Recurrent pregnancy loss & silent endometriosis – what an MD wants you to know

Can silent endometriosis cause recurrent miscarriage?

Yes, in a nutshell – but recurrent miscarriage is rarely clear-cut, and can be complex to get to the bottom of.

Getting informed on all of our options is so key to being able to better advocate for ourselves if pregnancy loss is a part of our fertility journey.

Watch the Q&A

This endometriosis awareness month, we sat down with the fantastic Dr Mona Orady, MD, FACOG Gynecologic Surgeon, to shine a light on silent endometriosis, miscarriage, and testing advocacy.

Watch as we chat through:

• Why patients come to her, and where they’re referred from
• Her experience with patients who have recurrent miscarriage as a symptom
• How many patients she sees with silent endometriosis, and the common warning signs

We also get the latest on:

• The endometriosis miscarriage connection
• Recent advancements in diagnosing silent endometriosis, and the ReceptivaDx™ BCL6 test
• The importance of self-advocacy during the testing process
• And more

Want to rule out endometriosis from your fertility journey, silent or otherwise?

Ask your physician about the ReceptivaDx™ test – a cutting-edge detection method of the BCL6 protein, associated with endometriosis.

TRB readers can get $75 off with code TRB23 on their request form.

Transcript

Eloise Edington 

Hello, good morning, good afternoon to those who are joining around the world. We have a very special Instagram Live today.

We are being joined by Dr. Mona Orady, who is an MD, FACOG, GYN surgeon, and who has her own practice specializing in endometriosis, which is very relatable and timely given it’s Endometriosis Awareness Month.

We’ll be talking about diagnosis, treatment, surgery, and testing, so please do join as she answers questions live.

Hello, welcome Dr. Orady.

Hi, how are you?

Dr. Orady 

I’m good.

Eloise Edington

We’re very privileged to have you here today. Obviously, your specialism is women’s health and endometriosis, and you are well known in the field for having your own women’s health clinic, but also for non-invasive gynecological surgery too.

So it would be great to hear a bit about you, your specialisms, and your involvement in the Endometriosis Society.

Dr. Orady 

Yeah, sure. I’m actually Canadian, so I did my medical school and my training in Canada before I came to the United States, where I started specializing in minimally invasive surgery and robotic surgery about 20 years ago.

I became very involved with the Society of Laparoscopic and Robotic Surgeons and was the Director of Robotic Surgery at the Women’s Health Institute Center for Endometriosis and Fibroids at the Cleveland Clinic for several years. That was really where I started focusing on endometriosis and changes in treatment for endometriosis.

Traditional treatments for endometriosis — I call them Band-Aid treatments — like birth control pills, or doing a laparoscopy and burning endo, or giving Lupron — are just temporary. The true gold standard, definitive treatment, especially for patients who are trying to get out of pain or seeking fertility, is excision of endometriosis.

That’s where we go in minimally invasively and carefully, gently remove the abnormal endometriosis tissue and try to preserve and restore anatomy so we can take away patients’ pain and enhance their fertility and ability to get pregnant.

We do this through microscopic, very delicate surgical procedures using either microlaparoscopy — with tiny 3mm incisions — for milder cases, or robotic surgery with a laser for extreme precision in more extensive, deep infiltrating endometriosis.

Honestly, it is just amazing the results we see here at the Orady Women’s Clinic. Patients are out of pain. They get pregnant after years of not being able to. They say it’s life-changing. It’s what keeps me going.

I travel the world giving lectures. I’m part of the Endometriosis Summit every year. I’m the president — or now past president — of SLS.

I’m always trying to push the field forward and have more people talk about this because it’s a poorly diagnosed and poorly treated disease, despite the fact that it affects one in five to one in ten women. Everyone knows someone with endometriosis — they just usually don’t know that they have it.

Eloise Edington 

How do patients normally come to you? Where do they get referred from for initial steps to seek help?

Dr. Orady 

Various sources. Mainly, the most common is word of mouth. Friends tell friends. I have all these girlfriends who have a lot of pain or are struggling with fertility — fertility groups — and they just tell them, “Oh, just go see Dr. Orady, she’ll figure out what’s wrong and fix it.”

I get a lot of referrals from fertility doctors themselves — from fertility centers where people are failing implantation, failing treatment, experiencing recurrent miscarriage. They send me those patients.

I also get a lot of referrals from gynecologists for patients who are experiencing infertility, chronic pain, fibroids, or other issues that need fertility preservation. Those are the three main sources. But also, people who listen to my talks or lectures will reach out and fly into San Francisco to be evaluated or have surgery.

Eloise Edington 

Of course. Do you often see patients whose symptoms include recurrent loss, and then under laparoscopy they get diagnosed with endometriosis? We’ve seen some research linking endometriosis and miscarriage. Can you tell us more about that?

Dr. Orady 

Yes. There’s this myth that people with endometriosis who can get pregnant — that it’s not endometriosis causing their issues. That’s actually a myth. Endometriosis affects all aspects of pregnancy. It can affect ovarian quality, ovarian egg quality, fallopian tube function, implantation, and can cause miscarriage.

So it affects every aspect of the pregnancy process. The myth of, “Oh, if you got pregnant, then it’s not endometriosis,” is not true.

Endometriosis is often associated with Müllerian anomalies. Patients may have a small septum, an arcuate uterus, or abnormalities of the uterus itself, adenomyosis, endometritis — other things that can contribute to recurrent miscarriage that we can also treat with hysteroscopy or other treatments.

Whenever I see a patient, I assess the whole system — ovaries, tubes, uterus. I never just do an endometriosis excision laparoscopically without also doing a hysteroscopy to assess the uterus and fix anything wrong there, as well as a cystoscopy.

I think that’s unique to me, and I’m actually trying to gather my data, because the rate of uterine anomalies I’ve been seeing has been at least 10 to 20%, most of them undiagnosed.

The rate of ureter and bladder abnormalities is extremely common — again, not diagnosed unless someone looks. I’ve operated on more than 1,000 patients in San Francisco alone.

I want to start publishing that data to encourage other endometriosis surgeons to look in the bladder and uterus during surgery, because it’s very common to find other things at the same time.

Eloise Edington 

Absolutely. A word we hear repeatedly in the fertility community is “silent endometriosis,” if that’s the right term.

Is that something you’ve heard of, and do you see patients who have experienced miscarriage alongside “silent” endometriosis?

Dr. Orady 

Yes. I don’t like to use the word “silent endometriosis,” but people do come to me. To me, it’s undiagnosed endometriosis.

If you actually ask these patients about symptoms, you’ll find that they have symptoms — or had symptoms in the past — they just didn’t know they were endo-related.

A lot of them have “IBS,” or “I wake up at night to pee,” or “discomfort with intercourse.” A lot of people don’t know that those symptoms are actually endometriosis symptoms — pain during periods, between periods, around ovulation. Maybe they don’t have the classic dysmenorrhea or painful periods, but they have other symptoms.

I’ve seen a few patients where, when I ask, they don’t really have any symptoms — and those are what people might call “silent endometriosis.” But to me, it’s undiagnosed.

If you look at the literature, just by virtue of having infertility and going to a fertility center, that alone puts you at a 50% risk of endometriosis. If you’ve had implantation failure or miscarriage, that risk goes up to 60–70%.

Add on an abnormal physical exam — meaning their uterus is shifted, a classic tilted uterus or cervix — now it’s 80–90% chance you have endometriosis.

So it’s like by the time they get to me, and I go through the whole history and physical exam. I’m like, it’s not silent — you have Endo, for sure. Almost 90%.

Eloise Edington 

Is that the same as a retroverted uterus?

Dr. Orady 

Retroverted — or, more important than retroverted, is the uterus being shifted left or right. We are born with our uterus in the center of our body, just like we’re born with our liver on the right and our heart on the left.

Our uterus is in the center. So, something pulling it left or right — that is not a normal position of the uterus. Retro or ante is normal — it can happen, 20% retro, 80% ante — but severe retro, where it’s flipped all the way, that’s not normal.

Eloise Edington 

Okay. Really good for people to know about these things to look out for. In terms of testing and diagnosis, how would that normally happen with undiagnosed endometriosis?

Dr. Orady 

History and physical exam — obviously, I’m Canadian — that’s the most important thing: history and physical exam by an expert.

Ultrasound, in order to detect areas, again by an expert who knows how to look for findings related to Endo.

And then the ReceptivaDx test. Biopsy is a very important way for patients who really have no other findings or we’re not really sure if Endo may be impacting their fertility.

It has up to an 87–97% accuracy in terms of endometriosis. And for those patients that I receive as Receptiva positive, to date I have never found someone who did not have endometriosis when I did their laparoscopy.

It is a nice diagnostic test for people we’re kind of on the fence with — we’re not sure they have Endo, should we really put them through surgery or not? This helps us triage those patients. Rather than putting them through surgery and not finding Endo, this gives us that reassurance: yes, there’s Endo there, and you should go get it.

Elois Edington 

Could you explain a little bit more to people who have not heard of the ReceptivaDx test and BCL6 testing — exactly how it works and what you find from it?

Dr. Orady 

It’s a very simple test. It’s a biopsy of the endometrial lining that’s performed day 7 to 10 post-ovulation, which is the time the embryo is implanting and a baby is being formed, to see if there’s this marker of inflammation called BCL6 that’s elevated.

It’s been found that with this marker of inflammation being elevated, the likelihood of endometriosis is extremely high, and the likelihood that a pregnancy will stick is low.

So the BCL6 actually predicts poor outcomes: implantation failure, miscarriage, etc. The fact that this test is predictive is a good reason to do it before you implant an embryo or try to get pregnant — especially if you’ve already been having trouble. Because the result can lead you to discovering endometriosis, even when it is “silent.”

Obviously, if someone has symptoms and is in severe pain or things like that, we already know they have Endo and they would benefit from surgery just from a quality of life perspective.

A lot of studies have shown double to triple the live birth rate after surgery as compared to before surgery. So, we can improve your fertility two- or threefold just by performing a good endometriosis excision by an expert surgeon.

Eloise Edington 

If someone has a BCL6 test through ReceptivaDx, what would happen if they tested positive? What would be the next course of treatment?

Dr. Orady 

They should see an endometriosis expert to discuss the risks and benefits of performing endometriosis surgery — or the alternative treatment, which is treatment with Lupron. That’s a medication that creates an artificial menopause to turn down the hormones and suppress the endometriosis.

There are risks and benefits to both approaches. The risk of Lupron is that it’s a medication — it has side effects, it has to be used for two to three months, and then it takes some time to get out of your system. It only suppresses the Endo; it doesn’t actually remove it. So the Endo can reactivate once you’re off the medication.

The advantage of surgery is we remove the Endo. So it should not come back — or if it does, it doesn’t come back quickly. And we know it’s there — we’ve seen it, we know where it is, we’ve removed it all.

It will mitigate a lot of the symptoms that patients have that they don’t even know they have, like painful intercourse, urinary symptoms, bloating. A lot of patients have symptoms and they don’t even know those symptoms were Endo-related.

They feel better and don’t know why until after the surgery, and they’re like, “Wow, I didn’t know I was living that way until after the surgery.”

Eloise Edington

Someone has just said the majority of Endo specialists are of the opinion that surgery or Lupron has no effect on IVF outcome. What would you say about that?

Dr. Orady 

Absolutely not true. There are very many studies that have shown positive results. As I said — double or triple the live birth rate by performing surgery. Lupron has similar improvement in implantation, but it doesn’t show improvement in natural pregnancy rates.

Eloise Edington 

Okay, this is really helpful to know. Thank you so much. I’m also aware of your time, and we’d love to do a round two follow-up with you for more questions and to talk more about endometriosis and the Receptiva DX test, BCL6.

How can people ask for this test with a physician?

Dr. Orady 

The Receptiva website has locations of physicians that are performing the test. They should also ask their fertility doctors, and maybe gynecologists who are interested in fertility. It’s not commonly available among general gynecologists.

I perform it because at least 50% of my patients are fertility-related. The other 50% are pain-related, so I offer it because I have so many patients. A lot of patients have already come to me with a positive test from their fertility physician. So that’s who I would discuss it with — to see if it’s available or if they can get it done.

Eloise Edington 

And these patients that you’re talking about women who may have had symptoms or no symptoms for many years before they have the testing done?

Dr. Orady 

Oh, many. Most patients — endometriosis starts at the average age of onset, which is age 14.

Eloise Edington 

Wow.

Dr. Orady 

So by the time I’m seeing patients, they’re in their 20s, 30s, or even early 40s, and they still don’t know they have endometriosis.

It’s actually a testament to how poorly our education system has educated people on how to diagnose endometriosis. Women can go the majority of their life without ever knowing they have it.

Eloise Edington 

So when patients come through the door, how do you decide who should have this test done?

Dr. Orady 

It’s mainly when I’m on the fence. Most patients come to me already knowing or thinking they have endo, and we’re going to do the surgery anyway — so it’s not going to change my management.

There’s no benefit to the test in those cases. But for patients where we’re not sure, or where it’s going to sway us one way or the other or change our management plan, then it’s worth doing the test.

Otherwise, if we do the laparoscopy and there’s endo, there’s no need for the test. So it’s really for the patients you’re not sure about, or who want confirmation before they do surgery that this is what’s causing their fertility issues or problems.

Eloise Edington 

Two quick questions for you. How many women seek your help with this unexplained infertility or no-symptoms diagnosis? Would you say the majority?

Dr. Orady 

I think it’s increasing. As education is increasing and patients are talking to each other, I probably see a patient with Receptiva positive almost every day. I see about 20 endometriosis patients per clinic, and probably 20 new patients per week. So it’s definitely out there, and the numbers are increasing.

But I think it’s because of events like this, where women start talking to each other. It’s not something that’s commonly available or even known among fertility doctors or gynecologists. That’s what our discussions, the Endometriosis Summit, SLS, all the lectures I give, and the research I do — that’s what it’s about: trying to improve the treatment.

But it is a relatively new test. It’s only been around a few years, and I think a lot of people just don’t know about it yet. But I think the number will increase.

Eloise Edington 

As you said, it’s about people advocating for themselves, being well educated in the right spaces.

This is why we love working with ReceptivaDx — to educate women on these options, what to look out for, how to test, etc., so you can be an advocate for yourself.

Having conversations with specialists such as yourself is really empowering, whether it’s Endometriosis Awareness Month or not. It’s super helpful and gives people options.

Dr. Orady 

Absolutely. And it’s actually really sad to me that by the time women get to me, they internally have known they have Endo for a long time — or that something isn’t normal. But a lot of them have been gaslit and denied. They’ve been told, “Oh no, you’re fine, there’s nothing wrong with you,” or “Your pain is normal,” or their concerns have been minimized.

As a woman, I’m always saying: you have to advocate. If someone’s not listening to you, you need to be heard. Find a doctor that will hear you and listen to you. You are not crazy. It’s not all in your head. If you have a gut feeling that something’s wrong, then something is wrong. Who is someone else to say that what you’re saying isn’t true?

Please don’t give up or just take it and live on. You should have a good quality of life. You should be able to have a baby. We need to get these diagnoses earlier and earlier so that women aren’t suffering for years and years before they finally find treatment.

Eloise Edington 

Amazing advice, Dr. Orady. Thank you so much.

So — advocate, absolutely. And I urge people, if you feel that you may have endometriosis or want to start conversations and investigations, please head to our link in bio to find out more about the ReceptivaDx test. Also, if you’d like to speak to your specialist, they can put you in touch.

Please do follow the link in bio, and thank you so much for your time today. I know you have surgeries and a very busy schedule, so we look forward to hopefully catching up with you again very soon for part two.

Dr. Orady 

All right, thank you so much.

Eloise Edington

Thanks, everyone. Thanks. Bye.

Bye.

Can silent endometriosis cause recurrent miscarriage, plus other questions, answered

Read this next, from the ReceptivaDx™ team: Recurrent pregnancy loss – could silent endometriosis be the cause? Here’s how you can move things forward