoms might be.
Um, so again, you can see that I have the familial history there. And, Also, the fact that it just wasn't talked about a lot. There was a lot of stigma around it. And I, um, yeah, I just wasn't aware. And I think that if it had been talked about a little bit more, I probably would have been more on the up and up earlier on in my life.
And maybe my endo would not have progressed the way that it did before I sought help. Um, and then I could put a name to it and really learn how to advocate for myself better earlier on in life. So that is a lot of my mission in life. Talking about this throughout my fertility journey, I was very vocal about it on social media channels, and a lot of people reached out to me and just thanked me for that, um, for being able to be open about it and share.
, it was very relatable to some people. I've lost track of how many people have reached back out to me since then and told me that they achieved their own diagnosis. After listening to my story and learning how to advocate for themselves and learning, what the difference it makes when you see a, fellowship trained endometriosis specialist.
, so anyway, all of that to say, I. I eventually snapped out of this trance as the pieces continued to fit together into this endo puzzle, I'll call it. And eventually, in February of 2018, I had unexplained bruises all over my body. Deep, dark, large bruises in places that I don't remember, bumping or hitting or what have you.
And it was kind of a wake up call for me, that something is clearly going wrong in my body. I have some sort of deficiency. This is not normal. To experience this and so that's when I really found that endometriosis fellowship trained specialist Dr. Mini here in Columbus, and I scheduled a first consult with her in April Actually, April 11th 2018.
I remember that date.
It was a very pivotal date in my life. So I do remember that When that date finally did come, I went to the appointment. I was so scared and nervous. Um, like I said, I had avoided doctors for years at that point. I was used to being, um, not necessarily ignored, but not fully listened to, not always believed, um, just kind of brushed off.
And we went over my whole history. And ultimately, I felt validated, she told me confidently that I had a textbook history, that she really, truly believed that I did have endometriosis. And she literally held my hand and looked in my eyes when she was telling me this. And I'm pretty sure I broke down into tears at that moment every time I talk about it.
I Emotionally moved because it was truly the first time that I had felt heard and seen in a doctor's appointment And it's something that I wish that every person Could feel at every doctor's appointment that they go to so At that point, we had talked about different options. Um, she said that, that I could pursue the surgery now.
, at the time, there was no other way to officially diagnose endometriosis other than a laparoscopic biopsy surgery, at which point, if any endo was found, she would also go in and excise it all at the roots. So, we could start there. or knowing that we were going to try to conceive that we could start trying that process naturally to see if it worked first.
And then if I continued to have problems later on, you know, then we could explore surgery if needed. And so I decided that her verbally affirming me and validating the fact that she did truly believe that I had endo was enough for me to move forward. as if I did have it at that time and to change my lifestyle and diet with, certain recommendations, avoiding certain triggers that are very common for endo, warriors and see what that could do for me naturally.
And then we gave ourselves a timeline and said, okay, if I'm not pregnant, you know, in six to nine months, then we'll move forward with the surgery at that point. And so from there. I, oh, we had also done some initial blood work, , hormonal blood work and just your typical, you know, run up of, of blood work and discovered that I, had diminished ovarian reserve.
So that meant my AMH levels were very, very low for my age. , they were below, I think it was below one at that point. I'm looking through my notes now. Um, anyway, it was very, very low. I was considered, when I compared those, the hormonal levels that I, that my test gave me on a chart, It showed me as being like a premenopausal 50 year old woman, and I was 32 years old, so again, not normal, , and I also decided to change my diet and lifestyle, like I mentioned, so I went from vegetarian to full vegan, so I eliminated all dairy as well, gluten free, caffeine free. alcohol free, added sugar free, and mostly soy free. , soy is in pretty much any processed product, if you weren't aware, and it's very, very difficult to eliminate all of those other things along with soy, but I definitely try to stay away from . pure soy, like soybean products, tofu, edamame, things like that.
In my research, I had learned that that could be a potential trigger as well. So I eliminated all of those things and And for a short time period, started to try to add them back in to see if I was having any of the reactions and ultimately determined that it just was not worth me adding anything back in because my life was changed so drastically.
Um, my chronic pain was gone. My, my joint pain was gone. I had lost a lot of weight, not that I needed to, but I was just feeling healthier and more energetic, , all along the way. I had also at the same time started taking supplements. So I had, let me look at my list here. It was B Complex, B12, C, COQ10 ubiquitin.
D3, evening primrose oil, and L, carotene. And that was with the guidance of, my Chinese medicine doctor as well, which I'll get into in a little bit here. , I also cut back significantly on work travel. So I had been traveling very frequently, both domestically and internationally, for my full time job.
And oftentimes, To Asia for a week at a time so that, you know, 12 to 13 hour time difference. And coming back. And then going back, you know, it just, my body, it was wreaking havoc on my body. So I took a step back from travel at the time for work. I got back into yoga. I had gone through phases of my life where I've been a yogi and .
I just always remember that it brought me such calm, I enjoyed the movement, I enjoyed, , the peacefulness of it, how it helped my anxiety levels, and, just that movement and exercise that it gave my body. So I got back into yoga and then, I saw a traditional Chinese medicine doctor for acupuncture two times a week, , which ultimately I was surprised at how much it helped my anxiety and I don't know that I realized that until after I stopped going, really.
, but I will say that, I don't think that my progress would have been as speedy without that acupuncture. , I think that just kind of helped set things, um, realign and set my flow, um, You know, get rid of blockages, et cetera. I also in the kitchen and, beauty products and just household products, I eliminated most contact with BPA products and plastics in the kitchen and also eliminated toxins.
So BPA, parabens, harsh chemicals, fragrances, et cetera, in, cosmetics and cleaning products that we used in the house. And then I had also in this time, Red, taking charge of your fertility and started the basal body temping and cervical mucus tracking to, basically deeper dive into my cycles and tracking them.
, originally I was just using one of the apps, which makes a lot of assumptions. I learned through my research and for somebody that has a very irregular cycle and, not necessarily knowing when ovulation was occurring. I wanted to pinpoint those things on my own. So I went with the basal body temping and cervical mucus tracking, also known as,, FAM, fertility awareness method.
That brings me to July of 2018, , I had written in my notes, , I journaled in my notes on my phone throughout all of this, and so it was like a 12 week update since I started those changes in July of, the update was in July of 2018. And I said, I feel the best I've ever felt that I can, since I can remember my cycles had gone from 21 to 65 day spans and periods from 7 to 10 days of excruciating pain and very heavy flow to 27 to 29 day cycles with 3 to 4 days of very light flow with minimal to no symptoms.
Um, So again, that was within 12 weeks of me changing my diet and lifestyle and doing acupuncture one to two times a week. Oh, I also note here that I believe the diet to be the most impactful to my overall improvement, but truly believe the supplements were also necessary and that I would not have seen such drastic improvement so quickly without the acupuncture.
Then in November of 2018, So between July and November, again, just continuing the diet and lifestyle changes and also continually trying to conceive with negative test after negative test. So then we get to November of 2018, which was right around the time, that kind of cut off time we gave ourselves to, okay, if I'm not pregnant by then, let's start exploring surgery and other options.
So I had a follow up appointment, and we checked my AMH levels and some other hormones at that appointment, and I have here in my notes that from that update my AMH levels actually went up from 0. 5 to 1. 3. Okay, so they were 0. 5 at that first appointment, and and As a reference point, typically speaking, at least at the time, many fertility doctors will not even work with you, or don't suggest IVF treatments if you have an AMH under 1, just because of the success rates and what it can do for your body.
And typically the lower your AMH level, the more likely you are to get an AMH. It can mean the less eggs you have left and the best eggs go first. So the theory is that the eggs you have left at that point likely aren't high quality eggs. Um, so yeah, so the success rate and and the fact that you have so few eggs left potentially, and that any IVF treatments, are Increasing the egg output, you know that you want to release multiple eggs at the same time.
And so anyway All of that to say that originally I was at a 0. 5. This last test in November of 2018, , it was at 1. 3. So your AMH levels can be impacted by severe vitamin deficiencies, which appears to be my case. So they were still very, very low for my age, but they were improved. once I improved those vitamin deficiencies and had a, more nutritious diet.
I was also at that point diagnosed with hypothyroidism, which is very common in endo patients, and I had suspected based on my low basal body temperatures, , when you read your charts, you can I could tell, basically, that my baseline was much lower, and that can be a symptom of hypothyroidism. And so that is what helped me, , ultimately advocate for full thyroid panel tests, which, Dr. Binney was happy to do because she also agreed that it's very often comorbid with endo, and that that could be a huge block in my fertility journey as well, not having my thyroid levels in check. With the thyroid, you want your T4 number to be as close to 1 for optimal fertility is what I was told at the time and the After all of my diet and lifestyle changes, I was able to get that number down to four.
But I did need the help of a small dose of, I'm on levothyroxine still to this day. , and so I was on the lowest dose for that. And that helped me get within the range. So I was, um, it was very close to one at that point. Um, So anyway, again, I'm going through my notes here. So diet and lifestyle changes I had made were already helping my numbers, but I did need a little extra help.
Um, and then we also did a 21 day, , progesterone test and it's 21 days trying to estimate seven days after ovulation, assuming you ovulate on day 14. And that test at that time, um, did confirm that my, Um, my results were 18. 1, so anything over 8 confirms ovulation, and that was good validation to me that my charge and my tracking, were correct, and that I, I really, I was, you know, intuitive in knowing my body at that point, that I was actually ovulating that between the BBT and cervical mucus tracking, and I was also doing ovulation strips, along with the pregnancy test each month.
And all of that was correct, and I was not crazy. Um, so that was good news. And then, we also at that point, at that appointment, did end up scheduling the excision surgery for December. December 13th, 2018. And again, that date is also very special to me. It's ultimately the day that
literally changed my life. Um, I felt like Dr. Mini saved my life on that day. Um, and yeah, so I celebrate that day. I call it my excisionversary, and I celebrate it like a birthday to myself, um, every year. So anyway, so we scheduled that, appointment or the surgery itself. And I'd also like to take the time now to step back and differentiate the difference or explain the difference between excision surgery and an ablation.
So a lot of standard OBs and gynecologists are not fellowship trained in endometriosis, which is a very complicated, complex disease, and they might not even have been educated on it at all in school, and whatever they do know is just from reading articles or information since. And when you see a standard gynecologist or OB and you share your symptoms and you tell them you think you have endo and they say either one, okay, let's discuss an ablation or two, let's discuss a hysterectomy.
Those are major red flags that they don't know what they're talking about when it comes to endometriosis. So first of all, an ablation is basically burning the endo at the surface, which has very high recurrence rates. An excision, surgery is a laparoscopic robotic surgery where you're going in and you're actually cutting out the endometriosis from its roots so it will not grow back.
The recurrence rates with an excision surgery are very, very, very low and typically more so driven around, um, potentially missing certain pieces of endo around and then that endo that's left over continues to spread, whereas ablation. It will just continue growing back on itself and spreading differently and causing, scar tissue issues, etc.
And then also on a note about a hysterectomy, so a hysterectomy, removing of the uterus, will not cure or solve your endometriosis. Endometriosis by definition is endometrial tissues growing outside of the uterus and typically that means on other organs, in other places. So removing the uterus itself will not solve that problem.
If you have adenomyosis, it will. That is, you know, when those cells are on and outside of the uterus. But endometriosis, that is not a cure all. That will not eliminate your issues if you have endo growing other places, which most people do. Anyway, I just wanted to clear that up, too, that if you are also on your endometriosis journey, and that's why you're listening to this podcast right now, if your doctor at any point has mentioned ablation or told you that that is the procedure that they would recommend doing, major red flag, take a pause, go to Nancy's Nook, find a fellowship trained endometriosis specialist in your area.
I promise if it is within your means, it is worth the travel to find one. Um, take a break. And have an excision surgery from the beginning, as opposed to 10 ablation surgeries over your lifetime and causing other issues along the way. So, I was able to find, luckily, a fellowship trained specialist in Columbus, locally, for me, that was Fortunately covered by my health care insurance as well.
And like I said, we scheduled that surgery for December 13th, 2018. And leading into that surgery, I had to sign paperwork for what I was willing basically to give up in that surgery. So the thing with endometriosis is it cannot be detected on, through x ray or imaging or. any kind of scans or any hormonal tests or anything.
And you might be able to see if you have large cysts or if, something looks off in terms of like, for instance, I think one of the Early red flags was my uterus, was tilted, which could mean that it was fused to something else in an image, but it's not that they could actually read the endo on the image or on the ultrasound.
so leading into surgery, you don't have a game plan. Basically, you don't know how long it's going to take. You don't know what they're going to find. They could find nothing or they could find it all over your body and it could take eight hours to excise. Um, it could be, all over your intestines or your bowel and you could need a colostomy bag. I think that honestly was one of the most nerve wracking parts of this. I deep down was a little bit scared that they would find nothing after all of this, and that I would truly be, you know, diagnosed as crazy or what have you.
, but I, I truly, I knew that I knew she was going to find something. And so, my worry then became, how much, how is it going to impact what I'm going to wake up with or without? And having to make that decision of what I was willing for her to take while she was in there was very scary. Ultimately, I kind of talked myself off the ledge in that I could always go back for additional surgeries if I, if there was anything I felt like I need time to process, if I needed to get rid of it, to live a healthy lifestyle or, um, you know, to live without pain, to potentially conceive or to move on from the fact that I would not be able to conceive, um, you know, that I, I could have time to make those decisions and that ultimately going into this first surgery, I was willing for her to take, my appendix, typically if I don't respond on your appendix at all and they just take the whole thing because it's not worth spending the time to excise it out of that if you don't need it.
, and then I also agreed to, , one tube and one ovary, knowing that it was still very possible for, Me too conceived naturally.
So that is what I ultimately signed off for, for the first surgery. We did suspect, based on my GI symptoms, that I had, that I could have endo somewhere on my bowel. I was not ready to wake up with a colostomy bag. And she would have needed more time to prepare and coordinate with a GI surgical specialist as well.
So yeah, didn't want that during that surgery. If she came out of that surgery and told us, yeah, this is what you need, I was willing to go under a second surgery if that truly was what I needed. Um, but, but yeah, so that was, That was really scary, having to write down on a piece of paper and sign my name away, um, going into that surgery and not knowing what they would find and what I would wake up with or without.
On the day of surgery, my, husband Brian and my grandma, who we call lovingly Graham,, Brian and Graham came to the surgery with me, they were at the hospital and they waited in the waiting room together. And eventually Dr. Minnie came out post surgery and talked to them. And, held Brian's hand, like literally cried with them, sharing the news that she had found it.
It was all over, um, that I was right all along. I was living in extreme pain. ,
so she gave them the validation as well. Well, I was still, waking up from anesthesia, and eventually when I did wake up, apparently, one of the first things I said to my husband
was something to the effect of, um, did she get it all, not was it there. Not, where was it, but just, did she get rid of all of it? Because I knew, again, going into it, I just knew it was there and I trusted her to do what she needed to do. It was just a matter of, is there some leftover that I need to, you know, take time to process about?
And fortunately, my husband was able to validate that, yes. She was able to get it all during that surgery, that it was all over. And then I had two different types of endo. So, the, complicated nature of endo is I think that there, there's four total different types, and how it shows up in the body and how it literally looks for somebody, during this robotic surgery trying to find it all.
There is, , A sticky, thin, almost white or clear type of endo that's more, I guess it looks more like a muscle, I think is what I've heard it be related to. Um, and then there is like dark black lesions and I had both of those and, the sticky stuff had actually fused a lot of my organs together and they were in all different places and she helped excise and remove that all from the roots, got everything back to where it was supposed to be.
While she was in there, they flushed my tubes and were able to clear those out. She carefully, untangled my, my tubes and my ovaries and, , then suspended my ovaries for healing. So there was, she did have to, surgically remove some stuff. And then based on all of the other things that were removed, it was literally found from my ribs to my rectum.
And so, um, just to help with scar tissue and everything, part of the procedure was that she suspended my ovaries, which was quite interesting. There were literally, strings coming out of my body with little knots on the ends of them. And then, a certain duration after the surgery, my husband and I just, Pulled on the string and we cut it with scissors and pulled the string out and my ovaries floated back into place It was really really crazy And I actually have video of us doing it too so Anyways, yeah, so Ta da!
I had my official, diagnosis from the surgery itself. officially, officially, she, she sent the, pathology and, the biopsy samples to the lab to be tested and confirmed that they were endometriosis. She also did, cancer screening or whatever to all they were in there. And those tests from the biopsies, , to confirm that it was endometrial tissue, and that she did find it everywhere.
Um, so that a few days after that, once I got the actual lab results back, that was like my official, official, official diagnosis. But , that surgery day, was The day that changed my life and, um, coming out of the anesthesia, I've never been good about that. I was discolored. I was nauseous. I was puking.
It was just not pretty., and so between that and the fact that it was more extensive, they kept me overnight in the hospital. I also had the pain pump, the OnCue pain pump. So that was another tube coming out of my body besides the strings., and that is basically like a gravity, um, like it's a liquid pain medication that goes through a tube by, gravity, pump, whatever.
Um, you carry it around in a little fanny pack. And then eventually, after a few days,, it's like , basically, a bolus, and, it shrank down to nothing, and then you take out the tube and put the band aid on, and you're good to go. But that, distributed the medication directly to, um, the most, intense parts, of where it needed to, to help with that pain outside of the hospital in those first few days at home.
And then, after that, I was given Percocet, which I had really weird side effects for, so I stopped taking that pretty much immediately and just did, Advil, Tylenol, what have you, like over the counter pain meds. I did have to really take it slow. , recovery, You know, it was similar in retrospect, to postpartum, where, at least for me, because it was such a major abdominal surgery, where I really just had to hang out in bed for a long time.
And then I would try to get up and do certain things around the house. , I was off work full time on short term, um, disability leave during this time. when I eventually went back to the office, it was only part time, um, because I was just so physically exhausted from healing, um, and I really didn't want to overdo it.
Um, yeah, there were days where I was like, okay, I feel energetic, so I'm going to get up and I'm going to vacuum and do the dishes, and then I, like an hour later, I would be back in bed for the next four hours. , See, I really had to balance, , as a, a type A multitasking workaholic, had to balance the fact that my body needed to heal, that I could not relate my productivity to my value as a person, my worthiness, that I really had to just, truly deeply rest my body and let it heal.
Um, Ultimately, I was able to do that, and, we had our first follow up appointment, I think it was six weeks after surgery, and that, I'm trying to remember now if I had an appointment where she went over, it felt very soon after surgery, But not while I was in the hospital, still, that we went over the images.
And I can't remember if that was before the six week I might have had a two week follow up and then a six week follow up., anyway, at one point, Dr. Meany went through the actual images from the surgery to talk me through everything. I got those on a disc. I got printouts, and I'm a total nerd about that stuff.
And, it was just that extra layer of validation of All of the crazy things that were going into my body that I felt all along for 15 years. , and so at that point, we were basically given permission to start trying at a certain point again., she was really impressed with my recovery and. Attributed that to all of the hard work that I did before leading into surgery and getting my body, re centered and balanced, nutritionally, hormonally, all of that, that it really helped my body heal quickly afterward. And what was supposed to be another, post op follow up appointment, literally was already scheduled on the calendar and the week before took a pregnancy test and it was positive. So I got to call, the office and say, Hey, I have this appointment on the calendar. It's supposed to be a post op appointment, but I actually need it to be, hopefully. prenatal appointment. And so, yeah, so we, um, we went to that appointment and ended up having our first ultrasound.
And I'm getting emotional because at one point in our journey, I had told myself that that appointment would have been like the cutoff of like, okay, if we're not pregnant by that appointment, after the surgery, after everything I've done, then it really will be like, you know, What other options do we have?
What do we need to start exploring?
And we didn't need to have those conversations because I was pregnant and so Yeah, I think that's on a happy note. That's where I'll end this episode and I'll be continuing this series Then from that point on and and take you through You pregnancy journey. Um, spoiler alert, I had HG through the majority of it.
I had high anxiety over losing, the baby the whole time, because of the fertility journey and, and my experiences before and just different triggers around doctors and everything. Um, and then, , my, , hypnobirthing class and hiring a birth doula through my actual labor and delivery. , and eventually we'll get to how I got to be here talking to you all today on this, , podcast.
, so anyway, so that was the intro to the whole series. I hope that this, episode was informative. I hope it was relatable to those of you who may have missed it. suspect that they have endometriosis or be working on their journey to a diagnosis. If you have any questions at all or want to share any pieces of your own story, feel free to reach out.
My Instagram's at breathandbirth. co. I would love to connect with you and I would love to help you, if you are on your journey to diagnosis, I would love to help you find a fellowship trained specialist so that you can get, treatment. The, the right care efficiently, and that you can also feel as heard and validated as I was with Dr. Mini here in Columbus, Ohio. All right. . Bye y'all.
Thank you so much for spending time with me today. I hope you found this episode helpful and encouraging on your journey. Don't forget to hit subscribe so you never miss a future episode. And if you enjoyed today's conversation, I'd be so grateful if you left a quick review. It helps others find the show.
For more information, visit Resources and links mentioned in this episode. Be sure to check out the show notes. You can also connect with me on Instagram at breathandbirth. co for more support and inspiration until next time, remember you've got this and you're never alone in this journey.
