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Endometrio­sis — When pain becomes the norm

A detailed report on the treat­ment plan at the Char­ité Women’s Clinic.

Endometrio­sis is one of the most com­mon abdom­i­nal dis­eases in women. Rough­ly every 10th woman suf­fers from the symp­toms, and it often takes years. Until then, many women try to some­how cope with their pain. They believe that even the most severe pain is nor­mal and part of the men­stru­al peri­od
. In order to find ways to deal with the symp­toms or to start ther­a­py, it is impor­tant to get to know your own body and its reac­tions. Good infor­ma­tion and work­ing with expe­ri­enced, sup­port­ive doc­tors. In order to give you a bet­ter insight into the ther­a­py, we have put togeth­er this arti­cle for you.

Spe­cial­ly trained gyne­co­log­i­cal experts work at our endometrio­sis cen­ter. Knowl­edge and exper­tise on this com­plex dis­ease are bun­dled here. There is close coop­er­a­tion between dif­fer­ent med­ical disciplines.

In Ger­many, it takes an aver­age of six years from the appear­ance of the first symp­toms to the diag­no­sis of endometrio­sis. The rea­sons for this unnec­es­sar­i­ly long path of suf­fer­ing are usu­al­ly a lack of knowl­edge and expe­ri­ence with this dis­ease. This is exact­ly where the idea of ​​a cer­ti­fied endometrio­sis cen­ter comes in: Here, patients are cared for and treat­ed by spe­cial­ly trained experts. In this way, knowl­edge and com­pe­tence are bun­dled and used for the ben­e­fit of the patients. The col­lab­o­ra­tion between the
med­ical dis­ci­plines is prac­ticed daily.

Endometrio­sis is one of the most com­mon abdom­i­nal dis­eases in women. The cause is the accu­mu­la­tion of uter­ine lin­ing out­side the uterus. Experts also refer to such tis­sue islands as “endometrio­sis foci”. They can hap­pen with­out a woman notic­ing. For oth­ers, how­ev­er, endometrio­sis is a chron­ic con­di­tion that caus­es severe pain and low­ers fer­til­i­ty. It often takes years before endometrio­sis is iden­ti­fied as the cause of the symp­toms. Until the diag­no­sis is made, many women try to some­how man­age their pain. They believe that even the most severe pain is nor­mal and part of the men­stru­al period.

So far, endometrio­sis can­not be com­plete­ly cured — but there are var­i­ous ways to treat the symp­toms. If the ther­a­py is tai­lored to the per­son­al cir­cum­stances and the sever­i­ty of the dis­ease, many women can live quite well with endometriosis.

As with oth­er chron­ic dis­eases, it is impor­tant to get to know your own body and its reac­tions in order to find ways to deal with the symp­toms. Good infor­ma­tion and work­ing with expe­ri­enced, sup­port­ive doc­tors can help.

Symp­toms

The main symp­tom of endometrio­sis is abdom­i­nal pain. They often occur with the men­stru­al peri­od, dur­ing or after inter­course. The pain can some­times be stronger, some­times weak­er and radi­ate into the low­er abdomen, back and legs. They are often expe­ri­enced as cramp­ing and can be accom­pa­nied by nau­sea, vom­it­ing and diarrhea.

How the pain is expressed also depends on where the uter­ine lin­ing has set­tled in the abdom­i­nal cav­i­ty. For exam­ple, foci of endometrio­sis can grow on the out­side of the uterus or in the wall of a fal­lop­i­an tube. Often the ovaries, the “Dou­glas space” between the uterus and rec­tum and the asso­ci­at­ed con­nec­tive tis­sue are also affect­ed. When the ovaries or fal­lop­i­an tubes are affect­ed, fer­til­i­ty is often impaired.

Some­times foci of endometrio­sis also form in organs such as the blad­der or intestines, which can lead to prob­lems with uri­na­tion and bow­el move­ments. Severe endometrio­sis can severe­ly reduce qual­i­ty of life and performance.

To give you a bet­ter impres­sion of the treat­ment options, we have cre­at­ed a chrono­log­i­cal overview of a pos­si­ble treat­ment plan for you in the fol­low­ing sec­tion. A typ­i­cal endometrio­sis ther­a­py in our endometrio­sis cen­ter (lev­el III) looks like this:

1. First presentation

Now it’s on, your first appoint­ment in our endometrio­sis cen­ter. Per­haps you were lucky and your doc­tor advised you ear­ly on that your symp­toms could be relat­ed to endometrio­sis. Per­haps you felt like many oth­er fel­low suf­fer­ers and it cost you years and many vis­its to the doc­tor before the word endometrio­sis was used for the first time.

The aim of the first appoint­ment, the so-called first pre­sen­ta­tion, is first and fore­most a detailed sur­vey of your med­ical his­to­ry (anam­ne­sis). In order to opti­mal­ly pre­pare for the vis­it, we ask you to fill out our anam­ne­sis sheet in advance. This helps you not to for­get cru­cial facts in the excite­ment of the doctor’s talk. It will help your doc­tor to ful­ly under­stand and doc­u­ment your symp­toms (symp­toms).

In a per­son­al con­ver­sa­tion, the results of the anam­ne­sis sheet will be sum­ma­rized with you and it will be worked out which com­plaints are in the fore­ground. Not only your pain and bleed­ing prob­lems play a role here, but also, for exam­ple, diges­tive prob­lems, whether you want to start a fam­i­ly in the near future and how much you or your part­ner­ship are bur­dened by your symptoms.

With your con­sent, your doc­tor will then car­ry out a detailed phys­i­cal exam­i­na­tion. You prob­a­bly already know a lot from your reg­u­lar exam­i­na­tions at the gyne­col­o­gist. Nonethe­less, an exam­i­na­tion for sus­pect­ed endometrio­sis is a lit­tle more detailed:

At the begin­ning, a so-called mir­ror adjust­ment (specu­lum exam­i­na­tion) is car­ried out. It is pos­si­ble to inspect the entire exter­nal gen­i­talia (vul­va) and the vagi­na. In par­tic­u­lar, the cervix (por­tio) and the pos­te­ri­or vagi­nal vault must be exam­ined care­ful­ly, since endome­tri­al foci may already be identified.

Next, a pal­pa­tion exam is per­formed. The doc­tor inserts one or two fin­gers one after the oth­er into the vagi­na. Endome­tri­al foci on the cervix or between the vagi­na and rec­tum, which can be felt as painful indura­tions or nod­ules, are often noticed here. You can also feel the posi­tion and mobil­i­ty of the uterus and pos­si­bly cysts on the ovary by addi­tion­al­ly touch­ing the abdom­i­nal wall with the oth­er hand (biman­u­al pal­pa­tion exam­i­na­tion). You can also judge whether your pelvic floor mus­cles are already very tense due to your symp­toms. At the end of the pal­pa­tion exam­i­na­tion, a fin­ger is also insert­ed into the rec­tum (rec­tal exam­i­na­tion) while anoth­er fin­ger remains in the vagi­na. This is par­tic­u­lar­ly impor­tant in order to pal­pate pos­si­ble endome­tri­al foci with bow­el involve­ment. Unfor­tu­nate­ly, these are still often unde­tect­ed, which is why we attach great impor­tance to this part of the inves­ti­ga­tion. Even if a rec­tal exam sounds embar­rass­ing or uncom­fort­able at first, your doc­tor will help you relax and you will see that this part of the exam is nowhere near as uncom­fort­able as you thought.

The pal­pa­tion exam­i­na­tion is fol­lowed by an ultra­sound exam­i­na­tion. Because it is much eas­i­er to assess, the ultra­sound head should be insert­ed through the vagi­na (trans­vagi­nal­ly). Each exam­in­er has his own scheme, which helps to assess all organs in sequence and not to for­get any. A look at the uri­nary blad­der already allows one to con­clude whether it is affect­ed by endometrio­sis. It should also be assessed in each case whether endome­tri­al foci can be seen between the vagi­na and rec­tum or whether there are oth­er­wise indi­ca­tions of intesti­nal involve­ment. An assess­ment should be made of whether the uterus can move to the blad­der and bow­el or whether there is already evi­dence of adhe­sions. The exam­in­er will also take a close look at the uterus itself — the ultra­sound can often detect endometrio­sis of the uterus (ade­no­myosis or ade­no­myosis uteri). The ovaries are also thor­ough­ly inspect­ed. If there are so-called endometri­omas (endometrio­sis cysts on the ovary) in this area, this can be eas­i­ly rec­og­nized with the ultra­sound. If you have dealt with endometrio­sis a bit, you may already know that endometrio­sis foci are often on the peri­toneum. These foci can usu­al­ly not be seen in the ultra­sound. All oth­er typ­i­cal local­iza­tions, on the oth­er hand, can be assessed with ultra­sound Very young women in par­tic­u­lar are increas­ing­ly find­ing their way to us for con­sul­ta­tion hours. If you have not had sex­u­al inter­course before, a trans­vagi­nal ultra­sound is often not possible.

Many doc­tors then do what is known as an abdom­i­nal ultra­sound. With this method, how­ev­er, an assess­ment of the organs as described above is only pos­si­ble with dif­fi­cul­ty. In this case, we there­fore rec­om­mend an ultra­sound from the intes­tine. That sounds uncom­fort­able at first (the doc­tor is of course aware of this), but you can use it to assess the organs just as well as with an ultra­sound from the vagina.

A kid­ney sound may be per­formed after the trans­vagi­nal exam­i­na­tion. If the pre­vi­ous exam­i­na­tion revealed indi­ca­tions of deeply infil­trat­ing endometrio­sis with involve­ment of the ureters, your doc­tor must rule out that there is already an obstruc­tion of the urine. Uri­nary con­ges­tion does not cause any dis­com­fort at the begin­ning and so it can progress unno­ticed until the kid­ney may no longer func­tion prop­er­ly. For­tu­nate­ly, that’s rarely the case with endometriosis.

After the anam­ne­sis and the exam­i­na­tion, the find­ings are sum­ma­rized and the like­li­hood of the diag­no­sis of endometrio­sis is dis­cussed. To make the diag­no­sis of endometrio­sis, from our point of view, no con­clu­sive surgery with a tis­sue exam­i­na­tion is nec­es­sary. A trained doc­tor can make the diag­no­sis with a high degree of cer­tain­ty based on the med­ical his­to­ry and exam­i­na­tion results.

At the lat­est after the diag­no­sis has been made, the time has come to explain what endometrio­sis actu­al­ly is, how it devel­ops, which ther­a­py options are avail­able and which steps are sen­si­ble for you at the cur­rent time. This depends large­ly on your com­plaints, your exam­i­na­tion results and your cur­rent life sit­u­a­tion. At the end of your first appoint­ment, you and your doc­tor will deter­mine a treat­ment plan that will meet your needs and your indi­vid­ual situation.

Endometrio­sis is a chron­ic dis­ease and although we can now do a lot to alle­vi­ate or even elim­i­nate symp­toms, we can­not (yet) cure it. This means that endometrio­sis will like­ly be with you for as long as you are men­stru­at­ing. In addi­tion, every step of ther­a­py will require your coop­er­a­tion — regard­less of whether you reg­u­lar­ly take a hor­mone prepa­ra­tion, an oper­a­tion is planned and / or you are deal­ing with endometrio­sis with the help of a mul­ti­modal pain ther­a­py con­cept. Because of this, it is impor­tant that you have a good under­stand­ing of this con­di­tion. We would like to help you on this path and on the one hand explain the next steps to you using the treat­ment plan on your per­son­al path and on the oth­er hand answer and clar­i­fy gen­er­al ques­tions using the guide.

Our tip: Write down all your ques­tions now!

Fur­ther diagnostics

Some­times fur­ther diag­nos­tic mea­sures are use­ful in order to assess the spread of the endometrio­sis even more pre­cise­ly and to be able to plan the fur­ther pro­ce­dure reliably.

This can include the fol­low­ing examinations:

● Sig­moi­doscopy with endosonog­ra­phy (exam­i­na­tion of the rectum)

This is a spe­cial type of colonoscopy in which a flex­i­ble tube with a spe­cial ultra­sound head at the tip is insert­ed into the intes­tine in order to be able to assess the wall lay­ers of the intes­tine with regard to endometrio­sis ingrowth. With the com­bined rec­toscopy, in which one can also assess the inner­most lay­er of the intesti­nal wall using a cam­era inte­grat­ed in the tube, any con­stric­tions can also be assessed.

● Colonoscopy (com­plete colonoscopy)

In a clas­sic colonoscopy, a flex­i­ble tube is also insert­ed into the intes­tine. In con­trast to endosonog­ra­phy, this has an inte­grat­ed cam­era and can there­fore only assess the intesti­nal mucosa, i.e. the inner­most lay­er of the intes­tine, from the inside. How­ev­er, endometrio­sis ingrowth into the inte­ri­or of the intes­tine is very rare and can usu­al­ly only be detect­ed dur­ing the bleed­ing. This exam­i­na­tion alone is there­fore rarely help­ful in diag­nos­ing endometrio­sis. In indi­vid­ual cas­es it is nev­er­the­less use­ful to be able to dis­cov­er high-lying intesti­nal sec­tions and pos­si­ble con­stric­tions caused by endometriosis.

The lat­est devices have an endo­scope with an inte­grat­ed cam­era and ultra­sound head, so that endosonog­ra­phy and colonoscopy can be com­bined. Of course, all exam­i­na­tions are not dan­ger­ous and help us a lot to bet­ter under­stand your illness.

● Kid­ney scintigraphy

With a kid­ney scintig­ra­phy, the func­tion­al­i­ty of both kid­neys can be clar­i­fied. This should be con­sid­ered if the ultra­sound scan shows a kid­ney con­ges­tion. In con­trast to the blood tests, a sep­a­rate analy­sis of the kid­ney func­tion is pos­si­ble. You do not have to be fast­ing for a kid­ney scintig­ra­phy, you should in par­tic­u­lar ensure that you drink enough flu­ids. Water is best here. If you lie qui­et­ly for at least 30 min­utes, a slight­ly radioac­tive sub­stance is applied to you via a flex­ule (indwelling vein catheter), which is first dis­trib­uted in the body and then excret­ed via the kid­neys. lie qui­et­ly, a slight­ly radioac­tive sub­stance is applied to you via a flex­u­la (indwelling vein catheter), which is first dis­trib­uted in the body and then excret­ed via the kid­neys. A spe­cial cam­era will take pic­tures of you for at least 30 min­utes and can thus trace the path of the radioac­tive sub­stance in your body and ana­lyze the amount excret­ed via the kid­neys. The exam­i­na­tion is asso­ci­at­ed with a low radi­a­tion expo­sure, which cor­re­sponds to about a third of the annu­al nat­ur­al radi­a­tion expo­sure in Ger­many. The radi­a­tion expo­sure can be fur­ther reduced by emp­ty­ing the blad­der after the examination.

● cys­toscopy

If blad­der endometrio­sis is sus­pect­ed, a urol­o­gist or some­times a gyne­col­o­gist can do a cys­toscopy. The sur­face of the blad­der wall can be assessed from the inside, but not seen through the dif­fer­ent lay­ers of the blad­der wall. If the blad­der wall bulges inwards due to the pen­e­tra­tion of endometrio­sis into the wall, a tis­sue sam­ple may be tak­en to con­firm the diag­no­sis. Removal of the endometrio­sis through the blad­der does not make sense, how­ev­er, since the endometrio­sis can­not be com­plete­ly removed through this access. A cys­toscopy is also done if the ureters need to be splint­ed. This is use­ful, for exam­ple, in the case of ureter or kid­ney con­ges­tion under cer­tain cir­cum­stances, as well as before exten­sive oper­a­tions in the area
the ureter.

● MRI

Mag­net­ic res­o­nance imag­ing (MRI) is a sec­tion­al imag­ing with­out x‑rays or radioac­tive rays. With the help of a strong mag­net­ic field and radio waves, very pre­cise images of the inside of the body can be cre­at­ed. With­in the pelvis there is no addi­tion­al ben­e­fit from MRI to trans­vagi­nal ultra­sound in the hand of a trained per­son. Out­side the pelvis, how­ev­er, MRI is supe­ri­or to all oth­er non-inva­sive exam­i­na­tions, so that if atyp­i­cal or very pro­nounced endometrio­sis is sus­pect­ed, an MRI should be con­sid­ered for bet­ter ther­a­py and sur­gi­cal planning.

Com­put­ed tomog­ra­phy (CT) does not play a role in the diag­no­sis of endometriosis.

● Pre­sen­ta­tion of the fer­til­i­ty center

If you have been try­ing to become preg­nant for more than a year with­out suc­cess, you should intro­duce your­self to a fer­til­i­ty cen­ter with your part­ner. There, fur­ther exam­i­na­tions of your hor­mones as well as exam­i­na­tions of your part­ner will be car­ried out (e.g. check­ing the semen qual­i­ty (spermiogram). A com­mon timetable and arrange­ments with you between your doc­tor and your fer­til­i­ty cen­ter are essen­tial. For exam­ple, an oper­a­tion to rule out endometrio­sis should only be car­ried out if male caus­es of steril­i­ty have been ruled out.

● If nec­es­sary, oth­er dis­ci­plines (gas­troen­terol­o­gy, gen­er­al surgery, ENT, …)

Depend­ing on the com­plaints, it may be use­ful to include oth­er dis­ci­plines in the diag­no­sis. Under cer­tain cir­cum­stances it can be use­ful e.g. food intol­er­ance or chron­ic inflam­ma­to­ry bow­el dis­ease
to be exclud­ed before fur­ther diag­nos­tic or ther­a­peu­tic steps are initiated.

medical cross-section of a woman's abdomen with inscription of the genital organs.

Ther­a­py pil­lar 1: mul­ti­modal therapy


Endometrio­sis is under­stood as a chron­ic dis­ease, so that we dis­cuss the var­i­ous options of mul­ti­modal ther­a­py, hor­mon­al ther­a­py and / or surgery and work togeth­er to devel­op an indi­vid­ual ther­a­py con­cept that is adapt­ed to the respec­tive life situation.

We will intro­duce you to the pil­lars of treat­ment in more detail below.

Pil­lar 1: The mul­ti­modal therapy

By the term “mul­ti­modal ther­a­py con­cept” we mean a mul­ti­tude of sup­port­ive mea­sures that counter your month­ly pain on dif­fer­ent lev­els. In some cas­es, there is no sci­en­tif­ic evi­dence (no sci­en­tif­ic evi­dence) that the method helps. Nev­er­the­less, in this case the prin­ci­ple “he who heals is right” applies. That means: if a method helps you, you don’t need sci­en­tif­ic proof of it.

The mul­ti­modal ther­a­py con­cept should accom­pa­ny you in any case — regard­less of whether you decide with your doc­tor for con­ser­v­a­tive or sur­gi­cal ther­a­py. Some meth­ods of ther­a­py are pre­sent­ed below. It is then up to you to try them out and find out for your­self what helps you. This path can be very indi­vid­ual and varies from patient to patient. This can also take some patience and self-dis­ci­pline at times. Some­times it is not that easy to find what helps you the most among all the offers. Per­haps reha­bil­i­ta­tion treat­ment (“rehab” for short) is then suit­able for you, dur­ing which you will get to know var­i­ous ther­a­py options.

Med­i­c­i­nal pain therapy

While hor­mon­al or sur­gi­cal ther­a­py is aimed at com­bat­ing endometrio­sis itself, the aim of drug pain ther­a­py is to com­bat the pain caused by endometrio­sis. This is impor­tant because the human body has what is known as a “pain mem­o­ry”. This means that if the pain per­sists, the body will send pain sig­nals to the brain at some point even if the pain stim­u­lus is no longer present. One then speaks of chron­ic pain. It also hap­pens that the body per­ceives long-stand­ing pain even more intense­ly. In the process, the painful area of ​​the body is enlarged and a sim­ple touch can be painful in the sen­si­tized area.

For this rea­son, it is rec­om­mend­ed not to brave­ly endure pain, but to counter it with suit­able painkillers. Suit­able here means that the amount and dosage must not exceed a cer­tain lev­el and only drugs that have a com­ple­men­tary effect should be com­bined. If the usu­al painkillers avail­able in the phar­ma­cy with­out a pre­scrip­tion in the approved dos­es do not help you ade­quate­ly in some sit­u­a­tions, a stronger, pre­scrip­tion drug may be indi­cat­ed. Talk to your treat­ing doc­tors about it. In some sit­u­a­tions it can also be use­ful to present your­self to a pain cen­ter in order to receive an indi­vid­ual ther­a­py plan there.

Diet change / nutri­tion­al advice

First of all, it should be empha­sized that there is still no sci­en­tif­ic evi­dence for the effec­tive­ness of a cer­tain “endometrio­sis diet” in the field of nutri­tion. Some stud­ies also con­tra­dict each oth­er and so can
no gen­er­al or absolute rec­om­men­da­tion can be made. How­ev­er, many women report that a diet change tai­lored to them has done them good.

In par­tic­u­lar, endometrio­sis-asso­ci­at­ed intesti­nal com­plaints (the so-called endo-bel­ly) can be alle­vi­at­ed with the right diet. In this regard, it can help to reduce gluten and sug­ar as well as dairy prod­ucts or to try to omit these foods alto­geth­er. Pro­bi­otics can also help sup­port the intesti­nal flo­ra and reduce intesti­nal problems.

The few stud­ies that are now avail­able regard­ing a link between diet and endometrio­sis risk sug­gest that con­sum­ing plen­ty of fresh (prefer­ably green) veg­eta­bles, omega‑3 fat­ty acids, soy prod­ucts, and dairy prod­ucts that are high in cal­ci­um and vit­a­min D reduce the risk . In con­trast, sat­u­rat­ed fat, red meat, and alco­hol seem to increase the risk of endometrio­sis. There are con­tra­dict­ing data regard­ing fruit and cof­fee, so that no clear rec­om­men­da­tion can be made in this regard. There are also stud­ies that have shown that antiox­i­dant vit­a­mins (vit­a­mins A, C and E), vit­a­min B, as well as zinc and folic acid appear to reduce the risk. High-dose vit­a­min D has also been shown in stud­ies to have a ben­e­fi­cial effect on endometrio­sis. In one study, sub­sti­tut­ing fish oil also reduced the risk of endometrio­sis. The fact that green tea extract has a reduc­ing effect on endome­tri­al lesions has so far only been shown in ani­mal exper­i­ments, but it can be used on a tri­al basis.

Some patients react to the inges­tion of his­t­a­mine-con­tain­ing foods with increased intesti­nal dis­com­fort or even increased pain; here, too, it is worth research­ing whether there is a con­nec­tion here.

It is impor­tant for your­self to find out what is good for you and what foods are mak­ing the symp­toms worse. Here it is advis­able to keep a “com­plaint diary” and to record exact­ly what you do and when
eat­en and how you felt that day. If you give it a try and want to elim­i­nate cer­tain foods from the menu entire­ly, it makes sense not to omit sev­er­al foods at once. If you feel bet­ter, it is some­times unclear which food to leave out
the improve­ment is due.

Stay curi­ous about your indi­vid­ual path and try to change your diet step by step. And if your crav­ings are too big, treat your­self to your favorite dish with plea­sure. It does not help if the enjoy­ment of eat­ing and thus the qual­i­ty of life decrease due to remorse.

How­ev­er, the women’s expe­ri­ence shows how much influ­ence can be exert­ed (report Anna Lena Wilken with her book: As a rule, I am strong). That is why we con­sid­er this top­ic to be very impor­tant and are cur­rent­ly in the process of launch­ing research projects in this area as well.

Men­tal Well­be­ing — Psy­cho­so­mat­ic Imag­i­na­tion or
Psy­chother­a­py

Stud­ies have shown that the men­tal state can have a great influ­ence on the per­cep­tion of pain. So we know that peo­ple with depres­sion have a sig­nif­i­cant­ly increased pain per­cep­tion. On the oth­er hand, in the case of endometrio­sis, the dis­ease itself can lead to depres­sive moods. If patients walk from doc­tor to doc­tor for many years with­out being helped or their social life is impaired as a result of the pain, psy­cho­log­i­cal dis­tress is often a typ­i­cal side effect or even becomes the lead­ing symp­tom. We were able to con­firm this with our pre­vi­ous patients. In a master’s the­sis by a psy­chol­o­gy stu­dent, we were able to prove that the longer the pain dura­tion, the greater the risk of depres­sion. To break this vicious cir­cle, psy­cho­so­mat­ic or psy­cho­log­i­cal ther­a­py can be use­ful. This can also help to accept that one suf­fers from a chron­ic ill­ness and to devel­op cop­ing strategies.

The men­tal health of our patients is very impor­tant to us, so we are very hap­py that we can offer a com­pre­hen­sive research project at the Char­ité; if nec­es­sary, the doc­tor will speak to you about par­tic­i­pat­ing in the study.

For exam­ple, we would like to inves­ti­gate the con­nec­tion between hor­mone intake and the occur­rence of depres­sion, but on the oth­er hand we would also like to con­duct struc­tured inter­views in order to gain bet­ter knowl­edge of the respec­tive sit­u­a­tion. There is def­i­nite­ly too lit­tle research here, we want to change that.

It is also impor­tant to men­tion that there are many patients whose rela­tion­ships are bur­dened by their chron­ic ill­ness. Sex life can also be impaired by the pain that is typ­i­cal of endometrio­sis dur­ing sex­u­al inter­course (dys­pare­u­nia). So don’t be afraid to con­sid­er sex or cou­ples ther­a­py. Here, too, we have a very empa­thet­ic col­league who is there for you and your part­ner (if you are inter­est­ed, ask for an appoint­ment with Ms. Nicole Gehrmann, gyne­col­o­gist and sex ther­a­pist at the Char­ité women’s clinic).

Phys­io­ther­a­py, exer­cise and sports

aThe fact that phys­i­cal activ­i­ty and sport have a pos­i­tive effect on the body and soul has been well researched. As already described above, the psy­che has an impor­tant influ­ence on how we per­ceive pain. So-called endor­phins are released dur­ing phys­i­cal activ­i­ty and lift the mood — an endoge­nous method to increase psy­cho­log­i­cal well-being. In the case of chron­ic pain, those affect­ed often take a gen­tle pos­ture, which in turn inde­pen­dent­ly strength­ens the pain cir­cu­la­tion. In endometrio­sis patients, this reliev­ing pos­ture and ten­sion often affects the pelvic floor. Phys­i­cal exer­cise helps pre­vent or relieve cramps. At the same time, mus­cles are built up, stress relieved and the immune sys­tem strength­ened — this also increas­es well-being. It is now up to you to find out which sport is good for you and which should be inte­grat­ed per­ma­nent­ly into your every­day life. In addi­tion to mus­cle build­ing, tar­get­ed pelvic floor relax­ation is also important.

Yoga or Pilates helps many women, but aqua sports, run­ning or hik­ing in the fresh air are also rec­om­mend­ed. Many also ben­e­fit from pelvic floor exercises.

Phys­io­ther­a­py can also be very help­ful for spe­cial prob­lems or ques­tions. In addi­tion to exer­cis­es for strength­en­ing, stretch­ing and releas­ing cramps, the tech­nique of tran­scu­ta­neous elec­tro-nerve stim­u­la­tion with biofeed­back (TENS) is avail­able. Low-fre­quen­cy cur­rent impuls­es are used here, which are intend­ed to reduce the sen­si­tiv­i­ty to pain. Some health insur­ers take on this ther­a­py — even if con­clu­sive sci­en­tif­ic proof of its effec­tive­ness is (still) lacking.

Com­ple­men­tary treat­ments — osteopa­thy and tra­di­tion­al
chi­nese ther­a­py with acupuncture.

Some patients have good expe­ri­ences with TCM (Tra­di­tion­al Chi­nese Med­i­cine) and its impor­tant pil­lar of acupunc­ture. Even if there is often a lack of sci­en­tif­ic evi­dence of effec­tive­ness, these ther­a­pies can sup­port and accom­pa­ny the med­ical treat­ment approach. It is impor­tant to find a ther­a­pist to whom you can feel good access and feel comfortable.

Osteopa­thy

Per­sis­tent pain often leads to poor pos­ture of the entire mus­cu­loskele­tal sys­tem. There­fore a holis­tic treat­ment is nec­es­sary here. In our eyes, osteopa­thy is an impor­tant aspect, because spe­cif­ic man­u­al treat­ment releas­es mus­cles and fas­ci­ae again, there­by reliev­ing mis­align­ments — espe­cial­ly of the ileosacral joint. At the same time, the upper shoul­der gir­dle and diaphragm can also be affect­ed. Some health insur­ers make addi­tion­al pay­ments here, so this form of treat­ment should def­i­nite­ly be integrated.

Stress reduc­tion and “home remedies”

As described above, men­tal well­be­ing is an impor­tant approach to lead­ing a hap­py life with and despite endometrio­sis. Tak­ing care of your­self and tak­ing time for your­self are steps that are a key to more inner bal­ance, even with­out endometrio­sis. Even if stress can nev­er be com­plete­ly avoid­ed in our packed every­day life, one should con­scious­ly take time out and reduce stress as much as possible.

Well-known “home reme­dies” that many patients already use on a reg­u­lar basis can also be help­ful against pain. By apply­ing heat to the painful areas or tak­ing a warm bath in the tub, many women expe­ri­ence notice­able relief from acute com­plaints. With them, warmth has a relax­ing, calm­ing and anti­spas­mod­ic effect. Med­i­ta­tion, auto­genic train­ing or pro­gres­sive mus­cle relax­ation can also have this effect.

Ther­a­py pil­lar 2: oper­a­tive therapy

In our cen­ter we have already cared for more than 15,000 endometrio­sis patients accord­ing to our phi­los­o­phy and expe­ri­ence. As already described in the diag­nos­tic sec­tion, no oper­a­tion for pure diag­no­sis needs to be per­formed, but it can of course also be use­ful in indi­vid­ual cas­es and must be dis­cussed indi­vid­u­al­ly. For exam­ple, in some coun­tries, his­to­log­i­cal con­fir­ma­tion of endometrio­sis is manda­to­ry before fer­til­i­ty treat­ment can be ini­ti­at­ed (Aus­tria). Or on your part there is a desire for a defin­i­tive clar­i­fi­ca­tion. The diag­no­sis of a rel­e­vant endometrio­sis can usu­al­ly be made through an expe­ri­enced exam­i­na­tion sole­ly through the analy­sis of your symp­toms and the clin­i­cal examination.

If there is no cur­rent desire to have chil­dren and there is no evi­dence of organ destruc­tion, con­ser­v­a­tive hor­mon­al ther­a­py can be car­ried out first; if the symp­toms per­sist, one can wait and see. How­ev­er, if the symp­toms per­sist under hor­mon­al ther­a­py, then peri­toneum foci are like­ly and sur­gi­cal removal of these makes sense. For this deci­sion, how­ev­er, it is impor­tant to have been bleed­ing-free for at least 3 months under hor­mon­al ther­a­py; if you had bleed­ing under hor­mon­al ther­a­py, this is usu­al­ly asso­ci­at­ed with symp­toms, then that is it
under­stand­able because this pain is caused by the uterus.

Your doc­tor should rec­om­mend surgery if:

  1. the clin­i­cal exam­i­na­tion shows evi­dence of deeply infil­trat­ing endometrio­sis with severe symp­toms or the risk of per­ma­nent organ dam­age. An exam­ple of this is a con­ges­tion of the ureters or kid­neys. This can occur on one or both sides and caus­es the kid­ney to lose its func­tion over a long peri­od of time.
  2. Con­ser­v­a­tive (non-sur­gi­cal) ther­a­py has not led to suf­fi­cient symp­tom improvement.
  3. On your part, there is an urgent need for his­to­log­i­cal con­fir­ma­tion of the diag­no­sis. How­ev­er, the diag­no­sis of a rel­e­vant endometrio­sis is usu­al­ly only pos­si­ble through the analy­sis of yours
    Com­plaints and the clin­i­cal exam­i­na­tion and does not require any his­to­log­i­cal confirmation.
  4. You have not become preg­nant for more than a year despite hav­ing reg­u­lar sex­u­al inter­course. How­ev­er, before tak­ing any fur­ther steps, you should first be pre­sent­ed to a fer­til­i­ty cen­ter, in par­tic­u­lar to rule out male caus­es of sterility.

What about pain relief? Isn’t that also an indi­ca­tion for surgery? Yes, of course, but a holis­tic con­cept should be pur­sued; This means, among oth­er things, as few oper­a­tions as pos­si­ble and if oper­a­tions, then as effec­tive­ly as pos­si­ble. Unfor­tu­nate­ly, because the pain asso­ci­at­ed with endometrio­sis is com­plex, surgery can­not always remove all pain. In the past, a lack of analy­sis of the com­plaints and pain has led to many women hav­ing mul­ti­ple oper­a­tions, some of which were unsuc­cess­ful. The rea­sons for an oper­a­tion must there­fore be care­ful­ly con­sid­ered. It should be not­ed at this point that only about half of the patients are symp­tom-free after sur­gi­cal endometrio­sis removal.

For women who have not yet com­plet­ed fam­i­ly plan­ning, the top pri­or­i­ty is organ preser­va­tion. This explains, how­ev­er, that not all endome­tri­al foci can always be com­plete­ly removed, e.g. if the uterus itself is affect­ed (ade­no­myosis uteri) or if the ovaries are affect­ed. This can there­fore con­tin­ue to be the cause of pain.

In addi­tion, recur­ring pain can lead to chron­ic pain over a longer peri­od of time, which can lead to sec­ondary pelvic floor changes and must be treat­ed with mul­ti­modal ther­a­py
should be. Fur­ther oper­a­tions tend to lead to a wors­en­ing of the pain.

If endome­tri­al foci are in the area of ​​the uterus, some women with very severe symp­toms con­sid­er an oper­a­tion to remove the uterus (hys­terec­to­my). The foci that are adja­cent to the uterus can also be removed. Women usu­al­ly only con­sid­er hys­terec­to­my if the endometrio­sis has severe­ly restrict­ed their lives, oth­er treat­ments have not been suc­cess­ful, and they are sure that they no longer want to have a child. A woman’s age also plays an impor­tant role in deter­min­ing whether or not to have the uterus removed. In addi­tion, an oper­a­tion only makes sense if the results of the exam­i­na­tion actu­al­ly sug­gest an improve­ment in the symp­toms. Usu­al­ly, when the uterus is removed, the ovaries are left in place in order to keep the hor­mones produced.

How­ev­er, hys­terec­to­my alone does not guar­an­tee that the endometrio­sis will be cured after­wards. As long as the ovaries are still func­tion­al­ly active and pro­duc­ing estro­gen, endome­tri­al foci in oth­er loca­tions con­tin­ue to be stim­u­lat­ed and can cause dis­com­fort. Remov­ing the ovaries stops the pro­duc­tion of female sex hor­mones (arti­fi­cial menopause), there­by stim­u­lat­ing the endome­tri­al foci. After this oper­a­tion, some women have such severe gen­er­al symp­toms due to the dis­con­tin­u­a­tion of the hor­mones that they want hor­mone treat­ment with estro­gen. Then it may be that the hor­mone prepa­ra­tions trig­ger endometrio­sis symp­toms again. Removal of the ovaries is there­fore gen­er­al­ly con­sid­ered from the age of 45 at the ear­li­est, also in order to keep pos­si­ble long-term side effects (increased risk of osteo­poro­sis, increased risk of heart attacks) as low as possible.

OP time

Regard­ing the time of oper­a­tion in the cycle, there is no com­plete­ly uni­form recommendation.

If you are cur­rent­ly tak­ing hor­mon­al ther­a­py, we rec­om­mend paus­ing it and only per­form­ing the oper­a­tion after at least two men­stru­al peri­ods. Accord­ing to Köh­ler et al. (https://www.ncbi.nlm.nih.gov/pubmed/19819448) the hor­mon­al ther­a­py results in down­stag­ing and inac­ti­va­tion of the endome­tri­al foci, which can no longer be seen so clear­ly dur­ing the oper­a­tion and can there­fore be over­looked more often the oper­a­tion may not be a com­plete removal of the endometriosis.

In the case of a clar­i­fi­ca­tion about the desire to have chil­dren, we also rec­om­mend per­form­ing the oper­a­tion between the 1st and 10th day of the cycle, espe­cial­ly if the oper­a­tion is com­bined with a diag­nos­tic uter­ine spec­i­men and a paten­cy check of the fal­lop­i­an tubes (chro­mop­er­tu­ba­tion). At this point, the vis­i­bil­i­ty in the uterus is bet­ter if the mucous mem­brane is only slight­ly built up. In addi­tion, a preg­nan­cy may the­o­ret­i­cal­ly have occurred in the sec­ond half of the cycle after ovu­la­tion, which is not yet detect­ed by a reg­u­lar urine preg­nan­cy test.

In the case of endometrio­sis ren­o­va­tions, this can also be devi­at­ed from, since endometrio­sis foci can be dis­played par­tic­u­lar­ly well, espe­cial­ly short­ly before the bleed­ing, both in the uter­ine spec­i­men and in the laparo­scop­ic examination.

Prepa­ra­tion for surgery

If the joint deci­sion on an oper­a­tion has been made and an appoint­ment has been made, fur­ther prepara­to­ry mea­sures must be car­ried out before­hand. This includes the oper­a­tion brief­ing, in which your doc­tor explains the gen­er­al pro­ce­dure of the oper­a­tion and both the gen­er­al and spe­cif­ic risks.

How exact­ly does the pro­ce­dure work? Can there be side effects or com­pli­ca­tions? The oper­at­ing doc­tor will clar­i­fy these and oth­er impor­tant ques­tions with you in an ini­tial dis­cus­sion. After­care and rehab are also discussed.

The anes­thetist will then pro­vide infor­ma­tion. The var­i­ous forms of anes­the­sia, their process and risks and, if nec­es­sary, spe­cial pain ther­a­pies are dis­cussed. Depend­ing on the pre­vi­ous ill­ness­es or pre­vi­ous oper­a­tions, the anes­thetist rec­om­mends fur­ther exam­i­na­tions, for exam­ple to ensure the func­tion­al­i­ty of the heart and lungs.

When a blood sam­ple is tak­en, not only the reg­u­lar blood count, but also kid­ney val­ues ​​and coag­u­la­tion are checked. The val­ue CA 125 is not suit­able as an activ­i­ty mark­er for endometrio­sis, as this is a non-spe­cif­ic val­ue, which is increased in dis­eases of the peri­toneum or ovary, includ­ing peri­toni­tis or ovar­i­an diseases.

If an oper­a­tion involv­ing the bow­el is planned, your doc­tor will give you rec­om­men­da­tions on lax­a­tive mea­sures before the oper­a­tion. It should be empha­sized here that if a com­plex endometrio­sis oper­a­tion is planned even with par­tial bow­el resec­tion, it is advis­able to con­sid­er local pain ther­a­py (epidur­al anes­the­sia) for post­op­er­a­tive pain con­trol. Painkillers can then be giv­en on top of it and we have to give less all over the body, which in turn has side effects. This may sound a bit scary at first, but it is usu­al­ly a great advan­tage and is also rec­om­mend­ed by us gynecologists.

We ask you to pay spe­cial atten­tion to your per­son­al hygiene on the day or in the morn­ing before the oper­a­tion, includ­ing clean­ing the navel, espe­cial­ly if you have a laparoscopy.

OP process

For a planned oper­a­tion, it is advis­able to be sober. This means that at least six hours should have elapsed between the last time you had food and drink and the oper­a­tion. This also includes chew­ing gum and smok­ing. Clear drinks such as water or tea with­out addi­tives are pos­si­ble in small quan­ti­ties up to two hours before an oper­a­tion. These strict rules serve to pro­tect you from so-called aspi­ra­tion pneu­mo­nia! The stom­ach con­tents with stom­ach acid run up the esoph­a­gus into the lungs and can lead to severe pneu­mo­nia there. In the case of planned, so-called elec­tive inter­ven­tions, we do not want to take this risk for you and insist on the fast­ing times men­tioned above.

After you have been called by the OR team, you will be brought to the OR by the nurs­ing staff or a ser­vice team. The anes­thetist will usu­al­ly meet you there. Depend­ing on the activ­i­ty, your doc­tor will try again to answer any ques­tions you may have.

An endometrio­sis oper­a­tion is usu­al­ly car­ried out by laparoscopy, ie. Min­i­mal­ly inva­sive. Endometrio­sis san­i­ta­tion can take from 20 min­utes to sev­er­al hours, depend­ing on the extent. With a laparoscopy, one usu­al­ly goes into the abdomen via the navel and then pumps car­bon diox­ide into the abdomen so that the abdom­i­nal wall is lift­ed from the organs and the work­ing tro­car sleeves can then be insert­ed into the nec­es­sary posi­tions in the low­er abdomen with sig­nif­i­cant­ly reduced risk. Usu­al­ly these are two to three approx. 1 cm long inci­sions on the left, cen­ter and right in the low­er abdomen. If you have already had sev­er­al pre­vi­ous oper­a­tions, it may be a safe option to insert the first tro­car on the left side below the costal arch in order to insert the cam­era from there and remove any adhe­sions from pre­vi­ous oper­a­tions in the area of ​​the navel under sight and then car­ry out the oper­a­tions as usual .

Dur­ing a laparoscopy, all abdom­i­nal organs are shown, includ­ing the diaphragm, liv­er, spleen, stom­ach, intestines and appen­dix. Only then do you inspect the female organs in the pelvis. Dur­ing a laparoscopy, pho­to doc­u­men­ta­tion can usu­al­ly be pro­vid­ed so that the find­ings and sur­gi­cal steps can be demon­strat­ed to you after an operation.

Very rarely, usu­al­ly only in an emer­gency sit­u­a­tion, it is nec­es­sary to oper­ate through an abdom­i­nal inci­sion for endometrio­sis reha­bil­i­ta­tion. This can then be done either across the low­er abdomen over approx. 10 cm or length­ways from the pubic bone to the navel, very rarely beyond.

If part of the intes­tine has to be removed, the affect­ed part is usu­al­ly cut out and the healthy ends sewn back togeth­er (anas­to­mo­sis). Most intesti­nal endometrio­sis lie in the area of ​​the rec­tum, which has a reser­voir func­tion until the stim­u­lus to defe­cate occurs. This intesti­nal area must there­fore be able to tol­er­ate large changes in vol­ume. A suture in par­tial resec­tions in the area of ​​the rec­tum is there­fore exposed to extreme­ly high stress­es due to recur­ring stretch­ing of the intesti­nal wall. There­fore it can some­times be nec­es­sary to cre­ate a (tem­po­rary) arti­fi­cial anus. A piece of the small intes­tine is sewn to the abdom­i­nal wall so that the stool con­tents can flow away well above the suture in the rec­tum. In this way, the anas­to­mo­sis can heal in peace with­out stretch­ing stim­uli and the arti­fi­cial anus can be moved back after a few weeks. A per­ma­nent arti­fi­cial anus is only very rarely required.

If endome­tri­al foci occur in the area out­side the small pelvis dur­ing the oper­a­tion, your doc­tor may call in sur­geons from oth­er spe­cial­ist depart­ments for the oper­a­tion so that the gen­er­al sur­geon may be involved in the bow­el or the urol­o­gist may oper­ate on endometrio­sis of the ureter. How­ev­er, depend­ing on the train­ing of your gyne­col­o­gist, sim­pler inter­ven­tions can also be car­ried out with­out the help of oth­er spe­cial­ist departments.

Objec­tives of the operation:

  1. Con­fir­ma­tion of the diag­no­sis (through his­to­log­i­cal analysis)
  2. Deter­mi­na­tion of the spread of endometriosis
  3. Reduc­tion of com­plaints through max­i­mum endometrio­sis reha­bil­i­ta­tion, pos­si­bly with remain­ing find­ings depend­ing on the agree­ment made before the oper­a­tion (uterus with ade­no­myosis uteri and incom­plete fam­i­ly plan­ning, slight intesti­nal involve­ment with­out com­plaints to avoid bow­el surgery, …)

After the operation

After the oper­a­tion you will first spend a few hours in the recov­ery room, where you will be asked whether you are in pain and will be giv­en addi­tion­al pain med­ica­tion if nec­es­sary. Nor­mal­ly, you will be trans­ferred from the recov­ery room to the nor­mal hos­pi­tal ward, where you will con­tin­ue to be looked after. Depend­ing on the time of the oper­a­tion and the rest of the oper­a­tion pro­gram of the day, your doc­tor will talk to you about your find­ings and the course of the oper­a­tions on the day of the oper­a­tion or the fol­low­ing day at the lat­est. In addi­tion, will your doc­tor be able to give you indi­vid­u­al­ized rec­om­men­da­tions on how to proceed?

Check­list ques­tions to ask my doctor:

● Do I even have endometrio­sis?
● How wide­spread was my dis­ease?
● What oth­er treat­ment options can I con­sid­er?
● What are their advan­tages or dis­ad­van­tages?
● Would you rec­om­mend fur­ther treat­ments?
● Am I enti­tled to fol­low-up treat­ment (AHB)?
● When should I next intro­duce myself to you?

Depend­ing on the extent of the oper­a­tion, you will spend between 1 and 5 nights in the hos­pi­tal after the oper­a­tion. The uri­nary catheter can usu­al­ly be removed after get­ting up for the first time, occa­sion­al­ly in the evening of the oper­a­tion, usu­al­ly the next morn­ing. If a par­tial blad­der resec­tion was per­formed dur­ing your oper­a­tion, the catheter usu­al­ly has to remain in place for 7 to 10 days so that the blad­der wound can heal undisturbed.

Since the nerve plexus­es of the blad­der are occa­sion­al­ly shown dur­ing the oper­a­tion, we check whether they can uri­nate well after the oper­a­tion. This can some­times lead to dis­rup­tions, so that spe­cial train­ing is required here. It is then nec­es­sary to keep calm, the nerve sup­ply is usu­al­ly only irri­tat­ed and needs a few days to a few weeks to regen­er­ate. To do this, we usu­al­ly insert a uri­nary catheter again, and occa­sion­al­ly we sup­port this phase with spe­cial medication.

Dur­ing the inpa­tient stay, the social ser­vices should intro­duce them­selves to you to talk to you about reha­bil­i­ta­tion mea­sures or fol­low-up treat­ment. There are cer­tain insti­tu­tions that spe­cial­ize in endometrio­sis. You are wel­come to refer to the
web­site of the Ger­man Endometrio­sis Asso­ci­a­tion before the interview.

Ther­a­py pil­lar 3: drug therapy

Treat­ment with med­ica­tion is pri­mar­i­ly aimed at reliev­ing or elim­i­nat­ing severe pain or cramp­ing asso­ci­at­ed with men­stru­a­tion. Painkillers and hor­mon­al agents that sup­press ovu­la­tion (hor­mon­al down­reg­u­la­tion) are avail­able for this pur­pose. In the case of recur­ring but not extreme­ly stress­ful abdom­i­nal com­plaints, painkillers or gesta­gens in the form of mono- or com­bined prepa­ra­tions can pro­vide notice­able relief. These prepa­ra­tions are often very well tol­er­at­ed and are there­fore usu­al­ly also suit­able for young women with endometrio­sis. If they don’t bring enough relief, stronger med­ica­tions are an option.

Painkiller

Painkillers from the group of so-called non-steroidal anti-inflam­ma­to­ry drugs (NSAIDs) are often used to treat men­stru­al symp­toms, but also for endometrio­sis. These reduce the free­ing of
pain mes­sen­gers. These include, for exam­ple, the active ingre­di­ents ibupro­fen, diclofenac and parac­eta­mol. Some of these drugs are avail­able over-the-counter, oth­ers are only avail­able on pre­scrip­tion in high­er dos­es. Novla­gin and Metami­zol are also suitable.

NSAIDs can effec­tive­ly relieve severe men­stru­al pain and are usu­al­ly well tol­er­at­ed as long as the pain is acute. At first, clin­i­cal expe­ri­ence shows that they can help with peri­od pain quite effec­tive­ly. But there are few stud­ies that inves­ti­gate its effec­tive­ness for oth­er pain caused by endometrio­sis. These drugs can cause side effects such as stom­ach upset, nau­sea, and headache. With­out med­ical advice, painkillers should there­fore not be tak­en fre­quent­ly or for a long time.

Over time, how­ev­er, these drugs can lose their effec­tive­ness, women have to take more and more painkillers, and this is where chroni­fi­ca­tion mech­a­nisms come into play or a pro­gres­sion of the endome­tri­al lesions.

Peri­od pain that can­not be treat­ed well with 1–2 ibupro­fen 600 mg, so that there is no inabil­i­ty to work and / or bedrid­den, should be fur­ther clarified.

Some col­leagues rec­om­mend so-called opi­oids to treat severe pain. These reme­dies imi­tate the effects of the body’s own pain-reliev­ing sub­stances and influ­ence how pain is felt in the brain. Opi­oids may only be used if pre­scribed by a doc­tor. Espe­cial­ly with the more effec­tive opi­oids, there is a risk of depen­dence with pro­longed use. Side effects such as nau­sea and vom­it­ing, con­sti­pa­tion, tired­ness, dizzi­ness and fluc­tu­a­tions in blood pres­sure can occur. No reli­able data are avail­able yet on the effect of these painkillers in endometrio­sis and are not indi­cat­ed unless this is done under the care of very expe­ri­enced endometrio­sis spe­cial­ists and pain ther­a­pists
is tak­en.

Hor­mon­al treatments

Hor­mon­al active ingre­di­ents sup­press the body’s own hor­mone pro­duc­tion in the ovaries and thus also ovu­la­tion and men­stru­al bleed­ing. They are not suit­able for women try­ing to get pregnant.

It is impor­tant to us that you under­stand the process­es in the hor­mon­al cycle in order to under­stand the effect of the body’s own hor­mone pro­duc­tion on endometrio­sis and also the effect of hor­mone ther­a­py on endometrio­sis. It is impor­tant that you make your own per­son­al opin­ion with regard to the risk / ben­e­fit assess­ment
can. We are con­cerned with your qual­i­ty of life, tak­ing into account the aspects of untreat­ed endometriosis.

A cur­rent trend is that hor­mones have more dis­ad­van­tages than advan­tages and this may well be jus­ti­fied for women with­out hor­mone-depen­dent dis­eases such as endometrio­sis. In case of a
endometrio­sis treat­ment there is a med­ical indication.

We have the prob­lem that:

  1. Untreat­ed endometrio­sis pain is often extreme­ly severe, which can hard­ly be man­aged with mul­ti­modal ther­a­pies and, if these are treat­ed inef­fec­tive­ly, more and more lead to chron­ic pain, which in turn caus­es sec­ondary changes such as pelvic floor dys­func­tion and increas­ing pelvic pain, such as pain dur­ing inter­course, uri­na­tion and defecation
  2. Endometrio­sis can progress dur­ing the nor­mal cycle; if organs are not yet dam­aged, this can be asso­ci­at­ed with pos­si­ble dam­age to fer­til­i­ty over the course of years
  3. Even after endometrio­sis has been sur­gi­cal­ly removed, this dis­ease has a strong ten­den­cy to recur (10% / year for peri­toneum foci; 30% for cysts); this is also sig­nif­i­cant­ly reduced when hor­mon­al is ini­ti­at­ed
    Long-term ther­a­py, espe­cial­ly impor­tant if there were cysts and an oper­a­tion has already been car­ried out on the ovary. Fur­ther dam­age to organs due to the occur­rence of new cysts should be avoid­ed here,
    until the desire to have chil­dren could be imple­ment­ed. Too lit­tle atten­tion is paid to this, even after a sin­gle oper­a­tion on the ovary there can be irrepara­ble dam­age. Or a devel­op­ing ade­no­myosis can strong­ly influ­ence the chances of preg­nan­cy and also the preg­nan­cy complications.

From our point of view, these are unfor­tu­nate­ly seri­ous rea­sons to treat endometriosis.

On the oth­er hand, there are side effects

Many women com­plain of spot­ting, espe­cial­ly with the well-known progesto­gen-only prepa­ra­tion “Dienogest”. These are often asso­ci­at­ed with pain. This is not in itself a side effect, but an inef­fec­tive effect, because then your ovaries are stronger than the prog­estin. They can­not be “put to sleep”, so to speak, and the hor­mon­al down­reg­u­la­tion is inad­e­quate, the ovary is active, forms fol­li­cles which then also form estro­gens, the mucous mem­brane in the uterus builds up a lit­tle and there is bleed­ing. This can be seen by using the ultra­sound to look for func­tion­al signs on the ovaries and the thick­ness of the mucous mem­brane in the uterus. In this case it makes sense to increase the dose (1–0‑1), or if the bleed­ing does not stop after 7 days, take a break of 7 days so that the mucous mem­brane can bleed off. Then it starts again. If this is the case, it is under­stand­ably not nice and also not use­ful and so not med­ical­ly con­sid­ered. So the longer you try, the more like­ly this bleed­ing will stop. Ulti­mate­ly, the goal is to be bleed­ing-free. The effec­tive­ness of the drug on endometrio­sis can only be checked if one is bleeding-free.

Now we come to the real side effects, these can be prog­estin-relat­ed side effects, we all know how we feel before our days, even if the nat­ur­al prog­estin pre­dom­i­nates in the body: impure skin, mood swings up to depres­sion, water reten­tion, breast jokes, you have to weigh up for your­self, you should­n’t stop tak­ing the med­ica­tion too hasti­ly, this usu­al­ly ends after 3–4 months for many patients. If the side effects out­weigh the ben­e­fits, we can look for oth­er gesta­gens that are bet­ter tol­er­at­ed. In Ger­many only the “Dienogest” is approved for the treat­ment of endometrio­sis, which means that it is paid for by the health insur­ance com­pa­ny, oth­ers are not and are then avail­able as off-label use.

In prin­ci­ple, you can also take com­bined prepa­ra­tions such as the pill, which then try ethinylestra­di­ol and dienogest (in the same dosage as dienogest mono). Here, the tol­er­ance is in some cas­es sig­nif­i­cant­ly bet­ter, but on the oth­er hand there is the estro­gen con­tent in the prepa­ra­tion, which we do not real­ly know in the long term whether it also has a growth effect on endometrio­sis cells. There­fore, prog­estin monother­a­py is cur­rent­ly to be regard­ed as the first choice when ini­ti­at­ing hor­mone ther­a­py and then oth­er prepa­ra­tions as the sec­ond choice.

Most impor­tant to us, how­ev­er, is your qual­i­ty of life. So if hor­mones (sys­tem­i­cal­ly, i.e. as a tablet) are not tol­er­at­ed, it is dif­fi­cult, but there are ways here too. That must then be clar­i­fied indi­vid­u­al­ly. But first of all it is impor­tant that you under­stand the prin­ci­ple and thus find your own atti­tude towards it.

Then you can, for exam­ple, con­sid­er a local hor­mon­al ther­a­py with a prog­estin-con­tain­ing IUD (LNG IUD). This is placed in the uterus. It releas­es the hor­mone local­ly, it only pass­es into the blood to a very small extent (it can be detect­ed in the blood, but the con­cen­tra­tion is not high enough to influ­ence the cycle, i.e. the cycle per­sists). Many women who suf­fer from sys­temic hor­mon­al ther­a­pies, espe­cial­ly depres­sion, cope much bet­ter with the IUD. Excep­tions prove the rule, but it’s def­i­nite­ly worth a try !!!

The avail­able stud­ies on endometrio­sis are lim­it­ed. The LnG-con­tain­ing IUD is approved for the pres­ence of hyper­me­n­or­rhea (very heavy men­stru­al bleed­ing) and this is what many women with ade­no­myosis uteri have and there­fore this can also bring about a very good improve­ment in this regard. The effect is main­ly local, so men­stru­al pain is often much bet­ter, so it has lit­tle or no effect on severe endometrio­sis in the abdom­i­nal cavity.

The LNG coil is also used as a con­tra­cep­tive; Pos­si­ble side effects such as inter­men­stru­al bleed­ing, pelvic prob­lems, acne and breast ten­der­ness are known from this appli­ca­tion. This shows that it pass­es into the blood to a small extent and that hor­mone-sen­si­tive women in par­tic­u­lar can react, but as I said, it is worth a try.

It is rare that the ovaries sim­ply can­not be down­reg­u­lat­ed; then, in the case of severe pain, there is only the option of cen­tral down­reg­u­la­tion with GnRh ana­logues (arti­fi­cial menopause). That sounds ter­ri­ble too, but unfor­tu­nate­ly it is still an effec­tive ther­a­py in such sit­u­a­tions. The drug itself does not actu­al­ly have any side effects, it is a repli­ca of the body’s own hor­mone. The admin­is­tra­tion (syringe) con­tin­u­ous­ly stim­u­lates the recep­tors and then the cycle comes to the switch­ing point of the hypo­thal­a­mus
suc­cumb, so that then real­ly no more stim­u­la­tion from the brain can take place. The side effects are basi­cal­ly what we want to achieve, name­ly a down­reg­u­la­tion of the ovaries, which no longer make a sound. The
lack of estro­gen leads to hot flash­es, sleep and con­cen­tra­tion dis­or­ders, all of which we can expect in the menopause, but not nec­es­sar­i­ly. It is the same with younger women, not all of them have such extreme side effects, that also depends on the fat store, for exam­ple, where estro­gens are also formed. In order to coun­ter­act the side effects, an add-back replace­ment ther­a­py is usu­al­ly added, that is a small dose of estro­gen / prog­es­terone, so that the treat­ment is tol­er­a­ble. Indeed there is
some patients who have expe­ri­enced sig­nif­i­cant pain relief and only thus were able to con­trol the pain and for whom long-term ther­a­py is even pos­si­ble. The most impor­tant thing here is also to con­sid­er bone den­si­ty. With­out add back HRT, GnRha may not be giv­en for more than a total of 12 months. There­fore we use the add back ther­a­py to counter pos­si­ble effects on the bone.

Watch & Wait

Hor­mon­al or sur­gi­cal ther­a­py does not always have to be ini­ti­at­ed imme­di­ate­ly if endometrio­sis is sus­pect­ed or if it has already been his­to­log­i­cal­ly con­firmed. It makes sense to wait and see if you are cur­rent­ly plan­ning to have chil­dren but have not yet tried to become preg­nant. While it is true that child­less­ness is an impor­tant issue in endometrio­sis. Nev­er­the­less, almost half of endometrio­sis patients become preg­nant spon­ta­neous­ly. Since there is usu­al­ly no men­stru­al bleed­ing dur­ing preg­nan­cy and also dur­ing the sub­se­quent breast­feed­ing peri­od, the symp­toms are often sig­nif­i­cant­ly alle­vi­at­ed by preg­nan­cy. So it makes per­fect sense to try whether it works with the spon­ta­neous preg­nan­cy. If after a year, despite reg­u­lar sex­u­al inter­course (at least 2 per week), preg­nan­cy has not occurred, an appoint­ment at a fer­til­i­ty cen­ter is rec­om­mend­ed and you should also talk to your doc­tor about endometrio­sis surgery. Even if you are only slight­ly dis­tressed despite endometrio­sis, you do not need to act imme­di­ate­ly. In this case, it may be suf­fi­cient to change one’s lifestyle in line with the mul­ti­modal ther­a­py con­cept. If you and your attend­ing physi­cian decide on an obser­va­tion­al con­cept, reg­u­lar med­ical check-ups are indicated.

Street clock showing 4:04 p.m. in a black and white photograph.

Re-intro­duc­tion

Depend­ing on the find­ings and the ther­a­py that has been decid­ed, a fol­low-up appoint­ment will be arranged with you. Since endometrio­sis is a chron­ic con­di­tion, it will stay with you until your menopause occurs. How often your doc­tors will call you for fol­low-up checks depends on your stage of ill­ness, the ther­a­py cho­sen and your plans and ideas. It often makes sense to present your­self for a check-up after three months, when a new ther­a­py con­cept has been estab­lished. In this way it can be found out whether the new ther­a­py will help you or whether there are appli­ca­tion prob­lems, for exam­ple. A short-term re-pre­sen­ta­tion is also rec­om­mend­ed after an oper­a­tion and sub­se­quent ther­a­py. If, on the oth­er hand, you have decid­ed to attempt a spon­ta­neous preg­nan­cy, you may not need to see you again until it does not occur spontaneously.

So every time you vis­it, ask your doc­tor exact­ly when he or she would like to see you next and make an appoint­ment as soon as possible.

Life and every­day life

Endometrio­sis is a dis­ease that can affect many impor­tant areas of life — from self-esteem as a woman to part­ner­ship, fam­i­ly and life planning.

In order to find a way to get the best qual­i­ty of life pos­si­ble despite the symp­toms, some deci­sions have to be made. Good infor­ma­tion helps here — about the type of ther­a­py and ways of orga­niz­ing your own life so that the symp­toms bur­den your every­day life as lit­tle as possible.

Good care and sup­port from a doc­tor with exten­sive expe­ri­ence in the diag­no­sis and treat­ment of endometrio­sis is impor­tant. Med­ical atten­dants should also be famil­iar with the phys­i­cal and psy­cho­log­i­cal stress­es and social effects of the dis­ease. It can be help­ful to get a sec­ond opin­ion when mak­ing dif­fi­cult deci­sions, such as for or against surgery.

In order to be able to deal with endometrio­sis and its pos­si­ble con­se­quences, good sup­port from fam­i­ly, part­ner or friends is valu­able. This pre­sup­pos­es that rel­a­tives are also informed about the dis­ease and have an under­stand­ing of the bur­dens that it brings with it. For some women, the exchange with oth­er affect­ed per­sons in a self-help group also means impor­tant sup­port. Oth­ers pre­fer to solve their prob­lems for them­selves. It is cru­cial that every woman finds her own way to deal
with the chron­ic disease

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