Ep. 10: Endometriosis 101

It’s Endometriosis Awareness month, and I thought that was a good enough reason to start the conversation about it here on the woven well podcast. 

As a Certified Fertility Care Practitioner, I encounter at least one client a month who is either already diagnosed with Endo or she suspects she has it. It’s not uncommon. It’s possible that 1 out of every 10 women have this gynecological condition. But many will never be diagnosed, or can spend up to 10 years seeking a diagnosis. So to help reduce that long journey to diagnosis for any of our listeners, we’re going to talk about what it is, what the symptoms are, and what to do about it if you have it. 

Let’s start with what endometriosis is: Inside a woman’s uterus are cells that are designed to thicken and then bleed during each menstrual cycle. This layer of cells is called the endometrium, and it forms the inner lining of your uterus. It’s what responds to the rising estrogen in order to thicken and proliferate, and it responds to your later progesterone to secrete important nutrients for the strength of the lining. (For more background on all of this, make sure to go back and listen to our very first episode on the BASICS of how your body works.) Now, in this uterus, If pregnancy is not registered, this lining then sheds in what women experience as a period. 

So when these endometrial type cells are found outside of the lining of the uterus, this is called endometriosis. 

And It may not seem like that would be a big deal, but these cells continue to respond to the hormones’ calls to thicken and bleed each and every cycle - but this time, outside of the uterus. This can cause inflammation, swelling, adhesions, scarring, infertility, and pain. 

The pain, of course, is the most easily identifiable. 

80% of women with chronic pelvic pain - meaning 6 months or more - will have endometriosis. 80%! This could be menstrual cramps in the abdomen, back, even down the thighs. 

Many with endo may also experience upset stomach or nausea, constipation or diarrhea, pain with intercourse, and more. 

Is any of that normal for a period? No! Hear me say that! But for so many who have experienced this pain since they were teenagers sometimes, it feels routine. So they may not mention it to their doctor. Or their doctor may not have the time in the moment to really investigate when woman says her periods are painful. 

And that can delay getting a diagnosis. So, speak up, and speak often to a medical professional you trust to help you investigate your concerns. That type of pain is not normal, and you don’t have to suffer through. There is hope! And we’re going to get to that. 

Now, the other reason a diagnosis may be delayed is because she’s not experiencing any pain at all! Pain is definitely the most commonly referred to symptom of endo, but the other primary symptom…is infertility. 

Yet, when women struggle to conceive and don’t have painful periods, it can take a long time before someone suggests the possibility of endometriosis. That’s a shame, because 50% of women struggling to conceive a pregnancy will have endo. Again, 50% - every other woman will have this condition. 

So if you have regular cycles or no explainable cause of infertility has yet been discovered for you - make sure endometriosis is on your and your doctor’s list to investigate. Knowing this yourself can help you advocate for your needs if you’re in this situation. 

But how do you find out for sure that you actually have endometriosis? 

Great question! Endo can only be diagnosed through surgery. Yep. Surgery. 

So when I’ve had a client share that their OBGYN has already told them they don’t have endo, my first question is always, When was your surgery done? 

More often than not, they’ve never had one. Instead, an ultrasound and pain screening were completed. When the u/s looked normal and the patient didn’t complain of pain, they crossed endo off the list. 

Ultrasounds can not tell you if you are free of endometriosis. 

The only way an ultrasound may give a hint to it’s presence is if you also have an endometrioma, which is when endo is present on an ovary and causes a type of blood blister that’s surrounded by a cyst. But not everyone with endometriosis has those. In my clients specifically, only one has had that. But many, many more have been formally diagnosed with endometriosis. 

Talk to the leading endometriosis professionals around the country - the only way to definitively diagnose is to look inside and test suspected tissue.  

And I get it - surgery feels scary. Many will shy away from diagnosis because of that. And it’s completely your choice whether you want to treat it or not, ok? You get to decide if you want surgery. No one else. 

But it’s important to know that not only is surgery the only form of definitive diagnosis, it’s also the only form of actual treatment.

Treatment, mind you - not pain relief. For that, there are a few more options! 

You can suppress the painful symptoms through the use of hormonal contraception, and this is the most commonly suggested approach by most OBGYNs. I really encourage you to go back and listen to episode 6 to get information on how hormonal contraception works, because this will really help explain why the painful symptoms are reduced while taking it. Again, this is not a treatment, but a pain reliever. But that may be all you’re looking for right now! I’ve talked before about informed consent. You get to decide what’s right for you, but I always want you to have quality information when making that decision. Hormonal contraception provides significant pain relief for many with endo. What it does not do is stop all growth of endometriosis or treat the underlying endo. We know that because often medical providers will have to prescribe stronger forms of contraception to take care of the pain over time. And - like all conditions - when hormonal contraception is stopped, the symptoms return. 

There are also natural approaches to pain relief from endometriosis. Reducing inflammation in your body may help, and dietary changes can play a big role in this. There have been several large studies on the pain relieving benefits of going gluten free, for instance, although please speak with your doctor and a registered dietician before cutting out something like that from your diet. While these suggestions are also not a form of treatment, many women find these natural approaches helpful until they feel open to surgery, if ever. 

If your pain is severe, you’re worried about long term health effects of unchecked endo, or are trying to conceive a pregnancy, you may be ready to consider surgery. It really can be a great option, even if it feels a bit scary. 

Remember, do your research, interview your surgeons, and make the decision that’s best for you. 

The tip I want to share is that not all endo surgery is the same. This has been proven again and again in my sample size of clients as I’ve seen women with one type of endo surgery seek out repeat procedures, while others who sought the other type of surgery haven’t had the same need. One has a recurrence rate of 80% while the other has a rate of only 20%. That’s a huge difference for a chronic condition! 

Let me then emphatically recommend the removal of endo through complete excision. Don’t worry - I’m going to explain it! :) 

Thankfully, regardless of which type of surgery you have, it will likely be done laparoscopically. This is an advancement in surgery that allows the work to be done through tiny incisions, and significantly improves recovery. 

When they explore the abdominal cavity, they are looking for any signs of endometriosis. You want a surgeon who knows them all. These often look like shotgun sprays, but there is a lot of variety in what it looks like. When the surgeon spots one of these areas, he/she can either burn off the piece (known as ablation) or cut it out (known as excision). 

This difference is critical. Excision, or cutting it off, allows the surgeon to see beyond the outer cells to assess if there is abnormal tissue below or not. If there is, that can be removed, as well, until normal tissue is seen. You wanna talk about getting to the root cause of an issue!

So that’s the first important difference - excision over ablation. 

The other key factor is how much is removed. While it’s common to quickly remove all of the major lesions visible in easy-to-reach places, that’s not good enough for you. You want a specialized surgeon who has years of experience in identifying not only fully developed lesions, but budding spots and lesions that present in non traditional ways. And spots that are in hard to reach areas! And you want them to remove every single one of them! Yes, you deserve the best. The goal with any surgery is one and done, right? And that applies here, too. 

I once had a client who had previously had endo surgery with her local OBGYN but, when she woke up from surgery, she was told that she’d have to now go to an endo specialist to have the rest removed because it was on vital organs that they were not trained to operate on. I’ve also had a client who had four ablation removals before finally seeing an excision specialist. 

If you’re going to go through the work involved with a surgery, make sure it can be as effective and successful as possible. 

So, how do you find these doctors? 

Well, talking to others in the endometriosis community can be a helpful place to start. There are online resources from others who have walked similar journeys. You’ll find that what I’ve said today is repeated over and over again. 

I’m also happy to provide you with a personal recommendation based on geography or experience. 

But ultimately it’s important that you find a surgeon that you makes you feel both comfortable in whats ahead and confident in their ability to work with excellence. 

This may be a lot of information. I realize it’s all technical and specific, and you may not have anticipated hearing so much about surgery! What I don’t want to overlook is the month in and month out - and sometimes day in and day out - experience of women suffering from endo. It can be truly horrific - whether your primary symptom is pain or infertility. 

You are not alone. And next week, we’re going to hear from someone who has and is walking this endometriosis journey herself. 

But I hope that today’s episode has left you feeling informed and, hopefully, empowered to advocate for yourself both in diagnosis and treatment. 

We’d love to field some questions, if you have any, on instagram at woven fertility. And if you’ve enjoyed these episodes, please leave us a review on your podcasting platform of choice!

Make sure to listen next week as we hear from a woman who has walked the journey I just described. Until then, thanks for joining us as we continue to explore what it means to be woven well.