I Really Hope I Have Endometriosis — Here’s Why

Updated: Jun 25

For the past couple of months, I've hoped I have endometriosis -- says no one ever, right? Or so you might think. However, in my case, I have a very logical reason why I long for this diagnosis: I want answers. And with answers comes (hopefully) a successful outcome and a start to growing our family.


I haven't blogged much lately about my personal journey with IVF and infertility -- and for good reason. At the end of March, I experienced my sixth unsuccessful embryo transfer. I was at the lowest I'd been since we began this process in early 2020. When the nurse had called me with the news of the last negative pregnancy test, she said the doctor was just about stumped -- and, from the sound of her voice, I was worried he was just about out of ideas. The only one she mentioned was redoing my hysterosalpingogram, or HSG (a test I had undergone several years earlier where a dye is inserted in your Fallopian tubes to determine any possible blockages). The first time, it found a "spasm" in my right tube. This means that it could be a blockage, but it could also be from the test itself. The test again showed the same thing It had the first time.


Because IVF is said to bypass the tubes, it's generally believed that tube blockages don't matter when it comes to embryo implantation -- however, in this case, my doctor thought it could indicate a possible implantation issue. With four embryos frozen, all I knew was that I was NOT transferring anything without getting some answers first and doing something different. The uncertainty of not knowing where to turn next was getting to me -- as was my upcoming 40th birthday.


During this time, I did a lot of research. You'd be surprised how much you learn about a topic when you have a lot personally invested. After I shared a frantic post to my fertility practice's online support group one day, I received a comment from someone who was the first to tell me about reproductive immunology -- an emerging branch of reproductive endocrinology with its fair share of believers and naysayers. However, I was willing to try anything.


I learned of two clinics that offered it -- and, while both are in New York, it was at least manageable, with one located in NYC and the other in upstate New York but having a convenient local satellite office for monitoring appointments (as anyone who's been down this road can attest, you find yourself going far more out of your way than you might ever thought you would).


I also scheduled virtual consults, filled out lots more paperwork, considered undergoing extensive bloodwork and paying hundreds of dollars for a comprehensive immunology report to determine if an overactive immune system played a role -- which I haven't yet done and may not need to do after all (the general idea behind reproductive immunology is that our bodies can see an embryo as a foreign object and attack it and also that there is a particular genetic match between two people trying to conceive together that may be missing for no particular reason). I even saw additional doctors to eliminate other possible causes of my infertility -- a rheumatologist (to look for a possible autoimmune condition), a hematologist (to detect a potential blood clotting disorder), and an integrative practitioner. Bloodwork revealed I have no autoimmune disorder and no blood clotting disorder -- a relief, since no one really wants any of these things. While I did learn that I have a sesame allergy (could this have played a role in causing inflammation?), still, the underlying cause continued to elude me.

 

Finally, in April, it came time to repeat the HSG from 2018 and discuss the results with my doctor. The test showed the same thing it did before, with the right tube showing a spasm, yet no other details could be discerned. While the doctor discussed various options, my head was spinning with all the information. I'm lucky that Jared was by my side (his science-minded, engineer brain really comes in handy sometimes). The one exciting outcome I became hopeful for, however, was the prospect of undergoing a laparoscopy, a minimally-invasive procedure where, through a small incision, the surgeon has a direct view of the uterus and the Fallopian tubes. It's performed to diagnose possible endometriosis or other cause of inflammation or blockages and, depending on the findings, to remove any potential scar tissue.


While I had never shown symptoms of endometriosis over the years (or so I thought since I find I have a high tolerance to pain and may have just overlooked something as being "normal"), I learned through my research that about 20-25% of women diagnosed with endometriosis have no symptoms -- something that's been coined "silent endometriosis." And my gut just kept telling me this has got to be something -- I've just known there has to be some other reason other than poor egg quality due to age, the blocked tube, and hyperthyroidism -- after all, women over 40 with thyroid disorders and blocked tubes have gotten pregnant, both with and without IVF.


Treatment was pretty much on hold while we waited to undergo additional testing. And, when I'd be asked about it, I'd mention the upcoming laparoscopy and my hope that endometriosis was the cause! I assumed the issue was minor, if so -- with only one "blocked" tube and no worsened prognosis since 2018 -- and that any scar tissue could be removed, thereby greatly increasing my chances of IVF success at my next embryo transfer.


Because my fertility clinic did not perform laparoscopic surgeries, I had to find an OBGYN who performs them. Fortunately, a local OBGYN had been recommended to me. Because I was looking to transition from my previous OBGYN office after my doctor left the practice, this was my perfect opportunity to transition there. However, I wasn't prepared for what he asked me during my new patient consultation.

 

"How do you feel about having your tubes removed?" the doctor/surgeon asked during my visit -- not exactly what you expect to hear. (Unless I was mistaken, this is how the conversation went.) He touted the benefits of removing one or both tubes (a procedure known as a salpingectomy) in women with infertility -- something I was totally unfamiliar with -- citing research claiming there to be a greatly increased chance of pregnancy through IVF in addition to reducing the risk for endometrial cancer.


While I needed some time to wrap my head around this, all I knew was that I feared the procedure would not uncover anything, leading me back to square one. Yet, something was causing that spasm in my right tube twice. It's not easy to determine how to proceed with the laparoscopy until the surgeon is actually doing the procedure and seeing for himself.


And it's not easy to think that the chance -- however bleak it might seem -- that a natural pregnancy would be completely unattainable at that point. I thought back to all the people who had, at one time or another, told me about a friend who stopped fertility treatments and later got pregnant unexpectedly. Well, this would, could never be me if I go that route.


While I was considering the option, I decided to discuss it with my reproductive endocrinologist, Dr. Check, and even get another opinion or two.

 

After our conversation, I had a clearer idea of how to proceed. Although he discussed the research (that he had published) in a very scientific way, I was able to get the gist: If something is found to be damaged, there's cause to remove it, but don't remove both if there isn't a reason to do so. For example, if the right tube is found to be damaged by being filled with fluid (something called a hydrosalpinx), this is cause to remove the tube entirely. In fact, he has published research with findings indicating full-term pregnancies and healthy deliveries -- both from natural conception and from IVF -- in cases where women who had a tube removed due to hydrosalpinx.


However, if the left tube appears to be completely normal, there's no medically-supported reason to remove it. If endometrial scar tissue is found, that is to be removed. If the scar tissue isn't able to be removed without risking further harm, this is also a good reason to remove the tube entirely.


In addition, the research supports some successful outcomes after the removal of scar tissue and/or a blocked tube.


I'm supposed to receive a dictated letter from my doctor summarizing our conversation that can then be used to discuss my plan for the laparoscopy with the surgeon. I also have to very clearly read the paperwork I'll be signing the day of the procedure.


Regardless of how much -- or how little -- I have done the day of this procedure, what I will have are answers. And that, to me, makes this all worth it.

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