In Germany, near­ly every tenth per­son with a ute­rus is affec­ted by endo­me­trio­sis – but a lot of peop­le are hea­ring about the gyne­co­lo­gi­cal dise­a­se for the first time when they are get­ting dia­gno­sed. What is endo­me­trio­sis and how can it be treated? 

An Overview

By endo­me­trio­sis, tis­sue simi­lar to the lining of the ute­rus forms out­side the ute­ri­ne cavity.

This leads to deve­lo­p­ment of endo­me­trio­sis foci as well as inflamma­ti­on. Proliferations (cysts) on the ova­ries, in the abdo­men and pel­vic cavi­ty, on the intes­ti­nes or on the abdo­mi­nal peri­to­ne­um may deve­lop. Cysts are encap­su­la­ted hol­low spaces in tis­sue fil­led with tis­sue flu­id, blood and addi­tio­nal sebum or pus. The dise­a­se is chro­nic but benign. Occasionally, endo­me­trio­sis foci can grow on other tis­sue and cau­se per­ma­nent dama­ge to organs like the intes­ti­ne or the fallo­pian tubes. In excep­tio­nal cases, endo­me­trio­sis tis­sue can build up out­side the abdo­men, for examp­le in the lungs.

Particularly cha­rac­te­ris­tic, the dise­a­se may lead to estab­lish­ments of such cel­lu­lar meshwork throughout the who­le body. Due to the dif­fe­rent pro­gres­si­ons of the dise­a­se in affec­ted as well as the com­plex and stron­gly vary­ing sym­ptoms, Endometriosis is often cal­led as “Chameleon of Gynecology” in medi­ci­ne. Endometriosis counts to the most fre­quent gyne­co­lo­gi­cal dise­a­ses and can occur in all peop­le with a ute­rus. In few cases, the tis­sue was also found in men during a pro­sta­te can­cer treatment. 

The dise­a­se is most likely to appe­ar bet­ween the ages of 35 and 45. About 8 to 15 per­cent of all peop­le with a ute­rus are affec­ted, which is around two mil­li­on peop­le in Germany. According to the WHO (World Health Organization), around 190 mil­li­on peop­le have been dia­gno­sed world­wi­de. Every year, 40,000 new cases are regis­tered in Germany.


As alrea­dy men­tio­ned, the dise­a­se pro­gres­si­on can vary great­ly. Half of tho­se affec­ted may requi­re per­ma­nent the­ra­py, while others with the dise­a­se can live without tre­at­ment or sym­ptoms.
Symptoms of endo­me­trio­sis may inclu­de chro­ni­cal pain, inter­me­dia­te blee­ding, nau­sea and vomi­t­ing, cycli­cal blee­ding from bowel and/or blad­der and occa­sio­nal­ly pain during sexu­al inter­cour­se and ovu­la­ti­on. Particularly fre­quent is seve­re pain during mens­trua­ti­on which can also occur cycle inde­pen­dent though. Endometriosis can lead to pain wit­hin the who­le body. In many cases, infer­ti­li­ty is pos­si­ble as well: 40 to 50 per­cent of the affec­ted have limi­ted fer­ti­li­ty due to the dise­a­se.
From a medi­cal point of view, endo­me­trio­sis is a sys­temic dise­a­se, which means that the sym­ptoms can affect the immu­ne sys­tem as well as the hor­mo­ne balan­ce. Therefore, it should be threa­tened by doc­tors from dif­fe­rent spe­cial­ties on an inter­di­sci­pli­na­ry basis.


It can take up to ten years befo­re a final dia­gno­sis is made, as mis­dia­gno­ses often occur. For examp­le, endo­me­trio­sis is com­mon­ly con­fu­sed with an inflamma­ti­on of the ova­ries, psy­cho­ge­nic com­p­laints, or PMS (pre­mens­tru­al syn­dro­me). Reason for this is the ver­sa­ti­li­ty of the dise­a­se, the gre­at vari­an­ce among pati­ents and the dif­fe­rent ways in which the body’s organs are affec­ted. Additionally, mens­tru­al com­p­laints are usual­ly tal­ked down and hard­ly taken serious­ly. When dia­gno­sing endo­me­trio­sis, it is the­re­fo­re important to take a detail­ed ana­mne­sis inter­view, as the natu­re and fre­quen­cy of sym­ptoms can pro­vi­de initi­al clues and can be decisi­ve in the dia­gnostic pro­ce­du­re. If endo­me­trio­sis is suspec­ted, the­re are several approa­ches, such as taking an ana­mne­sis inter­view, which is an in-depth con­ver­sa­ti­on of the sym­ptoms and the gene­ral con­di­ti­on. Furthermore, pal­pa­ti­on of the vagi­na, rec­tum or ute­ri­ne liga­ments are car­ri­ed out. An ultra­sound of the peri­to­ne­um or vagi­na can also be insight­ful. Depending on the sym­ptoms, colono­scopies may be car­ri­ed out.

The dise­a­se can now also be dia­gno­sed by spe­cia­lists using ima­ging tech­ni­ques such as ultra­sound or MRI.
Surgical inter­ven­ti­ons are the most com­mon pro­ce­du­re. During an abdo­mi­nal endo­scopy, tis­sue sam­ples (bio­psy) are taken and then exami­ned. This allows deter­mi­ning the loca­ti­on, seve­ri­ty and growth type of the endo­me­trio­sis foci and cysts. 


Various tre­at­ment pos­si­bi­li­ties exist to decre­a­se the sym­ptoms, but they are depen­dent on the inten­si­ty of com­p­laints as well as if the­re is a desi­re to have child­ren. Basically, the­re are three tre­at­ment opti­ons: Medication, hor­mo­nes, and sur­ge­ry. These are sup­ple­men­ted by addi­tio­nal the­ra­peu­tic approa­ches. For examp­le, pain­kil­lers, hor­mo­nes, or sur­gi­cal inter­ven­ti­on are recom­men­ded to pati­ents who main­ly com­p­lain about pain and cramps. But if the­re is a desi­re to have child­ren, a hor­mo­ne the­ra­py is not an opti­on, becau­se the hor­mo­nal acti­ve ingre­dients inhi­bit the endo­ge­nous hor­mo­ne pro­duc­tion wit­hin the ova­ries and the­re­fo­re also sup­press ovu­la­ti­on and mens­trua­ti­on. Fundamentally, hor­mo­ne the­ra­py invol­ves tre­at­ment with pro­ge­s­to­gen and birth con­trol pill, alt­hough some pills can make sym­ptoms worse. To reli­ef pain, also drugs from the GnRH ana­lo­gue group of acti­ve ingre­dients are used, which are syn­the­tic hor­mo­nal sub­s­tan­ces that pre­vent pre­ma­tu­re ovu­la­ti­on. Progestogen is a sex hor­mo­ne which is, next to est­ro­gen, com­po­nent of the birth con­trol pill. Preparations with pro­ge­s­to­gen are recom­men­ded to tre­at endo­me­trio­sis hor­mo­nal­ly becau­se they have a pain-reli­e­ving effect. But side effects can occur, such as inter­mens­tru­al blee­ding, redu­ced libi­do, and weight gain.

Most birth con­trol pills veri­fia­b­ly redu­ce pain sym­ptoms from affec­ted. However, side effects such as water reten­ti­on, a fee­ling of tight­ness in the chest, and hea­da­ches can also occur. Hormonal drugs from the GnRH ana­lo­gue group of acti­ve ingre­dients may help as well. Though, the­re are even more seve­re side effects pos­si­ble than with the birth con­trol pill. They often inclu­de an est­ro­gen defi­ci­en­cy, as the GnRH ana­lo­gies great­ly redu­ce the pro­duc­tion of fema­le hor­mo­nes. Similar to the sym­ptoms of the meno­pau­se, this can lead to mood swings, sleep dis­or­ders, hot flus­hes and vagi­nal dryness. 

Drug tre­at­ment main­ly invol­ves the pre­scrip­ti­on of ibu­profen and other pain-reli­e­ving sub­s­tan­ces. Endometriosis foci and cysts can usual­ly be remo­ved by sur­ge­ry such as abdo­mi­nal endo­scopy (laparo­scopy). However, endo­me­trio­sis has a high recur­rence rate: the endo­me­trio­sis foci can reap­pe­ar after sur­gi­cal remo­val. In extre­me cases, pati­ents even deci­de to have their ute­rus remo­ved (hys­terec­to­my) if the sym­ptoms are unbe­ara­ble, their life is too restric­ted by the dise­a­se, other tre­at­ment the­ra­pies have been unsuc­cess­ful and the­re is no desi­re to have child­ren. But this does not gua­ran­tee that the endo­me­trio­sis is cured. If ova­ries and fallo­pian tubes are not remo­ved, the sym­ptoms may per­sist; if both ova­ries are remo­ved, the pro­duc­tion of fema­le sex hor­mo­nes is stop­ped, and the meno­pau­se starts immediately. 

Counseling centers and self-help groups

In Germany, 100 medi­cal­ly cer­ti­fied endo­me­trio­sis faci­li­ties exist. A dis­tinc­tion is made bet­ween prac­ti­ces, cli­nics, and cen­ters. Beyond that, they are nume­rous coun­se­ling cen­ters like the “Endometriose-Vereinigung Deutschland e. V.”. This is the lar­gest and oldest asso­cia­ti­on of tho­se who are affec­ted by endo­me­trio­sis in Germany. The asso­cia­ti­on has over 3,000 mem­bers, is inde­pen­dent and acti­ve nati­on­wi­de. It offers free coun­se­ling and arran­ges con­ta­ct to local and vir­tu­al self-help groups.

The “Netzwerk Endometriose”, con­sis­ting of two affi­lia­ted self-help groups in Dresden and Leipzig, aims to pro­vi­de com­pre­hen­si­ve infor­ma­ti­on for suf­fe­rers and sup­port them in dif­fi­cult life situa­tions. If requi­red, affec­ted peop­le recei­ve infor­ma­ti­on on dia­gno­sis and tre­at­ment opti­ons. The self-help net­work offers a sen­se of secu­ri­ty and reli­ef due to the com­mu­ni­ty and com­pas­si­on among each other. 

Awareness campaign

Despite its high pre­va­lence and part­ly serious con­se­quen­ces for pain pati­ents, endo­me­trio­sis is hard­ly reco­gni­zed in socie­ty. A lot of peop­le are hea­ring about the dise­a­se for the first time when they are get­ting dia­gno­sed. However, the­re are cam­pai­gns that are tar­ge­ting to rai­se awa­reness of the disease.

Annually in March, the lar­gest cam­pai­gn world­wi­de takes place: the “Endometriosis Awareness Month”. The aim is to rai­se atten­ti­on of the dise­a­se and give tho­se affec­ted a voice. In 1993, the move­ment was brought to life by the “Endometriosis Association” in Milwaukee, USA. Symbol of the endo­me­trio­sis cam­pai­gn is a yel­low rib­bon, which, simi­lar to the pink rib­bon against bre­ast can­cer, makes a state­ment of awa­reness against the dise­a­se. In 2021, the “Endometriose Vereinigung Deutschland e.V.” deve­lo­ped the infor­ma­ti­on cam­pai­gn “JUNG UND ENDO” (Youth and Endo), whe­re they pro­vi­de tea­ching and work­shop con­cepts and mate­ri­als for youth work on the topics of mens­trua­ti­on, mens­tru­al com­p­laints, and endo­me­trio­sis. Moreover, the­re are brochu­res, pos­ters and digi­tal media. Free mate­ri­als on mens­trua­ti­on and endo­me­trio­sis are avail­ab­le for les­sons. The tea­ching and work­shop con­cept is pri­ma­ri­ly aimed at pupils aged 12 to 15 to edu­ca­te them about mens­trua­ti­on and dise­a­ses like endo­me­trio­sis at an ear­ly age. 

State of research

So far, the cau­ses of endo­me­trio­sis are not clear. Currently, the­re are no sci­en­ti­fi­cal­ly con­fir­med theo­ries on this; gene­ral­ly, the­re is a sex-rela­ted data gap in medi­ci­ne. As a result, up to now, the­re is no tre­at­ment which can cau­s­al­ly cure the disease.

But the­re are some the­ses. In 2023, rese­ar­chers of the “Science Translational Medicine”-Journal argue that fuso­bac­te­ria could be the cau­se of endo­me­trio­sis. Then, the use of anti­bio­tics would be an opti­on for tre­at­ment. Fusobacteria are natu­ral part of the oral and intes­ti­nal flo­ra. Though, if the immu­ne sys­tem is wea­ke­ned, this can lead to for­ma­ti­on of absces­ses in mouth or to abdo­mi­nal infec­tions. This can also lead to inflamma­ti­ons in the geni­tal area. Scientists of the uni­ver­si­ty Nagoya (Japan) exami­ned 155 women (79 peop­le affec­ted by endo­me­trio­sis, 76 peop­le not affec­ted by endo­me­trio­sis) to see whe­ther the bac­te­ria could also be found in the ute­rus. According to the stu­dy, the spe­ci­fic bac­te­ri­um was found in 64 per­cent of the affec­ted pati­ents, while less than ten per­cent of the healt­hy par­ti­ci­pants were found to have bac­te­ria in ute­rus. But if the fuso­bac­te­ria are cau­se, con­se­quence or side-effect of endo­me­trio­sis is unclear.

Thus, this is not a final result and fur­ther rese­arch is necessa­ry. With invest­ments of several mil­li­on Australian Dollars, Australia is far ahead in the cour­se if this, clo­se­ly fol­lo­wed by France. Both coun­tries pur­sue a natio­nal action plan to explo­re endo­me­trio­sis. In Germany, the­re is no such plan up to this point. In September 2023, requests by the Left Party and the CDU/CSU for a nati­on­wi­de edu­ca­ti­on and rese­arch stra­te­gy were rejec­ted in the German House of Representatives (Bundestag). In the last two deca­des, only 500,000 euros have been pro­vi­ded by the German government. In October last year, the Federal Ministry of Education and Research deci­ded to pro­vi­de five mil­li­on euros for rese­arch into endo­me­trio­sis for the first time from 2023.

Considering the pre­va­lence of endo­me­trio­sis and the cur­rent rese­arch sta­te, the five mil­li­on euros pro­vi­ded are rela­tively small. There is still known too litt­le about endo­me­trio­sis, even though so many peop­le suf­fer from this disease. 

Text: Marie-Florence Vierling
Translation: Renja-Arlene Dietze

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