108. Endometriosis Symptoms & Diagnosis: What Every Woman Needs to Know

Endometriosis is more than just painful periods—it’s a chronic condition that can impact fertility, digestion, bladder health, and your overall quality of life. In this episode of Cycle Wisdom, Dr. Monica Minjeur unpacks why diagnosis is so often delayed, why ultrasounds and even MRIs may miss it, and when to seek surgical expertise. Through Lena’s story, you’ll see how restorative reproductive medicine provides a more comprehensive, cycle-informed approach to uncovering endometriosis and guiding treatment.
Ready for answers beyond “it’s just normal pain”? Book a discovery call today at radiantclinic.com 

Transcript

Monica: 0:01

Welcome back to Cycle Wisdom, where we empower women to restore natural menstrual cycles, to improve health and promote fertility. I'm your host, Dr. Monica Minjeur, and I'm so glad you're listening today. What if your normal period pain, bloating in your abdomen and fatigue weren't separate problems, but one condition that has been missed for years because your tests keep coming back normal. Today we're talking all about endometriosis. Why diagnosis still lags, where imaging helps and where it doesn't. When to seek surgical expertise and how cycle informed restorative care can change the game, not only from a standpoint of your symptoms but also for your fertility. This is going to be a two part episode because there is so much information to cover. So this week we'll discuss symptoms and diagnosis. And next week we'll go into treatment options that will include both symptomatic treatments as well as definitive surgical interventions, including how to find the right surgeon so you aren't stuck going back for repeat procedures over the years. So let's get started, as always, with a patient story and we'll call her Lena. Now Lena came to me and when she was 31 years old, she was an ER nurse and she had had bad periods basically her entire life, and they had worsened during college. She was worried that she was being overly dramatic and she didn't want to be just another one of those patients, but her symptoms included significant pain, oftentimes needing to call into work sick on the first couple days of her cycles. She also had significant pain during intercourse, bowel pain, and diarrhea around the time of her menstrual cycle, and she was also having some mid cycle spotting that nobody could figure out. As always, we got, Lena started with charting her cycles, and as we were charting her cycles, we also encouraged her to track when she was having pain, GI symptoms and anything else that may be going along with it. She also was able to identify that she had some low back pain around the time of ovulation, as well as finding a shortened luteal phase, so for the time from ovulation until her menstrual cycle began again. We sent her to get an ultrasound done and the ultrasound was ultimately fairly normal. However, because of the severity of her pain and how long it had been going on, I did refer her to one of our endometriosis specialists from our very first appointment As we were awaiting that surgery, we worked through different things to do from a cyclical standpoint in order to manage her symptoms. So first of all, we sent her to see a pelvic floor physical therapist. We talked through anti-inflammatory nutrition strategies. We identified hormonal abnormalities that may have been playing a role, and started her on some bioidentical progesterone during her luteal phase, and we helped to make sure that we were identifying any other underlying GI problems and trying to help manage those symptoms. In the meantime. When she went for surgery, the gynecologist confirmed that she had stage three endometriosis. She had adhesions that were tying up her bowel to her uterus, and she was able to take care of everything when she went in for surgery because they meticulously removed all of the spots of endometriosis. And we'll discuss more about what that looks like in detail next week. After her surgery, she realized that her pain dropped dramatically from a level 10 down to about a level two During her cycle. Her cycle actually also shortened in length, and she had only one day that she had any cramps at all. Her cycles were better. Her luteal phase was longer, and Lena was able to go on and conceive naturally about nine months later when they chose to, because all of that endometriosis had been removed and excised. So Lena's story is very common, and most people know somebody else in their life who has had endometriosis or who's suffering from endometriosis, or maybe you have these severe symptoms that just haven't been diagnosed yet. So what is endometriosis? Let's start there. Endometriosis is deposits of endometrial tissue, which is the inside lining of your uterus that grows outside of the uterus. Now it's not just bad cramps, but these uterine deposits that are elsewhere in your abdomen and pelvis can drive chronic inflammation, and we can find endometriosis spots on the outside part of the Utes. On the fallopian tubes, on the ovaries, but it can also be on non reproductive organs like your bladder, your bowel, your spleen, your stomach. Your liver and even on the underneath side of your diaphragm that's holding your lungs in. Now all of these can cause significant pain and inflammation throughout those areas in addition to any musculoskeletal pain, depending upon where those endometrial implants are, because they can embed, they have a blood supply to them, and that can be significantly problematic. Especially around the time of your menstrual cycle because all of your hormones are working together to make that uterine tissue contract, as well as be swollen and inflamed, and every time your menstrual cycle comes around, those uterine deposits outside of your uterus also will do the same thing. So interestingly enough, we don't have one single theory that explains why endometriosis is present and there's no. Single reason that any individual woman has endometriosis. Some of the things that we think are playing a role are what's called retrograde menstruation. Now, during your menstrual cycle, menstrual tissue frequently flows backwards through the fallopian tubes into the pelvis. Now, this happens in all women, but in certain women. We think that that tissue then survives implants and is able to kind of evade clearance from your immune system that will then help it to recruit blood supply and nerves. But again, this doesn't explain the case in all women, and many women have retrograde menstruation but don't develop endometriosis. So again, can't explain all of it. Another common cause that we think is that it may actually happen during embryonic development. So when women are in utero and everything is forming, we know that everything kind of separates and it may just transform into endometrium cells if there's certain hormonal or inflammatory things going on from an epigenetic standpoint. So meaning. Whatever your mom was exposing you to in utero may have played a role in either inflammation or immune system evasion, such that certain cells actually implanted externally even when you were still in utero. There's other theories that include things like lymphatic or blood tissue spreading, or even just unknown reasons, things like implantation into scars, so either from a C-section or other surgeries. And then there's this other overlying theory that there are different things that happen over our lifetime that may promote the survival of that endometrial tissue. Things like hormone imbalance. So we talk a lot about estrogen dominance or progesterone resistance. Other theories include immune system dysregulation, inflammation, genetics, or even epigenetic susceptibility. Now, all of these things added on top of other things like retrograde menstruation or just how you were formed initially may play a role when it comes to endometrioma. But ultimately, as I mentioned, there is no single theory that accounts for all cases of endometriosis, which is part of what makes it a little bit more challenging and problematic. Now there are a few things that we know can increase your risk for endometriosis that are associated but not necessarily specific, and doesn't mean that it's going to cause problems in all cases. So for example, women that have a family history of first degree relatives, so mom or a sister with endometriosis are more likely to also have endometriosis. Also women that have menstrual cycles, starting from an earlier age, if they have heavy bleeding, if they've never been pregnant, or if they have shorter cycles. Now all of those cases can lead to an especially estrogen dominant situation, meaning there's more estrogen with less progesterone being protective, and that ends up being one of the cornerstones for how we diagnose as well as treat. Now, unfortunately, the average diagnosis for endometriosis here in the US is seven years. And first of all, this is absolutely unacceptable to be dealing with this level of pain for seven years on average before it is actually even diagnosed. And diagnosis is oftentimes delayed because women are told, Hey, your pain is just normal. Or, yeah, you have menstrual pain. That's part of being a woman. Just deal with it. And really, this has kind of gaslit women over the years. To be able to say, okay, well, it's just normal. I have to deal with it. And yeah, I might miss a day or two of work, but this is just part of being a woman. And that normalization of pain is absolutely unacceptable. And that's oftentimes why we say in our practice, just because something is common doesn't mean it's normal. So just because it's common to deal with menstrual pain and symptoms does not mean that it's normal, and most importantly doesn't mean that there's not something we can do about it. Other reasons why diagnosis can be delayed is that it can be really variable as to the symptoms that are presented. So most women will have some degree of pain, but you can actually have what we call silent endometriosis, which means you have no pain whatsoever. Many times though, when we do a deeper dive, we'll find some other underlying system that is causing issues, whether that is GI distress, so constipation or diarrhea, whether that is irritable bladder, so maybe you're going to the bathroom all the time without any good reason, or some cases it is just infertility that's causing. And so one of the important statistics that our surgeons have worked with us to find is that in women who go on to have successful pregnancies, if they had taken more than six to nine cycles to conceive when hormones are balanced and cycles look good. We find endometriosis about 75% of the time in those cases. And once we correct that underlying endometriosis, that oftentimes is the key that unlocks being able to conceive. And so it's why it becomes a crucial cornerstone for evaluation. And we look at that critically from our very first visit of fertility to determine do we have a reason to send you to see a surgeon sooner than later? And even if we don't have a good reason based on your symptoms. We are always considering it, especially after we've had somewhere between six to nine good balanced cycles because we know that that endometriosis can still be present even if it's silent. One of the other things that limits or kind of delays that diagnosis is that it can be challenging to try and connect some of the symptoms that women have and be able to have a good diagnostic tool. So many women have an ultrasound scan done as a part of the evaluation for their chronic pain, but oftentimes, as was the case with Lena in today's story, those ultrasounds are oftentimes normal. Now, every once in a while we can pick up what's called an endometrioma, which is an actual deposit of endometriosis tissue, and this is most often present on the ovaries, but can be seen in other places. Now certain places are getting better about ultrasound scanning in that they can find how well does the tissue move underneath the ultrasound scanner. And this can be helpful when it comes to deep infiltrating endometriosis, but again, ultrasound can be completely normal. In fact, even an MRI, which is oftentimes done as a part of surgical planning, can also be normal. Now, it is still oftentimes done, again, looking for those deep infiltrating endometriosis lesions, but superficial lesions still don't show up on MRI. The bottom line here is that normal imaging studies do not rule out endometriosis, and in fact, there are times that. Uh, imaging may not even be completed, at least at a higher level because it doesn't change our recommendation to get evaluation. Now, the other piece that complicates this is there is no blood test or any quick scan that we can do at this point in time as of September, 2025. That definitively will tell us if endometriosis is present or not. Now we are seeing internationally that there are some pushes to get better diagnostic tools. There is currently a saliva test that's available primarily in Europe, but it's starting to spread to other countries as well, and that saliva test tells us yes or no. Endometriosis is present. Now, currently it comes at a fairly high price tag and it only says yes or no. Are there concerns for endometriosis? It does not treat it. It does not tell us the extent of the disease, and it doesn't tell us what to do about it. And so yes, there are some things that we're seeing coming out, but nothing that is perfect or easy, like getting a simple blood test in order to determine if endometriosis is present. And so as of the time of this recording, the only thing we have for definitive diagnosis is an actual surgical procedure, typically called an exploratory laparoscopy, where a surgeon makes a small incision in your abdomen, puts a camera inside, and takes a look around to see if endometriosis is present. Now, we're gonna talk a lot more about this procedure next week, and when we talk about treatment options, including surgical interventions, but really that's what makes it a little bit challenging is that that is the. Only definitive way that we can diagnose if it is actually present. So what does it look like if we suspect that you have endometriosis and you come to see somebody like myself who is a restorative reproductive medicine physician? So as we discussed in Lena's case, and as you hear every week on this podcast, we always start with a very detailed history. Outlining of the timeline for your symptoms, and we layer that on top of our fertility awareness-based method charting in order to identify pain, GI or urinary symptoms, bleeding patterns, and identification of ovulation. We then will always do a deep dive when it comes to those hormone patterns and especially as I mentioned, seeking out and looking for signs of estrogen dominance. Progesterone deficiency, and this can oftentimes show up as a shortened luteal phase or as PMS type symptoms. We then typically will also order an ultrasound. Again, we want to rule out anything else that may be there. And although it's rare that we actually find endometriomas or evidence of specific endometriosis on that ultrasound scan, we also wanna be paying attention to anything else that may be causing that pain. Things like an irregularly shaped uterus. Things like ovarian cyst or things that may be not related to the, the reproductive organs in the first place. Things like bowel adhesions or appendicitis, other things that may be playing a role with this. And then again, always starting that referral early when it comes to seeing a surgeon, especially if we're seeing any red flag symptoms. So things like, my pain is so bad that I'm missing school or work or life for a day or two. Every cycle, deep pain with intercourse. Bowel or bladder involvement and or infertility with a high suspicion of problems. We always are going to start the process for a surgical referral early in those cases most often because it does take time to get in to see a good surgeon. And again, we'll talk next week more about how we find a good surgeon and how to screen somebody to make sure that they are doing the correct surgical procedures in order to not only manage your symptoms, but to have definitive treatment. So that you're not needing to go back for repeat surgeries, which is so often the norm. Imagine if your pain from your menstrual cycles wasn't minimized and you were actually working with someone who knew exactly what to look for without just blowing off your symptoms. Imagine bringing a clear symptom map to a team that believes you coordinates your skilled surgical interventions when needed, and then helps your cycle to heal. You can move away from years of being told it's all normal to a plan that actually restores your quality of life, your fertility, and your hope. Make sure you tune into next week's episode where, where we'll discuss treatment strategies, including definitive surgical excision and what to do in the meantime while you await surgery for endometriosis. We're going to do a deep dive into giving you the questions you need to ask your surgeon to make sure it's the right fit. And how to manage your symptoms. In the meantime, can't wait to talk more with you again next week.

Speaker: 17:57

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