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Long-term management of endometriosis:A case study and review of the literature

Listen to commentary from Barbara S. Levy, MD

My name is Dr Barbara Levy. I’m a practicing gynecologist outside of the Seattle area. I’ve been a past President of the American Association of Gynecologic Laparoscopists. I work as the medical director for the Women’s Health and Breast Center at the St Francis Pavilion in Federal Way, Washington

In medicine we talk about compliance, but really the goal is to educate our patient well enough for her to make the choices that make sense for her. It’s not that we tell people what to do and we expect them to do it, it is that we educate them about options. They make choices and they understand what the pros and cons of the choices should be.

You know, If I’m a woman reading about hormones, I think they're all the same. All the bad things I read about postmenopausal hormone replacement, I think it’s true of hormones at any time in my life, which is not the case. But women, the public in general isn’t sophisticated enough to understand the differences in physiology, nor should they be.

That is something the physicians really need to sit down and explain. So I think that we talk about patient counseling, we talk about explaining to a woman the difference in suppressing her ovaries using hormones…that’s different than suppressing her ovaries using GNRH agonist therapy.

What I do is I explain I actually sit down and draw a picture of the feedback loop. I show the way the pituitary gland works as the master gland of the body. When it stimulates the ovaries to make hormones, it gets feedback through blood supply that says, “OK hormone levels are high,” and it shuts off.

The way birth control pills work is by giving you a daily high enough level of circulating hormones to shut off the pituitary stimulation of the ovaries and therefore they don’t get stimulated and they shut down.

The way GnRH agonists work is they send a message down from the portion of the brain that tells the pituitary gland to shut off based on a central on/off switch, not based at all on what the circulating hormone levels are. So the pituitary shuts off, it shuts off the production in the ovary and you end up with very low or zero circulating levels of hormones.

In one instance you have high circulating hormone levels, and in the other you have zero to very low. If we’re treating conditions that are hormonally responsive, clearly it is going to be more effective for us to have low circulating levels.

And even if we need to add back to deal with symptoms, the level of hormonal treatment that we’re using to add back is really low relative to what the circulating levels would be needed to suppress the pituitary gland.

So I think the key thing is it takes time: explaining all of this, talking about it, giving a woman options, giving her information to help her make her choice, it’s really important.

The first thing is, when we’ve made the decision to do GNRH agonist therapy is to go through with women what they might anticipate as estrogen withdrawal symptoms: so the hot flashes, the night sweats, those are things most people are aware of, but sleep disturbances, memory disturbances, vaginal dryness. The dryness takes 3-4 months to kick in, so in the short course therapy is not usually a big issue, but just kind of list those things that women might experience. Some people have joint pain, muscle aches and pain.

The key thing is to let patients know that adding a small amount of hormone can help alleviate all of those symptoms. You really make sure that make sure she understands that all of the things that can happen to her are and you let her know that there’s a way to manage all of that stuff.

And then together, you have to establish pretty much a team approach: that the doctor/ patient or provider/patient relationship, is, it’s a team sport.

And she has to communicate with me, so that I know what she’s experiencing. My job is to respond to that and validate it and recognize that it is likely related to my treatment even if it isn’t listed in the PDR as one of the most common side effects. If she’s feeling different after I’ve initiated the treatment strategy, the likelihood is that her difference in feeling is related to what I did whether the book says so or not.

I sit down and I go through a list: here are the options we have for treatment, I always start with the least invasive and expensive, which might be diet and exercise and vitamins. To the most invasive and most expensive treatment. I systematically go through from one step to the next: we can do this, here are the risks, here are the benefits, here are the things you can expect with this treatment. Once I’ve listed maybe 3 or 4, however many I have, I ask her what sounds most interesting to her—in her gut, what ones are interesting. Then I may provide written information about those couple of things.

We might decide together to start with something or we may not in that first encounter. If she’s more interested in something interventional, I’ve got a lot of booklets I’ve written myself that I give her. And so at that point I recommend that she go home and think about it.

If she’s not ready to make a decision, what I do is I open the door: are your symptoms so miserable that you want to choose something today or do you want to go home and think about this.

Asking her to make a decision when you’ve just presented all this information, we present it 10 times a day, but it is the first time she’s ever heard any of it. She may need some time to cognate on what we’ve said and think through what side effects make her more nervous than others

And then I encourage her to come back in a week, or 2 weeks or whatever is a comfortable interval for her.

A lot of that depends on what their presenting compliant is. If they’re suffering on a daily basis or if you have a major problem on a daily basis, you’re much more likely to tolerate the thought of hot flashes or night sweats.

What I usually ask them to come back with a list of questions or concerns and I start by asking them, have you read through things, have you gone through the internet, have you talked to friends. What are your thoughts on where you are now compared to 2 weeks ago.

What care the things that I can I address for you to help you make your choice?

Most of the time, if she’s really not she won’t keep the appointment or she’ll call and reschedule. We won’t hear from her for sometimes six months. It’s true that if she’s not ready, then she won’t do anything. It’s frustrating if we’re centered on ourselves, but if we’re centered on the patients, which is where it really belongs.

We’re providing a service to the patient: and we shouldn’t forget that. So our job is to be a source of information a source of advice, but not a source of action unless she’s ready for it.

So I think we need to do a little bit of rethink about what our function is: we’re not supposed to tell people what to do. I get frustrated when I have someone who’s suffering, I give her advice, and she chooses not to follow that advice, which is clearly her option.

You want her to have the confidence that you won’t make her suffer for weeks with hot flushes or memory disturbances or some other thing or moodiness. If she’s got something that’s bothering her you want to let her know that you’ll respond and work it through quickly.

It’s really interesting, when people know they can get in right away and that we can deal with a problem, they’ll tolerate a problem a lot better than if it frightens them or if they’re scared. Or think it will go on for six months. The tape that’s playing in her head is it’s this bad now and it’s going to get worse, and I can’t deal with this, she’s setting her self up to be in trouble.

But if she knows, Dr. Levy said I can call any time. This is not so bad I can handle this and if it gets to a place where it’s bad I can call her.

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