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.