Q&A: Endometriosis Symptoms, Diagnosis, Treatment, and Impact on Infertility & Pregnancy
In this episode of the Breath and Birth co podcast, Vanessa, a hospital-based, DONA-certified birth doula, and childbirth educator, delves into the topic of endometriosis. She answers common questions about the signs, symptoms, and diagnosis of the disease, and discusses various treatment options, including excision surgery. She also discusses how endometriosis affects pregnancy, birth, and postpartum experience. Vanessa shares insights from her own 15-year journey to diagnosis and encourages listeners to advocate for themselves. The episode emphasizes the importance of having a supportive care team and the impact of lifestyle adjustments on managing symptoms. For more details, listeners are encouraged to check the show notes and previous podcast Episode 1 Beginning, Middle, Endo and Episode 7 One Good Egg, Perfect Timing, and a Clear Path.
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00:00 Welcome to the Breath and Birth Co Podcast
00:47 Introduction to Endometriosis Q&A
02:00 Signs and Symptoms of Endometriosis
07:08 Diagnosis of Endometriosis
09:29 Treatment Options for Endometriosis
15:20 Endometriosis and Pregnancy
20:55 Final Thoughts and Encouragement
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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 Code 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 breath and birth code.com/disclaimer.
So for today's episode, I thought it would be a good idea. I've had a lot of people reach out recently, with questions around endometriosis or wanting to schedule some time, , to discuss my experience with 'them, and they had some more specific questions, perhaps. Finding a provider or leading into excision surgery and things that they should be mindful of.
So I thought it would be a great idea to put together a specific q and a episode around endometriosis, since that's kind of becoming a niche for me. and if you have not already listened to, I highly recommend, after listening to this episode, if you're interested in hearing my own experience with my 15 year journey to diagnosis.
Episode one of the podcast goes over that. And then I also have in episode seven, called One Good Egg, perfect timing, and the clear path. that one focuses on the infertility piece of my journey, which endometriosis was a part of that.
so, like I said, those two episodes exist. Recommend, listening to them after this one, for more information and, alright, we'll dive in here.
So question number one. This is kind of a two part question, but the first part is what are the most common signs and symptoms of endometriosis, and then how is it diagnosed? So endometriosis is. So much more than just a bad period. But that's often how, people start the conversation in terms of symptoms.
So if you think you have a really bad period, whether that's severe period pain, long periods, heavy blood flow. those are all symptoms that are synonymous with. Endometriosis. it's a full body inflammatory disease and symptoms can widely vary and symptoms can overlap with other diseases or, things that you can have such as. I also have hypothyroidism.
Some people have, PCOS or adenomyosis as well as endometriosis, and that's partly what contributes. To the long time it takes for people to get an official endometriosis diagnosis because their providers are diagnosing them with pieces to the puzzle, but not the whole complete puzzle. the common symptoms include severe period pain.
oftentimes I found myself home from school or work, keeled over in pain or vomiting profusely, nausea if I wasn't vomiting. chronic pelvic pain. pain outside of your period, sometimes radiating in your back or your legs, that can be a symptom.
pain with intercourse, so any deep stabbing pain during or after intercourse. Also digestive issues. So this was something that I experienced that was actually one of my, aside from the heavy, long, painful periods. This was, a symptom that rose for me around age, I'd say between 16 to 18 years old.
is when I started to get my GI symptoms you may have experienced this, but a lot of times it's very common for somebody to have these GI symptoms and to be going through the gamut of tests and procedures to confirm any kind of food allergies or, Crohn's disease
Gluten intolerance, celiac disease, et cetera, only to learn that everything's coming back, quote unquote normal. And so you get the IBS diagnosis, which is basically, we don't have an answer for you. You have GI issues, so you have irritable bowel syndrome. those symptoms can include bloating, nausea, constipation, diarrhea.
And it may or may not be related to specific food groups. so if you do experience that, I recommend kind of honing in and paying attention to any food triggers that might be contributing to that. Not that you need to eliminate those without the care of a professional, overseeing that process.
But just be mindful so that when you do see a professional, provider with information. also fatigue, chronic fatigue and, and the kind that makes you feel like you're running on empty even when you have a full night's rest. and then the other one on my list here is infertility.
So endometriosis is a top contributor to infertility diagnosis and. I jokingly, but kind of seriously say a lot of times that when I hear someone's been diagnosed with quote unquote unexplained infertility, my first question is, have you seen.
An endometriosis fellowship trained specialist yet, because I bet you anything, you have Endo and it just was not spotted, appropriately and it could potentially be taken care of. so the amazing thing with Endo is that some people can have extreme. Symptoms and live in extreme pain and with extreme chronic fatigue.
Then there are also people who don't even know that they have endometriosis because they have zero symptoms. And so it's a full spectrum, and this is why I suggest that if you maybe are not symptomatic. You've been diagnosed with unexplained infertility, go see an endometriosis specialist and see what they can do for you.
there are multiple different types of endometriosis that, to the untrained eye, even in a laparoscopic surgery, could not be detected. That's why I say you need a fellowship trained endometriosis specialist because they know exactly what to look for, where to look for it, and the different, maybe more minor symptoms and questions to ask.
so along those same lines the second part of that question was how is it diagnosed? Unfortunately, endometriosis cannot be confirmed via ultrasound or a blood test. some of those procedures or tests may give you underlying clues as to. Yes, this is leading towards endometriosis, for instance.
hormone levels can be slightly off or, deficiencies in certain things for instance, on my ultrasound I had, a retroverted uterus, which can be a sign of endometriosis if it's already suspected. Because that can mean that the uterus is basically adhering to other pieces of the body from that endometriosis.
any kind of, pelvic exam, if you see a pelvic floor therapist, they might be able to, Tell you if they're feeling things or sensing things, that, may be an indicator of endometriosis as well. But the only definitive way to diagnose it is through a laparoscopic surgery. And this is ideally performed again by an endometriosis excision specialist because while they are in there.
What you want them to do is excise the endo at the roots. If you hear the word ablation from your provider, run ablation is burning it at its surface. It does not treat the root issue of the endometriosis continuing to grow and spread in your body. And it has the potential to create more scar tissue and more adherence, throughout your organs.
the typical OB GYN. Is not trained in endometriosis. Obviously, from everything I said and everything you'll hopefully learn through me. And the other resources I'll share is endometriosis is a very, very complex disease. Again, a spectrum of symptoms is, four different types can be found in a lot of areas in the body.
In places that you would not think it would be growing, so , a typical OB, GYN, is not trained in this. If they tell you that you have it or they suspect that you have it, it's okay to say, okay, I'm going to see a specialist in order to treat and surgically remove the disease.
and that is what I would recommend you doing.
Okay, so question number two is what treatment options are available and how do they actually work? So treatment for endometriosis is often misunderstood. Many people are told that pregnancy or birth control or even having a hysterectomy will cure endo, but that's not true. So first of all, pregnancy, you're not addressing the root endometriosis, you are just addressing the symptoms because during pregnancy, you are not ovulating and you don't have a cycle.
And that is when peak symptoms occur for endometriosis. So you're just kind of putting a bandaid on it, and oftentimes after pregnancy, those symptoms will come back potentially even worse. But then you're dealing with a brand new baby and being bedridden from endometriosis. so not recommended, but for decades in the past, that's what OBS literally would tell people that had painful periods was just get pregnant.
birth control. this can again, just suppresses the symptoms. It does not address the root cause of endometriosis. And for people like me, it didn't even do anything other than screw up my hormones even more. I tried multiple different types, at different times in my life and nothing regulated my cycle, nothing made it less painful.
And yeah, just screwed up my hormones even more. So that was not, a preferable option for myself. and then hysterectomy. So the whole, definition of endometriosis is it is endometrial tissue growing outside of the uterus. So removing the uterus itself does not cure endo.
If you have adenomyosis that can help with that, which is, that is part of the uterus,
yeah, that can help for that, but not endometriosis. You want somebody that is going to go in there and find every type of endo that could possibly be growing anywhere in your abdomen or beyond. So that brings me to ways to actually treat it, which is excision surgery. I've mentioned this several times before.
and it's a gold standard for endo treatment. Unlike ablation, which burns the surface of the lesions, excision removes the disease at the root, reducing pain and inflammation. However, it requires a skilled specialist and unfortunately, many gynecologists don't offer it. So this is where I would recommend you going on, Nancy's Nook, it's a Facebook group and it is not a support group, but it's an information
Platform essentially. Nancy has curated a list of qualified fellowship trained excision specialists around the world who, she has vetted, who have come highly recommended from people who have, undergone surgeries from those providers and continue, to maintain relationships with them.
So that. You know that you're getting, skilled provider and I'll link, that group in the show notes as well. So, hormonal suppression is an option. Again, it's not going to treat your actual endo, it will treat. your symptoms. So birth control, GnRH, agonists, like Lupron or other hormonal treatments can help some people manage symptoms, but they don't remove the existing disease.
they just simply suppress, and may slow progression. pain management and lifestyle adjustments is another treatment method. again, it's not a cure. There is no cure for endo. These methods can significantly improve your day-to-day, your living and, pain levels.
And so things like, pelvic floor therapy, anti-inflammatory diets, acupuncture, stress reduction, yoga, meditation, et cetera. and just bringing more, balance to your life if you are aware and find certain different food groups as your triggers, if you work around that or find ways to heal your gut, that can also be helpful, to mitigate those GI symptoms that you might experience.
Yeah, so the best approach in my opinion, and I think what a lot of other Endo warriors would tell you is a combination of excision, surgery, symptom management, through diet and lifestyle, and a solid care team that is qualified and that listens to you. I personally, you can listen to episode one where I go deeper into this, but, I had found through Nancy's Nook, my provider that was local people traveled, all around the state from multiple states to see her.
And I was fortunate enough that she was local here in Columbus, Dr. Mini. and. after meeting with her, decided to make the lifestyle and diet changes, for what was good for my body and trying to level out those hormones and get my cycles a little bit more regular to attempt to conceive naturally.
And in doing so, through that process, also gained other diagnoses, such as that hypothyroidism that I mentioned before. All of that leading into excision surgery so that I knew coming out in recovery, my body really was at the best place to recover quickly. And we were able to conceive the very first attempt after I was cleared to try after surgery.
And Dr. Mini really attributed that to all of the lifestyle changes I had made going into surgery. so take that for what you will. okay. Question number three. How does endometriosis affect pregnancy and birth? there's a huge concern for many people with endo around pregnancy, can I get pregnant?
Can I stay pregnant? And how will this impact my birth, my labor and delivery experience, my postpartum, et cetera. first part of this is, can I get pregnant with endo? Again, it's a highly complex disease. It differs from person to person, but yes, you can get pregnant. It might be more challenging to get pregnant if endo still present.
endo can cause scarring, inflammation, hormonal imbalances that impact ovulation and, how quickly your uterine lining sheds. some people can conceive naturally while others need reproductive assistance. Excision surgery can improve fertility outcomes for individuals. I would recommend exploring Exogen surgery before IVF treatments.
you may be able to conceive. Naturally after excision, you may have had a physical, barrier that has been removed and is no longer there. it will regardless improve your, overall wellbeing and potentially improve your chances for IVF success after excision surgery healing.
how does pregnancy impact endo symptoms? so there's the myth that pregnancy cures Endo, which I mentioned before. but that's not true. Some people do experience symptom relief while pregnant due to the hormonal shifts. Others, however, find that their pain worsens due to uterine growth, adhesions or underlying inflammation.
My personal experience was, again, we got pregnant after my excision surgery. I did have HG all through pregnancy, which was extreme nausea, up to and through my third trimester. it did start to get better, but it was much longer and much more intense than just the first trimester. And then the next part of that question, does Endo affect birth choices? so every birth is unique. I think for me. There is a lot of, Trauma around my endo journey to diagnosis and the endosurgery, itself felt very validating. And having my care provider, who was an endometriosis specialist, she was my ob, we chose her because we fully trusted her.
but that really drove the choice to stay with her and her practice in the hospital that she worked with, et cetera. and so. In terms of the mental piece, it absolutely will impact, your thoughts and feelings and perhaps the, restrictions you put on yourself in your mind. But this is where I learned from my experience that.
Being an endo warrior also makes you a really good advocate for yourself, which is so important in the birth space. And so I invite you to lean into that. there's probably a lot of anxiety around, especially if you have endo and infertility piece. for me, I had anxiety throughout my whole pregnancy around losing the baby Yeah, so there's just, there's some mental and emotional things that go along with that.endo can also impact your pelvic floor, so you may have pelvic floor dysfunction. So I highly recommend seeing, a pelvic floor physical therapist that can help with that. You may also see increased C-section rates among endo patients.
And it's not necessarily because of the endo itself, but due to the higher, intervention rates in those with complex medical histories. So if you're already labeled high risk, that might lead you down, that cascade of intervention. So knowing your options and advocating for your birth plan is key here.
also postpartum considerations. So I did mention before too, that. If you don't have the endo excised prior to pregnancy, and then you have the pregnancy which depresses your symptoms potentially, and then you have the baby, and then, depending on if you're breastfeeding or not, whenever your cycle starts to, regulate again or whatever was regular for you, even if that was irregular.
You can have an endo flare postpartum when the hormones, start to shift back. And so having a plan for pain management and follow up care is really important. So bottom line here is endo can make pregnancy and birth a little bit more complex, but it does not take away your ability to have a supported, empowered experience.
And having the right care team, both for pregnancy and postpartum, will make all of the difference. I was worried since my endo was, pretty extensive and I had some deep infiltrating endo, which is called DDIE. I had concerns around whether or not I would be able to, have a vaginal delivery just because at the time I was very naive around, it's almost like treating it like a VBAC in my mind where I had surgery on my uterus.
Pretty extensive surgery around the organs, around there, et cetera. And I was just curious, is this considered, safe for me to attempt a vaginal delivery? And, Dr. Mini gave me the all clear. Absolutely. And even if I did have a major surgery like a cesarean previously, I've discussed this in other podcasts as well, that a VBAC is absolutely your right.
you just need to be informed on what the risks are it can be a completely redemptive experience. so again, just consult with your provider. make informed decisions.
okay, so that was three, very loaded questions, but hopefully I was able to quickly give you some, answers so that you can deep dive in. I'll add some links in the show notes, including those two other episodes that I've got for you. I just want to, let you know that if you're navigating, endometriosis, either a recent diagnosis or you're on your journey to diagnosis,
You deserve to be heard. You deserve to have a care team that believes you, that supports you and helps you find real answers and treats the root cause of your symptoms. So whether you're trying to conceive or preparing for birth or managing symptoms postpartum, you're not alone in this. Your experience is valid and your voice matters.
I say it's very vulnerable to share this piece of myself, but I share it because if it wasn't for somebody else sharing their story, I would've never even known what the word endometriosis meant. so I truly believe erasing this stigma around women's reproductive health and endometriosis. Comes from, those like myself, sharing our stories, and it really, really lights me up when people reach out to me.
either themselves or I've had a lot of partners actually reach out to me and say that me sharing my story helped either themself or a loved one get their diagnosis and full treatment with excision surgery. and they're going on to live their lives like I am. Mostly pain free and symptom free from endometriosis.
So if you have any questions, please feel free to reach out, check the show notes, and I hope you listen and subscribe for more content. Thank you. 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, resources, and links mentioned in this episode, be sure to check out the show notes. You can also connect with me on instagram @breathandbirth.co for more support and inspiration. Until next time, remember. You've got this, and you're never alone in this journey.