The diagnosis and treatment of endometriosis in teenagers

Hugo Verhoeven, MD: “Good afternoon, my name is Hugo Verhoeven from the Centre for Reproductive Medicine in Düsseldorf. I’m on the Editorial Board of OBGYN.net and I’m reporting from the 4th COGI meeting, Controversies in Obstetrics Gynaecology and Infertility, in Berlin, Germany. 

It is a great honour for me to be talking this afternoon to my old and good friend Professor Schweppe from Westersteede in Germany. In Germany, and certainly also in Europe, he is one of the most experienced persons in the field of endometriosis. And we have chosen a very special topic for you today: we are going to talk about the diagnosis and the therapy of endometriosis especially in young adolescents. For our listeners and our viewers, first of all what would be the incidence of endometriosis in adolescents? Is it very frequent or is it a seldom phenomenon?”

Professor Karl Werner Schweppe, MD: “We have the same problem to answer this question as we have in the female population in general. There are no exact data, known literature, about the real frequency, but we estimate from special groups that about 4% to 10% of all teenagers develop endometriosis. This is not much less than the normal female population. 

We must be aware that it is not true that endometriosis is a disease that is developing after the third or even in the fourth decade. It’s an old myth that old gynaecologists have told us. That’s wrong. Endometriosis is a disease, which affects women in all age groups during the whole reproductive phase. 

When we see the literature, the incidence above the age of 30 is increasing. The reason for that is that a lot of women are going to the physician for diagnostic procedures because of infertility. This is usually the group at the age after 30. And then during the diagnostic procedure for infertility, a laparoscopy is done, and then we find endometriosis. And therefore we find an increase in the incidence after 30 but really if you are looking at the patient suffering from pain from endometriosis, a pain patient, then we have the distribution over all age groups. That means even in teenagers, 4% to 10% are suffering from endometriosis and in the entire population of patients with pain and endometriosis about 5% to 6% are teenagers. “

Hugo Verhoeven, MD: “Then, are you sure that most of the young patients and the parents of those young patients consider the possibility of endometriosis if their little girls have pain during their cycles?”

Professor Karl Werner Schweppe, MD: “No. I think only a very few percent are thinking that this can be a disease or that developing dysmenorrhoea and pain is a symptom of endometriosis; also primary dysmenorrhoea can be a symptom of a disease. 

Most parents and mothers are thinking that it’s normal and tell the young girl to wait until she is married and have her first child – then it will disappear. General practitioners are pushing the same point. And even gynaecologists are not aware that this can be endometriosis. And therefore we have the problem that there are no diagnostic procedures made and the disease is overlooked. 

You know the terrible data from Mary Lou Ballweg from the Endometriosis Association: years ago they did a lot of data collecting and found that there is a delay in diagnosis of up to 10 years between the first symptoms developed and the correct diagnosis was made! And that’s especially true for young women.”

Hugo Verhoeven, MD: “The first treatment of patients, young patients, with pain during their periods will be to give them a contraceptive medication?”

Professor Karl Werner Schweppe, MD: “That’s routine.”

Hugo Verhoeven, MD: “And that’s wrong?”

Professor Karl Werner Schweppe, MD: “That’s wrong and that’s right. That’s really a controversial point. You see the incidence of dysmenorrhoea in young patients is different in different groups, different countries, and different populations. For example, if you look at young students in the Scandinavian area, in Helsinki for example, 90% are claiming dysmenorrhoea. You cannot do a diagnostic procedure for endometriosis; there aren't invasive laparoscopies in 90% of the students in Helsinki, the female students in Helsinki, that’s impossible. Because, then you have a very high wrong positive rate for your indication. 

On the other hand, functional dysmenorrhoea, not caused by endometriosis, is treated sufficiently in 90% with oral contraceptives. Therefore we have a good symptomatic treatment for this complaint, there’s a very low incidence of side effects; in half of the young women oral contraceptives don’t have many side effects. Therefore the recommendation is we give them primarily, if they are visiting your practise and the gynaecologic findings are normal, the sonography is normal, you notice no nodules: than you give them oral contraceptives. But if this doesn’t work, then do not change to another and another and another, then think about why it didn’t work. Then we have to go on with diagnostic procedures.” 

Hugo Verhoeven, MD: “So what kind of diagnostic procedures are available and feasible?”

Professor Karl Werner Schweppe, MD: “I think if a patient that has a normal gynaecologic finding and is claiming to have moderate or severe dysmenorrhoea then you try oral contraceptives, monophasic oral contraceptives with a low dose of oestrogen and a progestins, where it is known that it has a low transformation dose of the endometrium. If this doesn’t work within three months let’s say, then I would recommend in the case of persistent dysmenorrhoea, a change to a preparation with a higher dose of progestin or a lower dose of oestrogen for another three months. If this doesn’t work then you have an indication for a laparoscopy. 

You need a laparoscopy and a biopsy to verify endometriosis. 

If you do this you can say that oral contraceptives select a high risk group prior to laparoscopy: after this selection you will find active endometriosis in more than 50% of teenagers. I think a false positive indication of lower than 50% in that kind of disease and complaints is feasible, that’s ok.”

Hugo Verhoeven, MD: “Are you saying that in patients with pain where you give them an oral contraceptive, they have no more pain, but if you would do a laparoscopy on them you would find endometriosis in a significant amount of patients…”

Professor Karl Werner Schweppe, MD: “…if they still have pain.”

Hugo Verhoeven, MD: “Yes.”

Professor Karl Werner Schweppe, MD: “If they still have pain you do a laparoscopy and 50% of them have active endometriosis, not severe, more stage one and two, mild and moderate endometriosis.”

Hugo Verhoeven, MD: “What about the patients who have no more pain during oral contraceptives? What is the chance that you miss endometriosis in those patients?”

Professor Karl Werner Schweppe, MD: “Nobody has done this. Because the pain is disappearing and there is no indication to look at this. But we think that oral contraceptives are suppressing symptoms of endometriosis, but not the development and progression of endometriosis. 

Therefore in the group, which is effectively treated by oral contraceptives, probably there are patients with endometriosis as you first mentioned, but nobody knows the percentage. 

That’s the reason that the patient should be examined gynaecologically during the treatment, or so-called treatment, with oral contraceptives every three to six months. If the patient is developing cysts, nodules, or other gynaecologic findings, or if the efficacy of oral contraceptives is reduced then you should make an indication for a laparoscopy.”

Hugo Verhoeven, MD: “Is the acceptance of a laparoscopy in those very young patients lower than in the higher age group?”

Professor Karl Werner Schweppe, MD: “I think that depends on the information the patient has. If the patient has no information about the disease and the prognosis of the disease, the problems of infertility, then the patient is seeing just the invasive procedure with anaesthesia and is afraid, and the acceptance is low. 

But if you inform the patient that endometriosis can be a severe, chronic life-changing disease, that endometriosis can threaten the fertility of the patient, and if you explain that in all departments 10,000 laparoscopies are without complications, it is a very safe procedure in experienced hands, then the acceptance I think will be high.”

Hugo Verhoeven, MD: “And, of course, I guess there is also the problem with parents if they give support for doing this, it will be easier?” 

Professor Karl Werner Schweppe, MD: “I think that that’s the same if the mother is informed. The mother will probably support your argumentation that a laparoscopy is necessary.”

Hugo Verhoeven, MD: “Let’s go now to the treatment. You have a patient and she has pain. She takes an oral contraceptive, you did a laparoscopy and you find in those very young ladies, 13, 14, 15 years old, you find tremendous amounts of endometriosis or you find endometriosis. What are you going to do in those young patients?”

Professor Karl Werner Schweppe, MD: “The first thing I would do during the diagnostic procedure is to take biopsies. Because even if it looks like endometriosis even experienced surgeons have a false positive rate of 8% to10% in peritoneal disease and up to 20% in cystic ovarian disease and so called chocolate cysts. 

Twenty percent of the chocolate cysts are not endometriotic cysts therefore I think that biopsies are necessary for diagnosis. But let’s say stage one disease, multiple, little implants on the peritoneal surface. Take two or three biopsies and the rest is vaporised by laser. Sutton has shown quite nicely this is a very effective treatment for more than 70% of the patients. Or do coagulation by thermo-coagulation like Semm has recommended, or you can use ultra-scission whatever you use to destroy the implant is fine if you are trained to do this. The method is not so important. And then you have relief of symptoms in up to 70%.” 

Hugo Verhoeven, MD: “But there must be cases also where we have severe pathology, let’s say you really find endometriomas, you really find adhesions, are you going to treat them in those young patients or are you going to say: 'listen we’re going to be very conservative and maybe we’ll do the surgery at a later stage'?”

Professor Karl Werner Schweppe, MD: “No, because endometriosis in a severe stage is a recurrent disease. You see, the recurrence rate is stage related. Waller and Shaw have shown this first and we know the problem, my colleague Martschausky has shown this also. We have up to 80% recurrence rates in three years in stage three. And up to 90% in stage four. Therefore the progressed disease in teenagers needs sufficient treatment. Sufficient treatment means laparoscopic surgery, adhesiolysis, removal of ovarian endometriomas, preserving both ovaries. Ovarectomy is not indicated in young patients even with severe endometriosis. 

Then you have to do a two-step surgery as Donnez has shown. Do a fenestration and destroy the inner wall of the cyst, then three months of a GnRH-agonist treatment, and then a second look laparoscopy to remove the residual cysts completely. The size of the cysts will shrink in these three months by about 50% of the volume, and it’s easier to preserve the ovary. If it’s a little cyst of 3 or 4 centimetres you can do cyst extraction as a first step at the first laparoscopy and you don’t need two laparoscopies. 

But then, because you can ’t treat only by surgery the disease you can laparoscopically see, and you cannot treat the microscopic implants, I would recommend in such young patients, with such severe endometriosis, three months of GnRH-agonist treatment after surgery. The idea is that microscopically implants left after surgery are destroyed by the GnRH treatment. 

And then the big question is: it’s a chronic disease, do we have anything to prevent recurrences? We don’t. Because we don’t know the aetiology of the disease therefore we don’t have anything, which is scientifically based to recommend to the patient to reduce the recurrence rate. 

We only know that pregnancy and a long-time of lactation can reduce incidence and the intake of oral contraceptives, the monophasic ones, can reduce by about 60% the development of recurrences, but only during the intake. After cessation of taking oral contraceptives the recurrence rate is increasing quite high.”

Hugo Verhoeven, MD: “So in conclusion: even in the young patients we need to be as radical as necessary but as conservative as possible and we just can hope that the recurrence, the appearance of new endometriomas and new endometriotic implants, will be as few as possible.” 

Professor Karl Werner Schweppe, MD: “I would agree with that.”

Hugo Verhoeven, MD: “I think we learned quite a lot and thank you for this interview.”

Professor Karl Werner Schweppe, MD: “Thanks so much.”