Q&A with Dr Natalya Danilyants from the US

Dr Natalya E. Danilyants, M.D. is a laparoscopic GYN surgeon, board-certified in gynecology, co-founder of The Center for Innovative GYN (CIGC), and founder of the CIGC Wellness Center in Maryland, USA. As we wrap up this year’s #EndoMonth, she spoke to Hysterical Women about the problems with endometriosis care in the US and globally.

SG: What are the biggest issues facing women when it comes to accessing endometriosis care?

ND: When it comes to pain, a lot of women are dismissed. Pain is not something concrete – not something that’s identifiable on a pelvic ultrasound or CAT scan or MRI – so, when it comes to endometriosis or pelvic adhesions, it’s not something we can easily see. That means it becomes a matter of a patient saying they are in pain and their doctor either believing them or not believing. A lot of the time, when those scan images are negative, the doctor tends to put more significance on those normal or negative images versus how the patient is feeling.

This is where the difference between a generalist OB-GYN and a specialist comes in. For a general OB-GYN, their focus is generally on deliveries, Well-Woman examinations, that kind of thing. When it comes to management of gynaecological conditions, they tend to be more conservative, so they tend to manage everything more medically, using medications rather than surgeries. Endometriosis therefore gets put into the category of painful periods, and patients are given birth control pills. A lot of the time it goes undiagnosed for years.

If a woman doesn’t have access to a specialist – meaning a surgeon who specifically specialises in endometriosis, who knows how to treat endometriosis, hoe to diagnose it properly, how to remove it properly, and how to manage it throughout her lifetime – then you have years of misdiagnoses, or not being diagnosed at all and just told that this is normal. When that happens for years and years, it’s very hard to reverse some of the permanent damage that’s been done, whether it’s psychological or physical.

How does racial bias contribute to these issues?

There are definitely disparities in endometriosis care, as far as racial biases and women of colour not getting the right care. For a long time it was thought that women who were affected by endometriosis were mostly white, and that’s just not the case. The majority of studies may have focused on white women, but that absolutely does not mean that Black women don’t have endometriosis.

I have actually seen in my practice that south east Asian women and Black women typically have more severe illnesses at the time of diagnosis. That might be because they’ve been misdiagnosed for all these years, or because they seem to be asymptomatic in earlier stages, or maybe disease progression is much faster than in white cohorts. It’s hard to identify what the issue is, but I know that, at the time of surgery, we see a lot of Indian women and a lot of Black women who have very advanced disease, which often results in permanent infertility that cannot be solved with IVF.

I see this racial bias all the time. Often if a Black woman walks through the door experiencing pain, it will automatically be assumed that she has fibroids. She’ll be sent for an ultrasound and if that doesn’t show any fibroids, or shows ‘normal’ anatomy, she automatically gets dismissed, being told: “everything looks normal, you’re fine.”

What do women and anyone with suspected endometriosis need to know about accessing the best possible care?

I think the main thing is understanding the difference between a generalist and a specialist. If you’re just going for routine care, and there’s no problem, then a general gynaecologist is appropriate. If you’re having a baby, you want to see an obstetrician. But if you have fibroids or endometriosis, you really have to go to a specialist for more appropriate care. Everyone doesn’t fit in one box, so not everyone is going to be managed with birth control pills. A specialist is going to know how best to approach each specific patient’s care, so that it’s individualised.

Sometimes physicians will say they’re a specialist, but it’s so important to ask them questions. I always encourage patients not to be afraid to ask: Doctor, how many surgeries have you done? How many of these were done laparoscopically? Just because they say they’re a specialist, what does that mean? It can mean different things to different people. Find out about your surgeon’s background, their experience, how many surgeries they’ve done, what qualifies them as an expert. That’s very, very important.

The other thing is getting a second opinion. So even if you do go to that specialist service, and five people tell you the same thing, you really have to go with your gut and trust yourself. Again, especially when it comes to pain, only you  what you feel like; no one else can tell you how to feel.

How can healthcare professionals help to make life better for patients with endometriosis?

I think the first thing is recognising how common endometriosis is, and realising that it can be very advanced by the time of diagnosis. Just because someone is young, it doesn’t mean they have very minimal disease or that you can just throw birth control pills at them to make this thing go away or improve.

It’s a surgically diagnosed disease, and it should be treated as such. Healthcare providers need to understand the impact of untreated endometriosis, and really approach each patient who has pain as if they have endometriosis until proven otherwise. I think, if we look at things that way, providers will be more open to recommending diagnostic surgery or laparoscopy. At least then you’ve diagnosed it, and at that time you can diagnose the stage, you can remove it, and you can really have a clear answer about how to manage this – whether it needs to be something more aggressive because the disease is very advanced, or if it’s a more mild grade.

There’s a huge psychological impact of, year after year, being told that everything is normal, or that the pain is all in your head. Imagine what kind of impact that has on a person when no one believes them. For patients to finally have a laparoscopy, and their doctor to say, “yes, you do have endometriosis,” is often an amazing relief. Even though they have a chronic condition that they’re going to have to deal with for the rest of their lives, at least they have an answer to all the pain they’ve experienced over all those years; they’re validated. That in itself often makes patients feel so much better and lets them move forwards.

I see this all the time. Our practice specialises in endometriosis and fibroids, so a lot of the patients we see are coming in for a second opinion. Often they’ve been with providers who they like and respect, but they feel like they haven’t gotten anywhere, and that their pain is not really addressed. They’re either being given pain medications, or they keep going to the ER and they’re labelled as drug seekers, when in fact they just don’t have the answers to their pain.

You can find Dr Danilyants on Twitter @DrDanilyants and on Facebook. You can also find the Center for Innovative GYN on Facebook and Instagram @innovativegyn