The Challenges of Managing a Patient With Endometriosis

In part 2 of this 2-part episode, Nisha McKenzie, PA-C, speaks about managing patients with endometriosis, including the challenges and the gaps in the research of endometriosis. 

For more information on endometriosis, visit the Resource Center. 

Listen to part 1 of this episode here. 

Nisha McKenzie, PA-C, is the owner and founder of Women's+ Health Collective, a certified sex counselor, and a nationally certified menopause practitioner (Grand Rapids, Michigan). 

TRANSCRIPTION:

Jessica Ganga: Hello everyone and welcome to another installment of Podcast360, your go-to resource for medical news and clinical updates. I'm your hostJessica Ganga, with Consultant360, a multidisciplinary medical information network, alongside your moderator, Jessica Bard.

Endometriosis affects about 10%, roughly 190 million, women and girls of reproductive age around the world according to the World Health Organization. Although there is currently no known cure for the disease, early diagnosis is key in treating the symptoms that occur. Here with us today, to speak about endometriosis is Nisha McKenzie, who is a physician assistant, certified sex counselor, a nationally certified menopause practitioner. She's also the founder and owner of the Women's+ Health Collective in Grand Rapids, Michigan. Let's listen in.

Jessica Bard: Thank you again for joining us on the podcast today. We're talking about endometriosis. How should a patient with endometriosis be managed?

Nisha McKenzie: So, endometriosis has to be managed, I think from a multi-specialty standpoint. So we have to take a patient-centered approach and understand again what their core concern is. Some people are not having major pain, or major bleeding, but are suffering with infertility. So then we would go down that infertility-type road with workup and management. Then some people are not worried about fertility or are not suffering with infertility and are really just bleeding too much, so we would go down that road. So, we just really have to center it on what's their main presenting concern and then work with the patient on understanding what some of their roadblocks would be to implementing some of these therapies.

So sometimes there are financial roadblocks, sometimes there are transportation roadblocks if you're going to recommend something like weekly visits with a pelvic floor physical therapist or something like that. Sometimes there are emotional roadblocks. Perhaps you recommend a certain mode of therapy that they had a sister or mother respond very negatively to, or something of that sort. So, just understanding where they're coming from and one of the questions I ask my patients often is I'll say, "A lot of people have roadblocks to some of the recommendations that I've offered. What are some of yours?" So just kind of normalizing the fact that there are roadblocks and then what are the ones that you're running into?

Then, a multidisciplinary approach. So integrated with a gynecologist who specializes with pelvic pain and endometriosis, a primary care provider, psychologists or therapists that can help address that social and relational impact. Or sex therapists, if they're having a sexual impact. Pelvic floor PT again, because no matter what, if you're in chronic pain in the pelvis due to something that may not be originating in the muscles, those muscles that surround that organ or this area, they're protectors, they're supposed to be protectors, that's their job. So as something gets inflamed or painful, those muscles go right into spasm and they say, “woo, nope, not open for business. We're here to protect.” And they just kind of put up their blockade and say “It's Fort Knox, nobody's coming in here.”

So pelvic floor PT tends to be a mainstay of treatment for any kind of pelvic pain, but certainly for endo. Again, not that it treats the endo specifically, but it can treat the pain that comes along that is perpetuated by the endometriosis. First line therapies, a lot of times will include things like NSAIDs or non-steroidal anti-inflammatories. So Ibuprofen, Motrin, that type of thing and those can be implemented. Typically again, by the time someone's come to the office to see us, they've already tried those things and they either have or haven't worked. Continuous oral contraceptives or combined oral contraceptives so like a birth control pill. That's another first line therapy that we can use that can help decrease the amount of bleeding, which thereby often decreases the amount of pain.

They're not curative for endometriosis, but they can be helpful with symptoms. Sometimes certain progestins like norethindrone, different types of synthetic progesterones, or a natural progesterone that can also help with decreasing bleeding, sometimes decreasing pain. Depo-Provera is one option, the shot. There are plenty of risks and benefits with that, but that can be used. Levonorgestrel or progestin only IUDs, or the etonogestrel arm implant. So those are all progestin-only options that can help.

There's another group of therapeutic modalities that include things called GnRH analogs, which are gonadotropin-releasing hormone treatments. So some of the newer treatments are called GnRH antagonists and those things are basically things that, in a sense, kind of shut down the gonads, which are the ovaries, the gonadotropin. So they essentially decrease the amount of hormone that is circulating through the body that can decrease the bleeding as well as the pain, and that can be considered a first-line treatment as well, just based on patient preference, symptoms, availability, cost, coverage. There are some side effects that can be associated with that that we can address with other medications that we can add on as well.

There are aromatase inhibitors, which really shut down some of that hormone control... sorry, some of that hormone production that we have naturally and then there's surgery like a laparoscopy. The types of surgeries that are generally done are a laparoscopy either with excision or with ablation and typically excision is the standard or the preferred treatment where they basically cut out the area that looks atypical, and again, send something to the pathologist if needed for a biopsy, but then just remove that all together. Then that tends to be more curative than anything else actually.

Hysterectomy is actually one thing that's not curative for endometriosis. It can certainly slow down bleeding if you remove the majorly bleeding organ, the uterus, but those endometrial-like implants that are in the abdominal cavity or wherever they are, they will continue to bleed and that can continue to cause pain. They will usually continue to proliferate as well. So an excisional laparoscopy is considered more definitive than a hysterectomy.

Jessica Bard: I know we touched on a couple briefly just now, but what are the challenges of managing a patient with endometriosis?

Nisha McKenzie: The first challenge is getting them into the office and getting them to trust their own body and to feel comfortable telling us what's happening. One of the things I often say is we have to remember that there's a human attached to that uterus. So when we see a person and we start to envision what might be happening on the inside, it's wonderful that we've got generally this training that can help us see pathophysiologically what's happening. But we have to remember that they might again not have the finances to pay the copays to come in for visits. They might not have a sitter for their kids. They might not have transportation and they might have some other history that might make it so that they don't feel comfortable using the first-line treatment that we offer, but they also don't necessarily feel comfortable telling us that they don't feel comfortable. So I think those are some of the biggest challenges is just the socioeconomic and communication challenges that can occur between a patient and a provider.

Jessica Bard: Does endometriosis only occur in women?

Nisha McKenzie: So, there are a few cases of endometriosis reported in those assigned male at birth, but it's pretty darn rare. Generally, it occurs in those who are assigned female at birth.

Jessica Bard: What are the gaps in research of endometriosis?

Nisha McKenzie: Oh, so many. There are so many more ways we need to research this. The latest statistic I read I think was that the NIH spends a little over 40 billion a year in researching different disease states and 0.03% of that is spent on endometriosis where the prevalence rate is much higher than that. So it's not a relative rate. It's not like only 0.03% of people suffer with endometriosis.

Nisha McKenzie: So there's a big gap in the funding for research for this. Impact, I think is something that really needs to be researched more because I think if we understand impact more, we may be more likely to diagnose something that's there and these patients might not have to wait 10 years for a diagnosis. So impact, I think is something that can be diagnosed more. Pathophysiology, how is this happening? We don't really have great solid... It's all over the place. Everybody understands what's causing this. We don't have that data yet and it's not widely disseminated, the data that we do have.

So I think I mentioned before that retrograde menstruation, that tends to be kind of one of the leading theories, yet and if we actually look into the research it's been largely debunked. But if we look on one of our leading things that most healthcare providers use to resource, which is something called UpToDate, a lot of us use, it's still listed as the leading cause and one of the leading factors in UpToDate. So there are so many areas. There are some good treatments, but we definitely need more. So impact, prevalence, epidemiology, pathophysiology, treatments, all of that. That's all a gap in the research. Endometriosis is the gap in the research. That's not funny. I shouldn't laugh. It just is awful. It's the whole thing needs more research.

Jessica Bard: Yeah. Yeah. No, that makes sense. Absolutely. I think you're right. Is there an overall take-home message from our conversation today, before we wrap up?

Nisha McKenzie: I might just repeat, there's a human attached to that uterus. There's a human attached to that. Even if the uterus is gone, there's a human attached to that pelvis, that experiences this, feels this, cries about this, loses things over this. I think it's important to understand that.

Jessica Bard: Yeah, I think that's well said as well. Thank you so much for your time today and I appreciate it. Thanks for joining us on the podcast.

Nisha McKenzie: Thank you