If the title also makes you won­der what endo­me­trio­sis actually is and you don’t have a good ans­wer, then you are not alone. Endo­me­trio­sis is a rather unknown dise­ase, but the ‘Endo-March’ is sup­po­sed to change that. Here you can find our first arti­cle about endo­me­trio­sis, inclu­ding an explana­tion and defi­ni­tion of the dise­ase. In this second arti­cle we will pro­vide you with fur­ther infor­ma­tion about endo­me­trio­sis and ans­wer the six most important questions.

1. Who is suffering from endometriosis?

Endo­me­trio­sis affects 1 in 10 mens­trua­ting per­sons. The age spec­trum of people suf­fe­ring from endo­me­trio­sis is broad. Mens­trua­ting people are mainly only affec­ted in their fer­tile age, mea­ning from the first period up to menopause.

2. What causes endometriosis?

Unfor­tu­n­a­tely, the cau­ses for the deve­lo­p­ment of endo­me­trio­sis have not really been rese­ar­ched and are the­re­fore unclear. This is to be chan­ged by means of a peti­tion in Ger­many. So far, the only cer­tainty is that endo­me­trio­sis is benign (not can­cer). The theo­ries for the deve­lo­p­ment of the dise­ase range from hor­mo­nal dis­or­ders to mal­func­tions of the immune sys­tem and gene­tic pre­dis­po­si­tion. Ano­t­her attempt at explana­tion sees the cause of endo­me­trio­sis in the mus­cle move­ment of the ute­rus, which cau­ses tears  and the ute­rine lining to be able to move outwards.

3. What are the symptoms?

The sym­ptoms of endo­me­trio­sis are as varied and diverse as the people affec­ted them­sel­ves: from no sym­ptoms at all to pain that is unbe­ara­ble. About 65 per­cent of those affec­ted expe­ri­ence sym­ptoms. Depen­ding on where the endo­me­trio­sis spreads out­side the ute­rus, the sym­ptoms can be loca­li­sed there as well. The fol­lowing com­p­laints can be an indi­ca­tion of endo­me­trio­sis, for example:

  • Severe mens­trual pain
  • Mens­trual disorders
  • Chro­nic abdo­mi­nal pain
  • Gastro­in­tes­ti­nal pro­blems: bloa­ting, pain, or bloody defecation
  • Blad­der pain: pain when urinating
  • Bur­ning or cram­ping pain during or after sex
  • Pain in the back or knees
  • Infer­ti­lity and childlessness
  • Nau­sea

Endo­me­trio­sis rarely comes alone. It is often accom­pa­nied by other dise­a­ses. In addi­tion to the phy­si­cal com­p­laints, endo­me­trio­sis often has emo­tio­nal con­se­quen­ces as well. It also has an influ­ence on the gene­ral health and qua­lity of life of the per­son affec­ted. In gene­ral, the fre­quent and very pain­ful com­p­laints lead to exhaustion.

4. How is endometriosis diagnosed? 

The road to a dia­gno­sis is long and not really easy. It often takes several years before endo­me­trio­sis is dia­gno­sed. Often false dia­gno­ses are initi­ally made. The rea­sons for this are mani­fold. Those affec­ted are often not taken seriously and the com­p­laints are sim­ply dis­mis­sed as severe mens­trual pain. The sym­ptoms alone rarely lead to a dia­gno­sis. Only by exami­ning tis­sue sam­ples can a clear dia­gno­sis be made. The ear­lier endo­me­trio­sis is dia­gno­sed and cor­rectly trea­ted, the bet­ter the chan­ces of coun­ter­ac­ting the often pain­ful course of the disease.

5. What are the treatment options? 

Unfor­tu­n­a­tely, endo­me­trio­sis is a per­ma­nent, chro­nic dise­ase and so far can­not be cured by the­rapy. Due to a lack of rese­arch and stu­dies, it is unclear to what extent the spread of endo­me­trio­sis can be con­tai­ned or rever­sed. It is also not pos­si­ble to pre­dict the course of the dise­ase, alt­hough it is divi­ded into four sta­ges. Often the severe pain does not disap­pear until meno­pause, the last period in the life of a mens­trua­ting per­son. Howe­ver, there are dif­fe­rent approa­ches to how endo­me­trio­sis is attemp­ted to be trea­ted. The selec­ted methods depend stron­gly on the indi­vi­dual com­p­laints. A com­bi­na­tion of dif­fe­rent tre­at­ment opti­ons, such as gynae­co­logy, pain the­rapy, psy­cho­logy and holistic medi­cine as well as alter­na­tive medi­cine can be useful.

  • Hor­mo­nal tre­at­ments are sup­po­sed to pre­vent the growth of endo­me­trio­sis lesions
  • Endo­me­trio­sis lesi­ons can be sur­gi­cally remo­ved by means of laparo­scopy, which often leads to pain relief
  • Medi­ci­nal pain therapy
  • Alter­na­tive methods: Acu­p­unc­ture, tra­di­tio­nal Chi­nese medi­cine (TCM), home­o­pa­thy or her­bal medicine
  • Die­tary change

The aim is always to reduce or even pre­vent the growth of the endo­me­trio­sis and to relieve pain. Tre­at­ments often have to be repeated because the endo­me­trio­sis lesi­ons return. Par­ti­cu­larly in the case of chro­nic dise­a­ses, it is very important to know one’s own body very well. This is the only way to find ways to relieve the symptoms.

6. Can one still become pregnant with endometriosis?

The good news first: Yes, many people have child­ren des­pite having endo­me­trio­sis! Howe­ver, depen­ding on the stage at which endo­me­trio­sis is dia­gno­sed, some people are already infer­tile at the time of being dia­gno­sed. Others only become infer­tile after dia­gno­sis as the dise­ase pro­gres­ses. For about 30 to 50 per­cent of people with endo­me­trio­sis, pregnancy unfor­tu­n­a­tely repres­ents a major obstacle.

Personal endometriosis stories

If you would like to learn more about the con­di­tion and read about endo­me­trio­sis and the indi­vi­dual sto­ries of people affec­ted by it, I recom­mend the ‘Faces of endo­me­trio­sis’ series on Lea’s blog about endometriosis.

Britta Wiebe, period education, Vulvani
Co-Foun­der Vulvani | britta@vulvani.com | Web­site | + posts

Britta Wiebe is the co-foun­der of Vul­vani. She loves rese­ar­ching, wri­ting and designing new arti­cles or inno­va­tive edu­ca­tio­nal con­cepts about mens­trua­tion all day long. When she is not tra­vel­ling the world, she enjoys spen­ding time with her loved ones in the beau­ti­ful city of Ham­burg in Germany.