Ayman Al-Hendy, MD, PhD 

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Eric Surrey, MD, shares his thoughts on the benefits of recognition and direct communication to patients about persistent pelvic pain and heavy menstrual bleeding.

Eric, I’m going to give you the last word. If you can briefly discuss the benefit of recognizing direct communication with the patient about these symptoms: the persistent pelvic pain, and the heavy menstrual bleeding.

Thank you. It’s so rare I get the last word, so thank you. I’m sure I won’t. Clearly, with any medical condition, intervening earlier, doesn’t matter what the condition is. As soon as you can intervene, the less invasive the treatment will be and the less complicated the treatment will be; it might even be able to be very simple. As both Linda and Stacey have beautifully stated, there has to be communication. On the clinician side, there has to be the time taken to elicit the information, and it has to be the ability to validate the patient’s concerns. Also particularly, it’s not just the adolescents who may not know that this isn’t normal. It can be the woman in her twenties who says, “I’ve always had pelvic pain, my mom has pelvic pain, and my sisters both say this is my normal.” It’s not normal, and I think you have to drill down on the questions more. Do you have pain with your periods? Not really. Go further than that. It takes effort and it takes time, but it’s very critical to elicit this.

I think as Dr Bradley beautifully stated, one thing we mustn’t do, is just have a knee-jerk start of therapy without ruling out other causes, particularly pelvic pain and particularly uterine bleeding. Fibroid doesn’t equal bleeding. A patient can have endometrial hyperplasia. Don’t start a treatment until you know that you’re treating the right thing or you feel very confident about it.

I think with regard to persistent symptoms, I would just say it’s important to, again, as we’ve talked multiple times, find out what the patient’s goals are and address them in a realistic fashion. When we look at life-long because we’re hopefully taking care of patients and hopefully the problem has changed, but OB/GYN, the beauty of our field is to have a life-long relationship with patients, particularly those that are in general OB/GYN. The needs will change. Treating the high school student who can’t go to school because of pelvic pain becomes somebody who wants to get pregnant, so these needs change over time.

I would say first, don’t persist in therapies that are ineffective. It’s frustrating to you, to the patient, and it’s just bad medicine. Secondly, make sure you’re treating the right goal because the patient’s goals will change over time. Thirdly, provide access to the patient and provide appropriate follow-up. If you start a new therapy, it should be relatively soon thereafter. As she becomes more stable, you can stretch this out, but give her access. It doesn’t necessarily have to be you, the physician. There can be physician extenders who are part of our resources to help the patient who can call in to talk to someone to see if she actually needs to be seen. Nowadays, of course, we see many less patients, but as Linda has very accurately said, there’s some things you just can’t do over a computer.

Absolutely. This has been an excellent discussion, and we hope that you found the information to be valuable to your clinical practice. Thank you all for watching this Contemporary OB/GYN KCast Program from MJH Studios. Thank you.

Videos

Benefits of Recognizing Persistent Pelvic Pain and HMB

Panel of experts discuss provider perspective to address the stigma, normalization and dismissal of common non-malignant gynecologic diseases.

Again, getting back to listening to the patients, I think we take very perfunctory histories. We F2 everything. How frequent are your periods? Every 28 days. How many days of your period? You know, we get those answers, but as Stacey mentioned, I think we need to look at how do your periods or do your periods impact the things that you enjoy in life. That can range from sports to travel, to meetings, those kinds of things. As a woman, periods can be a nuisance, but they should not impact the quality of your life. I think it’s no different than me asking a patient who is overweight or obese, how does your weight affect what you want to do? If you just pause and listen, and I know this is a little bit of a diversion, some people will say I cannot travel because I can’t walk through the airport, I can’t walk to the end of my driveway to get my mail, I can’t do certain things.

What I like to do is just to make sure we’re listening, and don’t just look at the end of the day at her CBC, with the hemoglobin of 11.4. That may be a patient who is eating 4 to 5 foods and taking iron but didn’t tell us, eating iron-rich foods and taking vitamin C. I like to just make sure we’ve asked questions. How do your periods affect your life? Is it keeping you from doing something? And then also ask, as she mentioned, some of the other questions like eating ice, their hair falling out, headaches, fatigue, and palpitations. Patients will look at you like how do you know I’m eating ice? I’m like I listen to your history. You’re bleeding like Niagara Falls, you know. Then you get their blood count back, and it’s very low.

I think you have to put it into context. What kind of pads? I had a lady the other day using 6 pads. If I didn’t ask her, I thought it was 6 pads a day; it is 6 pads at 1 time and changing 6 pads every hour. Clarification. What size pads? They’ll tell you they’re not using pads, they’re using diapers. I’ll ask, you know, what do you carry with you, and they’ll bring up purse, a satchel, or their backpack, and I’ll ask them, show me what you’re using. I think it’s the whole story. It’s impact, it’s the labs, and it’s the history. We didn’t mention also asking other things. Five to 10% of women have von Willebrand disease, and this bleeding may have been present since childhood because of that, without a family history, are there different degrees of von Willebrand disease? Making sure we try to ask for some things. When did the bleeding start? Is there a family history? Thyroid disease? I’ve picked up patients with a resident a few years ago, had leukemia with a platelet count of 6000, and she’s thinking her fibroids were the cause of her bleeding. We have to be really focused on that entire history, and looking at eyes, not eyes, look at nose and gum bleeding and easy bruising when you cut. Just kind of throw those questions out. Not to say no to every question means you don’t have X, Y, or Z, but at least in your mind, you’ve thought about things.

I just like to look at the impact of the bleeding, and, as she mentioned, is it eliminating you, taking you out of the circle of things to do things. I’ve seen residents and young doctors. They’re in med school, and they’re like, well, I would never choose surgery because I can’t scrub out to change my pad every hour. You see what I’m saying? Is it keeping you from doing something or reaching an aspiration? I have patients who say, oh, “if I’m going to be on my period and traveling; I’m in Cleveland, and if I’m on a plane and it has to sit on the tarmac for 2 hours, it’s going to be a bloody mess.” A normal woman shouldn’t have that.

Getting those interesting stories and finding out what conundrum does their period put them in and how protected do they feel that they are in; it’s like with coronavirus 2019 and buying up all the toilet paper so we all have toilet paper for our homes. Women are like I cannot leave without my backpack, and that’s kind of not normal. The word is stigma, embarrassment, and figuring out how these things are, and that’s not a normal behavior. To me, for the provider, it is just digging a deeper level, peeling back the onion so to speak, and not being so perfunctory that I close the chart, that everything is F2-ed because it doesn’t bring me any closer to her story. That, to me, has always been the most important thing and asking a few more questions.

Provider Perspective to Address Dismissal and Normalization

Expert gynecologist discusses how concealment of pelvic pain and abnormal bleeding impact women’s ability to seek treatment thus affecting their quality of life.

 If you can speak to the key factors that make a patient reluctant or want to conceal their symptoms like pelvic pain and heavy menstrual bleeding, and how would that really affect their quality of life and mental health?

Absolutely. So a bit is embarrassment; a bit is there’s some really interesting data around student athletes, and that student athletes are more likely to hide and feel anxiety around menstrual issues because they’re afraid of it being seen as a weakness or being afraid of not just not being able to participate, but actually afraid of that perception that they’ll be either seen as a weakling on the team, for example.

A key thing in terms of emerging is around the gender issues of taking the boys to 1 room and talking about sexual health and taking the girls to another room and talking about sexual health, and there’s not an overlap there that increases misunderstandings and stigma. Also breaking down our euphemisms, like “the curse” for menstrual pain. Pantone, the paint and color company, just this past month came out with the color of the year; is a red color they’re calling period. It’s amazing what is emerging. Last year, the short-form documentary that won the American Oscars was about menstruation and menstrual hygiene in India. The more those things are public, just like we’re very comfortable accepting now erectile dysfunction commercials on television and our children for a decade now have been exposed to that dialogue, the more we can have the public discourse around menstruation being a perfectly normal thing and pelvic pain being no different than if an athlete has an elbow injury that’s impacting [them]. It should be just as normal to discuss the elbow injury impacting the tennis player as it is discussing pelvic pain.

Fantastic. Some of these brought me at the society level, but how specifically, at the woman level or the patient level, can we encourage them to communicate better about these symptoms of pain and heavy menstrual bleeding? I’m going to go to you, Linda, in a second. How can we do the same from the provider side? We’ll start with you, Stacey.

The critical thing is again, those school curriculums around sexual and menstrual health, around school nursing. Now a lot of schools, unfortunately, less and less schools in the US have a school nurse. Also very much so on the kind of collagist radar which Dr Bradley will speak to but also that at the family practitioner level. It should be part of the normal routine well-check visits to be asking about menstruation and menstrual health. It should be just as normal as asking the standard questions for patients who are approaching puberty. It should be completely toned in a way that this is just a normal part of discussion, with parents present and expectations that visits during this time period of adolescence will have a conversation and questions about. Just like with small children; they ask you every time if you’re using car seats, and for adolescents, there really needs to be questions about menstrual health routinely.

Effect of Pelvic Pain on a Patients’ Quality of Life

Stacey Missmer, ScD, shares how stigma, normalization and dismissal contribute to diagnostic delays heavy menstrual bleeding from uterine fibroids.

 Stacey, I’m really going to get you started now that you’re warmed up on this because you probably contributed the most important literature in this area. Can you share with us how stigma, normalization, and dismissal; these, to many of us, seem like synonyms, but how these are distinct but somehow interrelated concepts that contribute to diagnostic delay.

Absolutely. As a reproductive epidemiologist, I focus quite a bit of my work on the impact of endometriosis and particularly endometriosis-associated pain at different points of life course—what are the impacts in quality of life and development in adolescence versus what are the impacts in women in their childbearing years versus what are the impacts as women approach the menopausal transition and post-menopausal years. We rely a lot on our colleagues in the medical sociology realm. For example, Junca Gupta had a really fun read and really interesting study published 2 years ago in 

, that did focus groups with teens in New York City. They had just over 50 teens, boys, and girls, talking through in focus groups and using vignettes to identify issues around normalization, so normalization being defined as the perception that these symptoms or experiences are normal.

One of the anecdotal jokes, but a joke based in fact, is that many adolescents have bowel issues, and a large proportion have constipation issues. It is not unusual for adolescent medicine and family doctors to ask a patient if they are having regular bowel movements, and the answer is I’m regularly having a bowel movement once a week. What is normal to 1 person, especially for these areas that aren’t talked about, which comes into the stigmatization part, as clinicians, trying to assess heavy uterine bleeding. What is normal uterine bleeding? What is a normal volume? What is a volume or a duration that is not normal?

This is very true also for dysmenorrhea. Dysmenorrhea is the only pain that’s considered normal in any realm. For headaches, there is a spectrum from a run-of-the-mill, not-that-life-impacting headache, to severely debilitating migraine. Even the run-of-the-mill, not-impacting headache isn’t considered to be something that is a normal part of one’s day and experiences, but dysmenorrhea is, menstrual cramping is considered part of the normal spectrum of gynecologic health.

A critical thing around these issues are making sure that we’re understanding both in our families and communities but particularly in the clinician-patient dialogue, and, in particular, in adolescence, that life-impacting symptoms, dysmenorrhea that is preventing girls and women from conducting their lives as they wish; that is not normal. Uterine bleeding that is impacting the ability to, again, go about one’s normal activities is not normal. What happens over time is that it’s something that we really have to consider as we think about improvements in symptoms and as we think about the life course. Women who have been experiencing heavy menstrual bleeding since their teens, often if you now survey them about how life impacting that is when they’re in, say, a decade later. They’ve been experiencing for a decade, and they’re now in their late twenties; the life impact is less. For many women, it’s not necessarily because the heavy menstrual bleeding diminished. It’s that they’ve developed coping mechanisms. There are some excellent patient groups particularly around uterine fibroids, The White Dress Project and things like that, that have a focus on seeing, recognizing, acknowledging, and also incorporating into our clinical understanding of how women alter their lives to function around and to be resilient around some of these symptoms.

Another critical thing in adolescence in particular is that these symptoms can become very isolating, in part because they’re not sure what is normal and what isn’t, so they may be embarrassed to discuss it. That in and of itself is isolating, but also what we’re seeing emerging more and more in data, particularly in qualitative research, is that teens are reporting that they are increasingly comfortable talking with friends and family members, talking to school nurses and to clinicians about what they’re experiencing, and it’s not that they’re being dismissed or ignored, but a teen who is sharing that she is struggling with a cyclic pelvic pain and dysmenorrhea, her friends may hesitate to invite her to as many things because they don’t want her to feel pressure to go or she will have said no to going to the movies, trying out for the sports team, or trying out for the school play because she’s anxious about being able to fulfill those responsibilities or anxious about being away from home and not being able to deal with her pain. The more she declines doing that, the less she gets invited to do those things, so her sphere becomes smaller and smaller.

That’s also what we see a bit in students who have difficulty going to school as regularly as they need to. It is important that teens have, you know, most public school districts and state regulations have dispensations for health reasons to miss school and tutoring and things like that, but what we find is the more students do miss that social interaction, the harder it becomes to reintegrate.

Ayman Al-Hendy, MD, PhD

Articles

Benefits of Recognizing Persistent Pelvic Pain and HMB

Provider Perspective to Address Dismissal and Normalization

Effect of Pelvic Pain on a Patients’ Quality of Life

Factors Causing Diagnostic Delays for HMB Associated With UF