Managing endometriosis in teenagers
Charles Miller, MD interviewed by Christopher Sutton, MD
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Christopher Sutton, MD: “I’m Chris Sutton and I’m speaking from the International Society of Gynaecological Endoscopy conference in Mexico. I’m talking here with Chuck Miller from Chicago. Chuck, you gave an interesting talk at the pre-congress meeting on endometriosis and chronic pelvic pain in adolescents. What is the youngest patient you’ve had with endometriosis in your experience?”
Charles Miller, MD: “Chris, I’ve seen patients as early as their early teens – 13, 14 years old. In fact, the youngest patient I’ve had and treated myself, with endometriosis and pelvic pain, was 11 years old.”
Christopher Sutton, MD: “I have a similar experience. I mean, we have a problem in our country that a lot of the general practitioners, unfortunately, particularly the female ones, tend to regard dysmenorrhoea, which of course is the leading symptom of endometriosis, as part of woman’s lot and so they say you just have to put up with it; and there can be a lag time of up to seven years between patients presenting and the actual diagnosis being made by a laparoscopy because, people just don’t accept the fact that it can happen almost from the time of the first menstrual period.”
Charles Miller, MD: “You know, it’s interesting, your comment is exactly borne out in the literature. I looked at a group of series, time of menarche, of onset of menses and subsequent pain, and first diagnosis was over five years in a number of series, so it is something that we are just not catching early enough and this really creates a problem. That young woman is having enough trouble just dealing with her identity within herself, and now taking on this tremendous problem of pain which is generally the number one symptom found, whether it be a-cyclic pain or cyclic pain, and then problems with bleeding, as well. It is a job that we need to do better.”
Christopher Sutton, MD: “Chuck, you know you must be aware of this consensus report of the pelvic pain study group in the United States, suggesting that maybe laparoscopy shouldn’t be performed early on in these patients; that you should do really quite a prolonged trial, not just with oral contraception, but also with GnRH-analogues and Danazol, second-line therapy, and really the laparoscopy takes place much, much later. Do you think that’s good advice or do you think you should, in fact, establish the diagnosis early on?”
Charles Miller, MD: “You know, Chris, 20 years of treating these types of patients, the young adolescent, adolescents with pelvic pain, I truly believe that the hallmark of diagnosis continues to be the laparoscope and, let’s face it, we need to identify our patients better. Twenty-five to 38% of patients will present with endometriosis with chronic pelvic pain; 50% of that adolescent with dysmenorrhoea has pelvic pain. But now, if you do not respond to oral contraceptives and non-steroidal anti-inflammatories, the risk of endometriosis in those patients is 75%. So I feel, in those cases, that if a patient does not respond early on to non-steroidals and a trial of oral contraceptives, I think it is important to go in and take a look and identify those patients absolutely.”
Christopher Sutton, MD: “I agree with you. I think there’s a real problem just continuing with drug therapy over the years. We know clearly, we have evidence in our laser laparoscopy studies that at least 75% respond well just to the initial laser laparoscopy. You don’t get such good response rates with the drug therapy and there’s really no evidence that suggests that that is the correct way forward.
Now, Chuck, you were talking about the very young teenagers and saying that probably the oral contraceptive should be avoided in the very young ones. Would you like to elaborate on that?”
Charles Miller, MD: “Right. One of the points that I made in my discussion is that for years we have talked about non-steroidals and then use of oral contraceptives in patients to not only treat, but also help identify that young patient, who may have endometriosis.
But, there’s a particular problem in the truly young adolescent – the patient, who is still growing. It is my contention that, in fact, if you give that patient oral contraceptives early on and she is still growing, that in fact you may, may retard her growth and cause early closure of her growth plates, her epiphyseal plates, because of the oestrogen effect.
If that patient presents to us with pelvic pain, with dysmenorrhoea, I think it is important to look at bone age and to look at the growth plates, feel very comfortable in treating those patients with oral contraceptives if those growth plates are fused, but if they are not fused, then I think that patient should be given a trial of a GnRH- agonist with very low-dose or even no add-back therapy, low-dose oestrogen/ progesterone, or no oestrogen or progesterone at all, because I am concerned about this closure.
Now obviously what that does, Chris, is unfortunately it might even drive that patient earlier on to a laparoscopic approach in terms of her evaluation. But, my gosh, when I look at the medical agents out there, whether it be oral contraceptives and the closure of the growth plates, continuous oral contraceptives and breakthrough bleeding; medroxyprogesterone acetate, Provera and spotting; Depo-Provera and the potential concern about long-term menstrual irregularity; Danazol and masculinizing symptoms, I certainly think that. Then one more thing, GnRH-agonists, as well as Depo-Provera and the concern about bone loss, I think we have to make sure we are treating that patient correctly.”
Christopher Sutton, MD: “Right. So I think you and I are probably of an opinion that, really, laparoscopic treatment, and by that we mean effective laparoscopic treatment at a relatively early stage, is still actually the cornerstone of our approach?”
Charles Miller, MD: “I totally agree with you and, let’s face it: whenever I talk about success with laparoscopic surgery, I certainly have to mention all the great work that you’ve done all these many years with ablation and laser techniques. It also helps in the diagnosis.
Interestingly enough, at the same time I do laparoscopic surgery, I also do cystoscopy and I do hydro-distension where I fill the bladder with fluid and then take that fluid out and oftentimes I will see punctated haemorrhage within the bladder. If, indeed, I see that, I’ll come back and do what we call a potassium challenge test and if that potassium test is positive, I believe that that patient should be treated for interstitial cystitis, a chronic inflammation of the bladder. Interestingly enough, Chris, we are seeing as many patients with bladder inflammation as we are with endometriosis coming in with pelvic pain and I believe it should be part of our routine evaluation.”
Christopher Sutton, MD: “I think you’re absolutely right. I remember when we did our first five-year follow-up when we started doing this laser treatment about 20 years ago and the patients that didn’t get better – if we did a second look, we often didn’t see any endometriosis anymore, and as Chuck has said, some of these patients, in fact, have interstitial cystitis and in the slightly older age group, irritable bowel syndrome, which has incredibly similar pain to endometriosis, and of course it can be cyclical because the blood flow to the bowel increases at the time of the menses, so they can falsely think that it’s gynaecological because of this connection with the periods; but, in fact, it’s entirely coming from some problem with the actual motility or the movement of the bowel. So, I think you have to exclude these other causes in your so-called failures because, in fact, they might not be a failure, it might be that you have actually cured the endometriosis and they have other reasons for the pain.”
Charles Miller, MD: “I’ll just re-emphasise what you just said about GI disturbances. Even in the adolescent: roughly one in three adolescents, with endometriosis, will complain about bowel disturbances, so it certainly has to be looked at and considered when we are evaluating these young patients.”
Christopher Sutton, MD: “Well, I think that, in conclusion, we both agree that early laparoscopy, after simple therapeutic measures have been tried, is still the mainstay of our diagnosis and treatment. After all, with these very, very thin laparoscopes, which give brilliant vision and really very sophisticated treatment of either electrosurgery or lasers, it is safe; I mean we have treated 13,500 patients with the CO2 laser over the last 23 years and, touch wood, we haven’t had a single accident with the CO2 laser, so we’re not talking about some kind of Star Wars therapy that’s frightening, it really is very safe and in the majority of cases it’s very effective at the first treatment.”
Charles Miller, MD: “Not only can you treat the endometrial implant itself, you can treat adhesions and, at times, we can even go so far, particularly when a patient is complaining of midline disease, dysmenorrhoea, she may even be a candidate for a presacral neurectomy, and we’ve had excellent results with both dysmenorrhoea, as well as midline chronic pelvic pain, with utilising the presacral neurectomy as well. So I think there’s a lot for us to do. We just have to identify our patients correctly and do the diligent work!”
Christopher Sutton, MD: “Well, thank you, Chuck, and it’s been a pleasure talking to you.”
Charles Miller, MD: “Thanks, Chris.”
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