Image accompanying the article chronic endometriosis shows sketches of women and written information

Endometrio­sis — A chron­ic disease

Endometrio­sis is one of the most com­mon chron­ic dis­eases in sex­u­al­ly mature women, which caus­es extreme­ly severe pain, but is still under­es­ti­mat­ed — also in medicine.

A wide­spread disease

Endometrio­sis is prob­a­bly the most com­mon benign abdom­i­nal dis­ease in women. Experts expect up to 40,000 new cas­es per year in Ger­many alone. How­ev­er, only a frac­tion of the cas­es are known. The dis­ease often goes undi­ag­nosed. One of the main rea­sons is cer­tain­ly that, in addi­tion to the endometrio­sis-spe­cif­ic symp­toms, non-spe­cif­ic com­plaints can dis­tort the clear symp­toms, which means that not only gyne­col­o­gists but also doc­tors from oth­er dis­ci­plines are con­sult­ed by the women concerned.

Endometrio­sis can appear in var­i­ous anatom­i­cal forms

Endometri­um-like tis­sue can set­tle in a vari­ety of places in the abdomen. A dis­tinc­tion is made between forms of endometrio­sis accord­ing to their loca­tion and severity:

  • out­side the gen­i­tal organs (tech­ni­cal term: endometrio­sis gen­i­tal­is externa),
  • the dif­fuse and focal form of ade­no­myosis (tech­ni­cal term: endometrio­sis gen­i­tal­is interna),
  • Endometrio­sis that grows into oth­er organs, i.e. deeply infil­trat­ing (TIE for short),
  • as well as endometrio­sis foci on organs oth­er than the gen­i­tal organs (tech­ni­cal term: endometrio­sis extra­gen­i­tal­is), for exam­ple on the diaphragm or navel (can be both inside and out­side the abdomen).

Endometrio­sis and Adenomyosis

Endometrio­sis is a benign but chron­ic dis­ease in which tis­sue sim­i­lar to the lin­ing of the uterus grows out­side the uter­ine cav­i­ty — in the abdomen (peri­toneum), on the peri­toneum in the small pelvis, in the blad­der wall, in the ureters, on the intesti­nal walls and ovaries or even in the lungs . The name derives from the Greek word endometri­um for uter­ine lin­ing. In the mean­time, how­ev­er, it is known that this is not just tis­sue sim­i­lar to the lin­ing of the uterus (epithe­lial and stro­mal cells), but also smooth mus­cle cells that resem­ble the mus­cu­la­ture of the uterus. Orig­i­nal­ly, the med­ical term endometrio­sis (endometrio­sis out­side the uter­ine cav­i­ty) described endometrio­sis foci on the peri­toneum and in the gen­i­tal organs (endometrio­sis gen­i­tal­is exter­na). But now it also means the migra­tion of such foci into the uter­ine mus­cle wall (endometrio­sis gen­i­tal­is inter­na or ade­no­myosis uteri, ade­no­myosis for short).

It is impor­tant to know the sub­types of endometrio­sis in order to under­stand the full pic­ture of the dis­ease. Both (endometrio­sis and ade­no­myosis) belong togeth­er, which is why the entire clin­i­cal pic­ture should actu­al­ly be called archimet­ro­sis, since it starts in a part of the uterus (tech­ni­cal term: archime­tra). How­ev­er, not as much is known about ade­no­myosis as about endometrio­sis. One of the rea­sons for this is that the uterus is not usu­al­ly removed from young women, but rather a laparoscopy is used to deter­mine whether endometrio­sis can be seen. So the uterus is for­got­ten in most cas­es. With the intro­duc­tion of the “laparoscopy” sur­gi­cal tech­nique, the focus has been placed more on endometrio­sis than on ade­no­myosis. Thus, for many decades, research has only dealt with a part of the entire endometrio­sis disease.

The chron­ic dis­ease is char­ac­ter­ized by numer­ous symptoms

Since both ade­no­myosis and endometrio­sis are hor­mone-depen­dent dis­eases, the symp­toms or com­plaints ini­tial­ly occur cycli­cal­ly, i.e. most­ly accord­ing to a pat­tern that is always the same, for exam­ple always before, dur­ing or after the men­stru­al peri­od. The pat­terns are as indi­vid­ual as the patients and their dis­ease, which makes it dif­fi­cult to diag­nose endometrio­sis cor­rect­ly. In the fur­ther course of the dis­ease, the symp­toms can also appear acycli­cal­ly — this does not make the diag­no­sis any eas­i­er either. Typ­i­cal over­rid­ing symp­toms of both dis­eases include heavy bleed­ing, pain and infer­til­i­ty. The main symp­tom of endometrio­sis and ade­no­myosis is always painful men­stru­al bleed­ing, but unwant­ed child­less­ness, pain dur­ing sex­u­al inter­course or uri­na­tion and oth­er abdom­i­nal pain can also be indications.

Due to the com­plex­i­ty of the entire clin­i­cal pic­ture, the diag­no­sis and the treat­ment, many patients suf­fer from the numer­ous symp­toms and can­not be ade­quate­ly cared for due to a lack of com­pre­hen­sive exper­tise. In this case, cer­ti­fied endometrio­sis cen­ters or self-help groups can be sup­port­ive to share expe­ri­ences, prob­lems or life sit­u­a­tions. Below you will find an overview of the most impor­tant con­tact points for those affected.

Address­es that help affect­ed women:

Char­ité — Uni­ver­si­ty Med­i­cine Berlin

Augusten­burg­er Platz 1, 13353 Berlin | www.frauenklinik.charite.de
At the Char­ité Vir­chow Klinikum (CVK), Prof. Sylvia Mech­sner heads a cer­ti­fied Lev­el III endometrio­sis cen­ter. It is one of the largest endometrio­sis cen­ters in Ger­many, treat­ing more than 500 patients every year.

Endometrio­sis Research Foundation

Lange Straße 38, 26655 West­er­st­ede | www.endometriose-sef.de
The Endometrio­sis Research Foun­da­tion wants to improve knowl­edge about the dis­ease endometrio­sis in Ger­many and change the sit­u­a­tion for the ben­e­fit of the women affect­ed. The foun­da­tion works close­ly with the Euro­pean Endometrio­sis League and the Ger­man Endometrio­sis Asso­ci­a­tion. You can find the address­es of cer­ti­fied endometrio­sis reha­bil­i­ta­tion clin­ics on the Foundation’s website.

Euro­pean Endometrio­sis League

www.euroendometriosis.com bei Face­book: @europaeischeendometrioseliga
The Euro­pean Endometrio­sis League sup­ports research and rais­es pub­lic aware­ness of endometrio­sis in Euro­pean coun­tries. The aim is to improve aware­ness and treat­ment for women with endometriosis.

Endometrio­sis Asso­ci­a­tion Ger­many e.V.

Bern­hard-Göring-Str. 152, 04277 Leipzig | www.endometriose-vereinigung.de
The Self-Help Asso­ci­a­tion pro­vides endometrio­sis infor­ma­tion and sup­port, as well as free coun­sel­ing. Here you will also find a list of the address­es of spe­cial­ists, cer­ti­fied endometrio­sis cen­ters in Ger­many and oth­er con­tact points.

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