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 |
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 |
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 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 |
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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