Young woman holds her abdomen in pain.

Endometriosis — When pain becomes the norm

A detail­ed report on the tre­at­ment plan at the Cha­ri­té Women’s Clinic.

Endo­me­trio­sis is one of the most com­mon abdo­mi­nal dise­a­ses in women. Rough­ly every 10th woman suf­fers from the sym­ptoms, and it often takes years. Until then, many women try to somehow cope with their pain. They belie­ve that even the most seve­re pain is nor­mal and part of the mens­tru­al peri­od. In order to find ways to deal with the sym­ptoms or to start the­ra­py, it is important to get to know your own body and its reac­tions. Good infor­ma­ti­on and working with expe­ri­en­ced, sup­por­ti­ve doc­tors. In order to give you a bet­ter insight into the the­ra­py, we have put tog­e­ther this arti­cle for you.

Spe­cial­ly trai­ned gyne­co­lo­gi­cal experts work at our endo­me­trio­sis cen­ter. Know­ledge and exper­ti­se on this com­plex dise­a­se are bund­led here. The­re is clo­se coope­ra­ti­on bet­ween dif­fe­rent medi­cal disciplines.

In Ger­ma­ny, it takes an average of six years from the appearan­ce of the first sym­ptoms to the dia­gno­sis of endo­me­trio­sis. The rea­sons for this unne­cessa­ri­ly long path of suf­fe­ring are usual­ly a lack of know­ledge and expe­ri­ence with this dise­a­se. This is exact­ly whe­re the idea of ​​a cer­ti­fied endo­me­trio­sis cen­ter comes in: Here, pati­ents are cared for and trea­ted by spe­cial­ly trai­ned experts. In this way, know­ledge and com­pe­tence are bund­led and used for the bene­fit of the pati­ents. The col­la­bo­ra­ti­on bet­ween the
medi­cal disci­pli­nes is prac­ti­ced daily.

Endo­me­trio­sis is one of the most com­mon abdo­mi­nal dise­a­ses in women. The cau­se is the accu­mu­la­ti­on of ute­ri­ne lining out­side the ute­rus. Experts also refer to such tis­sue islands as “endo­me­trio­sis foci”. They can hap­pen without a woman noti­cing. For others, howe­ver, endo­me­trio­sis is a chro­nic con­di­ti­on that cau­ses seve­re pain and lowers fer­ti­li­ty. It often takes years befo­re endo­me­trio­sis is iden­ti­fied as the cau­se of the sym­ptoms. Until the dia­gno­sis is made, many women try to somehow mana­ge their pain. They belie­ve that even the most seve­re pain is nor­mal and part of the mens­tru­al period.

So far, endo­me­trio­sis can­not be com­ple­te­ly cured — but the­re are various ways to tre­at the sym­ptoms. If the the­ra­py is tailo­red to the per­so­nal cir­cum­s­tan­ces and the seve­ri­ty of the dise­a­se, many women can live qui­te well with endometriosis.

As with other chro­nic dise­a­ses, it is important to get to know your own body and its reac­tions in order to find ways to deal with the sym­ptoms. Good infor­ma­ti­on and working with expe­ri­en­ced, sup­por­ti­ve doc­tors can help.

Symptoms

The main sym­ptom of endo­me­trio­sis is abdo­mi­nal pain. They often occur with the mens­tru­al peri­od, during or after inter­cour­se. The pain can some­ti­mes be stron­ger, some­ti­mes wea­ker and radia­te into the lower abdo­men, back and legs. They are often expe­ri­en­ced as cram­ping and can be accom­pa­nied by nau­sea, vomi­t­ing and diarrhea.

How the pain is expres­sed also depends on whe­re the ute­ri­ne lining has sett­led in the abdo­mi­nal cavi­ty. For examp­le, foci of endo­me­trio­sis can grow on the out­side of the ute­rus or in the wall of a fallo­pian tube. Often the ova­ries, the “Dou­glas space” bet­ween the ute­rus and rec­tum and the asso­cia­ted con­nec­ti­ve tis­sue are also affec­ted. When the ova­ries or fallo­pian tubes are affec­ted, fer­ti­li­ty is often impaired.

Some­ti­mes foci of endo­me­trio­sis also form in organs such as the blad­der or intes­ti­nes, which can lead to pro­blems with uri­na­ti­on and bowel move­ments. Seve­re endo­me­trio­sis can severely redu­ce qua­li­ty of life and performance.

To give you a bet­ter impres­si­on of the tre­at­ment opti­ons, we have crea­ted a chro­no­lo­gi­cal over­view of a pos­si­ble tre­at­ment plan for you in the fol­lowing sec­tion. A typi­cal endo­me­trio­sis the­ra­py in our endo­me­trio­sis cen­ter (level III) loo­ks like this:

1. First presentation

Now it’s on, your first appoint­ment in our endo­me­trio­sis cen­ter. Perhaps you were lucky and your doc­tor advi­sed you ear­ly on that your sym­ptoms could be rela­ted to endo­me­trio­sis. Perhaps you felt like many other fel­low suf­fe­rers and it cost you years and many visits to the doc­tor befo­re the word endo­me­trio­sis was used for the first time.

The aim of the first appoint­ment, the so-cal­led first pre­sen­ta­ti­on, is first and fore­mo­st a detail­ed sur­vey of your medi­cal histo­ry (ana­mne­sis). In order to opti­mal­ly pre­pa­re for the visit, we ask you to fill out our ana­mne­sis sheet in advan­ce. This hel­ps you not to for­get cru­cial facts in the exci­te­ment of the doctor’s talk. It will help your doc­tor to ful­ly under­stand and docu­ment your sym­ptoms (sym­ptoms).

In a per­so­nal con­ver­sa­ti­on, the results of the ana­mne­sis sheet will be sum­ma­ri­zed with you and it will be worked out which com­p­laints are in the fore­ground. Not only your pain and blee­ding pro­blems play a role here, but also, for examp­le, diges­ti­ve pro­blems, whe­ther you want to start a fami­ly in the near future and how much you or your part­ners­hip are bur­den­ed by your symptoms.

With your con­sent, your doc­tor will then car­ry out a detail­ed phy­si­cal exami­na­ti­on. You pro­bab­ly alrea­dy know a lot from your regu­lar exami­na­ti­ons at the gyne­co­lo­gist. None­theless, an exami­na­ti­on for suspec­ted endo­me­trio­sis is a litt­le more detailed:

At the begin­ning, a so-cal­led mir­ror adjus­t­ment (spe­cu­lum exami­na­ti­on) is car­ri­ed out. It is pos­si­ble to inspect the ent­i­re exter­nal geni­ta­lia (vul­va) and the vagi­na. In par­ti­cu­lar, the cer­vix (por­tio) and the pos­te­rior vagi­nal vault must be exami­ned care­ful­ly, sin­ce endo­me­tri­al foci may alrea­dy be identified.

Next, a pal­pa­ti­on exam is per­for­med. The doc­tor inserts one or two fin­gers one after the other into the vagi­na. Endo­me­tri­al foci on the cer­vix or bet­ween the vagi­na and rec­tum, which can be felt as pain­ful indu­ra­ti­ons or nodu­les, are often noti­ced here. You can also feel the posi­ti­on and mobi­li­ty of the ute­rus and pos­si­b­ly cysts on the ova­ry by addi­tio­nal­ly tou­ch­ing the abdo­mi­nal wall with the other hand (bima­nu­al pal­pa­ti­on exami­na­ti­on). You can also judge whe­ther your pel­vic floor mus­cles are alrea­dy very ten­se due to your sym­ptoms. At the end of the pal­pa­ti­on exami­na­ti­on, a fin­ger is also inser­ted into the rec­tum (rec­tal exami­na­ti­on) while ano­t­her fin­ger remains in the vagi­na. This is par­ti­cu­lar­ly important in order to pal­pa­te pos­si­ble endo­me­tri­al foci with bowel invol­ve­ment. Unfor­tu­n­a­te­ly, the­se are still often unde­tec­ted, which is why we attach gre­at impor­t­ance to this part of the inves­ti­ga­ti­on. Even if a rec­tal exam sounds embarr­as­sing or uncom­for­ta­ble at first, your doc­tor will help you relax and you will see that this part of the exam is nowhe­re near as uncom­for­ta­ble as you thought.

The pal­pa­ti­on exami­na­ti­on is fol­lo­wed by an ultra­sound exami­na­ti­on. Becau­se it is much easier to assess, the ultra­sound head should be inser­ted through the vagi­na (trans­va­gi­nal­ly). Each exami­ner has his own sche­me, which hel­ps to assess all organs in sequence and not to for­get any. A look at the uri­na­ry blad­der alrea­dy allows one to con­clu­de whe­ther it is affec­ted by endo­me­trio­sis. It should also be asses­sed in each case whe­ther endo­me­tri­al foci can be seen bet­ween the vagi­na and rec­tum or whe­ther the­re are other­wi­se indi­ca­ti­ons of intes­ti­nal invol­ve­ment. An assess­ment should be made of whe­ther the ute­rus can move to the blad­der and bowel or whe­ther the­re is alrea­dy evi­dence of adhe­si­ons. The exami­ner will also take a clo­se look at the ute­rus its­elf — the ultra­sound can often detect endo­me­trio­sis of the ute­rus (ade­no­myo­sis or ade­no­myo­sis ute­ri). The ova­ries are also tho­rough­ly inspec­ted. If the­re are so-cal­led endo­me­trio­mas (endo­me­trio­sis cysts on the ova­ry) in this area, this can be easi­ly reco­gni­zed with the ultra­sound. If you have dealt with endo­me­trio­sis a bit, you may alrea­dy know that endo­me­trio­sis foci are often on the peri­to­ne­um. The­se foci can usual­ly not be seen in the ultra­sound. All other typi­cal loca­liz­a­ti­ons, on the other hand, can be asses­sed with ultra­sound Very young women in par­ti­cu­lar are incre­a­singly fin­ding their way to us for con­sul­ta­ti­on hours. If you have not had sexu­al inter­cour­se befo­re, a trans­va­gi­nal ultra­sound is often not possible.

Many doc­tors then do what is known as an abdo­mi­nal ultra­sound. With this method, howe­ver, an assess­ment of the organs as descri­bed abo­ve is only pos­si­ble with dif­fi­cul­ty. In this case, we the­re­fo­re recom­mend an ultra­sound from the intes­ti­ne. That sounds uncom­for­ta­ble at first (the doc­tor is of cour­se awa­re of this), but you can use it to assess the organs just as well as with an ultra­sound from the vagina.

A kid­ney sound may be per­for­med after the trans­va­gi­nal exami­na­ti­on. If the pre­vious exami­na­ti­on reve­a­led indi­ca­ti­ons of deeply infil­tra­ting endo­me­trio­sis with invol­ve­ment of the ure­ters, your doc­tor must rule out that the­re is alrea­dy an obst­ruc­tion of the uri­ne. Uri­na­ry con­ges­ti­on does not cau­se any dis­com­fort at the begin­ning and so it can pro­gress unno­ti­ced until the kid­ney may no lon­ger func­tion pro­per­ly. For­tu­n­a­te­ly, that’s rare­ly the case with endometriosis.

After the ana­mne­sis and the exami­na­ti­on, the fin­dings are sum­ma­ri­zed and the likeli­hood of the dia­gno­sis of endo­me­trio­sis is dis­cus­sed. To make the dia­gno­sis of endo­me­trio­sis, from our point of view, no con­clu­si­ve sur­ge­ry with a tis­sue exami­na­ti­on is necessa­ry. A trai­ned doc­tor can make the dia­gno­sis with a high degree of cer­tain­ty based on the medi­cal histo­ry and exami­na­ti­on results.

At the latest after the dia­gno­sis has been made, the time has come to exp­lain what endo­me­trio­sis actual­ly is, how it deve­lo­ps, which the­ra­py opti­ons are avail­ab­le and which steps are sen­si­ble for you at the cur­rent time. This depends lar­ge­ly on your com­p­laints, your exami­na­ti­on results and your cur­rent life situa­ti­on. At the end of your first appoint­ment, you and your doc­tor will deter­mi­ne a tre­at­ment plan that will meet your needs and your indi­vi­du­al situation.

Endo­me­trio­sis is a chro­nic dise­a­se and alt­hough we can now do a lot to alle­via­te or even eli­mi­na­te sym­ptoms, we can­not (yet) cure it. This means that endo­me­trio­sis will likely be with you for as long as you are mens­trua­ting. In addi­ti­on, every step of the­ra­py will requi­re your coope­ra­ti­on — regard­less of whe­ther you regu­lar­ly take a hor­mo­ne pre­pa­ra­ti­on, an ope­ra­ti­on is plan­ned and / or you are dealing with endo­me­trio­sis with the help of a mul­ti­modal pain the­ra­py con­cept. Becau­se of this, it is important that you have a good under­stan­ding of this con­di­ti­on. We would like to help you on this path and on the one hand exp­lain the next steps to you using the tre­at­ment plan on your per­so­nal path and on the other hand ans­wer and cla­ri­fy gene­ral ques­ti­ons using the guide.

Our tip: Wri­te down all your ques­ti­ons now!

Further diagnostics

Some­ti­mes fur­ther dia­gnostic mea­su­res are use­ful in order to assess the spread of the endo­me­trio­sis even more pre­cise­ly and to be able to plan the fur­ther pro­ce­du­re reliably.

This can inclu­de the fol­lowing examinations:

● Sig­mo­ido­scopy with endo­so­no­gra­phy (exami­na­ti­on of the rectum)

This is a spe­cial type of colono­scopy in which a fle­xi­ble tube with a spe­cial ultra­sound head at the tip is inser­ted into the intes­ti­ne in order to be able to assess the wall lay­ers of the intes­ti­ne with regard to endo­me­trio­sis ingrowth. With the com­bi­ned rec­to­scopy, in which one can also assess the inner­most lay­er of the intes­ti­nal wall using a came­ra inte­gra­ted in the tube, any con­s­tric­tions can also be assessed.

● Colono­scopy (com­ple­te colonoscopy)

In a clas­sic colono­scopy, a fle­xi­ble tube is also inser­ted into the intes­ti­ne. In con­trast to endo­so­no­gra­phy, this has an inte­gra­ted came­ra and can the­re­fo­re only assess the intes­ti­nal muco­sa, i.e. the inner­most lay­er of the intes­ti­ne, from the insi­de. Howe­ver, endo­me­trio­sis ingrowth into the inte­rior of the intes­ti­ne is very rare and can usual­ly only be detec­ted during the blee­ding. This exami­na­ti­on alo­ne is the­re­fo­re rare­ly hel­pful in dia­gno­sing endo­me­trio­sis. In indi­vi­du­al cases it is nevertheless use­ful to be able to dis­co­ver high-lying intes­ti­nal sec­tions and pos­si­ble con­s­tric­tions cau­sed by endometriosis.

The latest devices have an endo­scope with an inte­gra­ted came­ra and ultra­sound head, so that endo­so­no­gra­phy and colono­scopy can be com­bi­ned. Of cour­se, all exami­na­ti­ons are not dan­ge­rous and help us a lot to bet­ter under­stand your illness.

● Kid­ney scintigraphy

With a kid­ney scin­ti­gra­phy, the func­tio­n­a­li­ty of both kid­neys can be cla­ri­fied. This should be con­si­de­red if the ultra­sound scan shows a kid­ney con­ges­ti­on. In con­trast to the blood tests, a sepa­ra­te ana­ly­sis of the kid­ney func­tion is pos­si­ble. You do not have to be fas­ting for a kid­ney scin­ti­gra­phy, you should in par­ti­cu­lar ensu­re that you drink enough flu­ids. Water is best here. If you lie quiet­ly for at least 30 minu­tes, a slight­ly radio­ac­ti­ve sub­s­tance is app­lied to you via a fle­xu­le (indwel­ling vein cathe­ter), which is first dis­tri­bu­t­ed in the body and then excreted via the kid­neys. lie quiet­ly, a slight­ly radio­ac­ti­ve sub­s­tance is app­lied to you via a fle­xu­la (indwel­ling vein cathe­ter), which is first dis­tri­bu­t­ed in the body and then excreted via the kid­neys. A spe­cial came­ra will take pic­tures of you for at least 30 minu­tes and can thus trace the path of the radio­ac­ti­ve sub­s­tance in your body and ana­ly­ze the amount excreted via the kid­neys. The exami­na­ti­on is asso­cia­ted with a low radia­ti­on expo­sure, which cor­re­sponds to about a third of the annu­al natu­ral radia­ti­on expo­sure in Ger­ma­ny. The radia­ti­on expo­sure can be fur­ther redu­ced by empty­ing the blad­der after the examination.

● cysto­scopy

If blad­der endo­me­trio­sis is suspec­ted, a uro­lo­gist or some­ti­mes a gyne­co­lo­gist can do a cysto­scopy. The sur­face of the blad­der wall can be asses­sed from the insi­de, but not seen through the dif­fe­rent lay­ers of the blad­der wall. If the blad­der wall bul­ges inwards due to the pene­tra­ti­on of endo­me­trio­sis into the wall, a tis­sue sam­ple may be taken to con­firm the dia­gno­sis. Remo­val of the endo­me­trio­sis through the blad­der does not make sen­se, howe­ver, sin­ce the endo­me­trio­sis can­not be com­ple­te­ly remo­ved through this access. A cysto­scopy is also done if the ure­ters need to be splin­ted. This is use­ful, for examp­le, in the case of ure­ter or kid­ney con­ges­ti­on under cer­tain cir­cum­s­tan­ces, as well as befo­re exten­si­ve ope­ra­ti­ons in the area
the ure­ter.

● MRI

Magne­tic reso­nance ima­ging (MRI) is a sec­tio­n­al ima­ging without x‑rays or radio­ac­ti­ve rays. With the help of a strong magne­tic field and radio waves, very pre­cise images of the insi­de of the body can be crea­ted. Wit­hin the pel­vis the­re is no addi­tio­nal bene­fit from MRI to trans­va­gi­nal ultra­sound in the hand of a trai­ned per­son. Out­side the pel­vis, howe­ver, MRI is supe­ri­or to all other non-inva­si­ve exami­na­ti­ons, so that if aty­pi­cal or very pro­noun­ced endo­me­trio­sis is suspec­ted, an MRI should be con­si­de­red for bet­ter the­ra­py and sur­gi­cal planning.

Com­pu­ted tomo­gra­phy (CT) does not play a role in the dia­gno­sis of endometriosis.

● Pre­sen­ta­ti­on of the fer­ti­li­ty center

If you have been try­ing to beco­me pregnant for more than a year without suc­cess, you should intro­du­ce yourself to a fer­ti­li­ty cen­ter with your part­ner. The­re, fur­ther exami­na­ti­ons of your hor­mo­nes as well as exami­na­ti­ons of your part­ner will be car­ri­ed out (e.g. che­cking the semen qua­li­ty (sper­mio­gram). A com­mon time­ta­ble and arran­ge­ments with you bet­ween your doc­tor and your fer­ti­li­ty cen­ter are essen­ti­al. For examp­le, an ope­ra­ti­on to rule out endo­me­trio­sis should only be car­ri­ed out if male cau­ses of ste­ri­li­ty have been ruled out.

● If necessa­ry, other disci­pli­nes (gas­tro­en­te­ro­lo­gy, gene­ral sur­ge­ry, ENT, …)

Depen­ding on the com­p­laints, it may be use­ful to inclu­de other disci­pli­nes in the dia­gno­sis. Under cer­tain cir­cum­s­tan­ces it can be use­ful e.g. food into­le­ran­ce or chro­nic inflamma­to­ry bowel dise­a­se
to be exclu­ded befo­re fur­ther dia­gnostic or the­ra­peu­tic steps are initiated.

medical cross-section of a woman's abdomen with inscription of the genital organs.

Therapy pillar 1: multimodal therapy


Endo­me­trio­sis is unders­tood as a chro­nic dise­a­se, so that we dis­cuss the various opti­ons of mul­ti­modal the­ra­py, hor­mo­nal the­ra­py and / or sur­ge­ry and work tog­e­ther to deve­lop an indi­vi­du­al the­ra­py con­cept that is adap­ted to the respec­ti­ve life situation.

We will intro­du­ce you to the pil­lars of tre­at­ment in more detail below.

Pillar 1: The multimodal therapy

By the term “mul­ti­modal the­ra­py con­cept” we mean a mul­ti­tu­de of sup­por­ti­ve mea­su­res that coun­ter your mon­th­ly pain on dif­fe­rent levels. In some cases, the­re is no sci­en­ti­fic evi­dence (no sci­en­ti­fic evi­dence) that the method hel­ps. Nevertheless, in this case the princip­le “he who heals is right” app­lies. That means: if a method hel­ps you, you don’t need sci­en­ti­fic pro­of of it.

The mul­ti­modal the­ra­py con­cept should accom­pa­ny you in any case — regard­less of whe­ther you deci­de with your doc­tor for con­ser­va­ti­ve or sur­gi­cal the­ra­py. Some methods of the­ra­py are pre­sen­ted below. It is then up to you to try them out and find out for yourself what hel­ps you. This path can be very indi­vi­du­al and varies from pati­ent to pati­ent. This can also take some pati­ence and self-disci­pli­ne at times. Some­ti­mes it is not that easy to find what hel­ps you the most among all the offers. Perhaps reha­bi­li­ta­ti­on tre­at­ment (“rehab” for short) is then sui­ta­ble for you, during which you will get to know various the­ra­py options.

Medicinal pain therapy

While hor­mo­nal or sur­gi­cal the­ra­py is aimed at com­ba­ting endo­me­trio­sis its­elf, the aim of drug pain the­ra­py is to com­bat the pain cau­sed by endo­me­trio­sis. This is important becau­se the human body has what is known as a “pain memo­ry”. This means that if the pain per­sists, the body will send pain signals to the brain at some point even if the pain sti­mu­lus is no lon­ger pre­sent. One then speaks of chro­nic pain. It also hap­pens that the body per­cei­ves long-stan­ding pain even more inten­se­ly. In the pro­cess, the pain­ful area of ​​the body is enlar­ged and a simp­le touch can be pain­ful in the sen­si­ti­zed area.

For this rea­son, it is recom­men­ded not to bra­vely endu­re pain, but to coun­ter it with sui­ta­ble pain­kil­lers. Sui­ta­ble here means that the amount and dosa­ge must not exceed a cer­tain level and only drugs that have a com­ple­men­ta­ry effect should be com­bi­ned. If the usu­al pain­kil­lers avail­ab­le in the phar­ma­cy without a pre­scrip­ti­on in the appro­ved doses do not help you ade­qua­te­ly in some situa­tions, a stron­ger, pre­scrip­ti­on drug may be indi­ca­ted. Talk to your trea­ting doc­tors about it. In some situa­tions it can also be use­ful to pre­sent yourself to a pain cen­ter in order to recei­ve an indi­vi­du­al the­ra­py plan there.

Diet change / nutritional advice

First of all, it should be empha­si­zed that the­re is still no sci­en­ti­fic evi­dence for the effec­ti­ve­ness of a cer­tain “endo­me­trio­sis diet” in the field of nut­ri­ti­on. Some stu­dies also con­tra­dict each other and so can
no gene­ral or abso­lu­te recom­men­da­ti­on can be made. Howe­ver, many women report that a diet chan­ge tailo­red to them has done them good.

In par­ti­cu­lar, endo­me­trio­sis-asso­cia­ted intes­ti­nal com­p­laints (the so-cal­led endo-bel­ly) can be alle­via­ted with the right diet. In this regard, it can help to redu­ce glu­ten and sugar as well as dai­ry pro­ducts or to try to omit the­se foods altog­e­ther. Pro­bio­tics can also help sup­port the intes­ti­nal flo­ra and redu­ce intes­ti­nal problems.

The few stu­dies that are now avail­ab­le regar­ding a link bet­ween diet and endo­me­trio­sis risk sug­gest that con­suming ple­nty of fresh (pre­fer­a­b­ly green) vege­ta­bles, omega‑3 fat­ty acids, soy pro­ducts, and dai­ry pro­ducts that are high in cal­ci­um and vit­amin D redu­ce the risk . In con­trast, satu­ra­ted fat, red meat, and alco­hol seem to incre­a­se the risk of endo­me­trio­sis. The­re are con­tra­dic­ting data regar­ding fruit and cof­fee, so that no clear recom­men­da­ti­on can be made in this regard. The­re are also stu­dies that have shown that anti­oxi­dant vit­amins (vit­amins A, C and E), vit­amin B, as well as zinc and folic acid appe­ar to redu­ce the risk. High-dose vit­amin D has also been shown in stu­dies to have a bene­fi­cial effect on endo­me­trio­sis. In one stu­dy, sub­sti­tu­ting fish oil also redu­ced the risk of endo­me­trio­sis. The fact that green tea extract has a redu­cing effect on endo­me­tri­al lesi­ons has so far only been shown in ani­mal expe­ri­ments, but it can be used on a tri­al basis.

Some pati­ents react to the ingesti­on of hist­ami­ne-con­tai­ning foods with incre­a­sed intes­ti­nal dis­com­fort or even incre­a­sed pain; here, too, it is worth rese­ar­ching whe­ther the­re is a con­nec­tion here.

It is important for yourself to find out what is good for you and what foods are making the sym­ptoms worse. Here it is advi­s­able to keep a “com­p­laint dia­ry” and to record exact­ly what you do and when
eaten and how you felt that day. If you give it a try and want to eli­mi­na­te cer­tain foods from the menu ent­i­re­ly, it makes sen­se not to omit several foods at once. If you feel bet­ter, it is some­ti­mes unclear which food to lea­ve out
the impro­ve­ment is due.

Stay curious about your indi­vi­du­al path and try to chan­ge your diet step by step. And if your cra­vings are too big, tre­at yourself to your favo­ri­te dish with plea­su­re. It does not help if the enjoy­ment of eating and thus the qua­li­ty of life decre­a­se due to remorse.

Howe­ver, the women’s expe­ri­ence shows how much influ­ence can be exer­ted (report Anna Lena Wil­ken with her book: As a rule, I am strong). That is why we con­si­der this topic to be very important and are cur­r­ent­ly in the pro­cess of laun­ching rese­arch pro­jects in this area as well.

Mental Wellbeing — Psychosomatic Imagination or
Psychotherapy

Stu­dies have shown that the men­tal sta­te can have a gre­at influ­ence on the per­cep­ti­on of pain. So we know that peop­le with depres­si­on have a signi­fi­cant­ly incre­a­sed pain per­cep­ti­on. On the other hand, in the case of endo­me­trio­sis, the dise­a­se its­elf can lead to depres­si­ve moods. If pati­ents walk from doc­tor to doc­tor for many years without being hel­ped or their social life is impai­red as a result of the pain, psy­cho­lo­gi­cal dis­tress is often a typi­cal side effect or even beco­mes the lea­ding sym­ptom. We were able to con­firm this with our pre­vious pati­ents. In a master’s the­sis by a psy­cho­lo­gy stu­dent, we were able to pro­ve that the lon­ger the pain dura­ti­on, the grea­ter the risk of depres­si­on. To break this vicious cir­cle, psy­cho­so­ma­tic or psy­cho­lo­gi­cal the­ra­py can be use­ful. This can also help to accept that one suf­fers from a chro­nic ill­ness and to deve­lop coping strategies.

The men­tal health of our pati­ents is very important to us, so we are very hap­py that we can offer a com­pre­hen­si­ve rese­arch pro­ject at the Cha­ri­té; if necessa­ry, the doc­tor will speak to you about par­ti­ci­pa­ting in the study.

For examp­le, we would like to inves­ti­ga­te the con­nec­tion bet­ween hor­mo­ne inta­ke and the occur­rence of depres­si­on, but on the other hand we would also like to con­duct struc­tu­red inter­views in order to gain bet­ter know­ledge of the respec­ti­ve situa­ti­on. The­re is defi­ni­te­ly too litt­le rese­arch here, we want to chan­ge that.

It is also important to men­ti­on that the­re are many pati­ents who­se rela­ti­ons­hips are bur­den­ed by their chro­nic ill­ness. Sex life can also be impai­red by the pain that is typi­cal of endo­me­trio­sis during sexu­al inter­cour­se (dys­pa­re­u­nia). So don’t be afraid to con­si­der sex or cou­ples the­ra­py. Here, too, we have a very empa­the­tic col­league who is the­re for you and your part­ner (if you are inte­res­ted, ask for an appoint­ment with Ms. Nico­le Gehr­mann, gyne­co­lo­gist and sex the­ra­pist at the Cha­ri­té women’s clinic).

Physiotherapy, exercise and sports

aThe fact that phy­si­cal acti­vi­ty and sport have a posi­ti­ve effect on the body and soul has been well rese­ar­ched. As alrea­dy descri­bed abo­ve, the psy­che has an important influ­ence on how we per­cei­ve pain. So-cal­led endor­phins are released during phy­si­cal acti­vi­ty and lift the mood — an endo­ge­nous method to incre­a­se psy­cho­lo­gi­cal well-being. In the case of chro­nic pain, tho­se affec­ted often take a gent­le pos­tu­re, which in turn inde­pendent­ly streng­t­hens the pain cir­cu­la­ti­on. In endo­me­trio­sis pati­ents, this reli­e­ving pos­tu­re and ten­si­on often affects the pel­vic floor. Phy­si­cal exer­cise hel­ps pre­vent or relie­ve cramps. At the same time, mus­cles are built up, stress relie­ved and the immu­ne sys­tem streng­t­he­ned — this also incre­a­ses well-being. It is now up to you to find out which sport is good for you and which should be inte­gra­ted per­ma­nent­ly into your ever­y­day life. In addi­ti­on to mus­cle buil­ding, tar­ge­ted pel­vic floor rela­xa­ti­on is also important.

Yoga or Pila­tes hel­ps many women, but aqua sports, run­ning or hiking in the fresh air are also recom­men­ded. Many also bene­fit from pel­vic floor exercises.

Phy­sio­the­ra­py can also be very hel­pful for spe­cial pro­blems or ques­ti­ons. In addi­ti­on to exer­ci­ses for streng­t­he­ning, stret­ching and releasing cramps, the tech­ni­que of trans­cu­ta­ne­ous elec­tro-ner­ve sti­mu­la­ti­on with bio­feed­back (TENS) is avail­ab­le. Low-fre­quen­cy cur­rent impul­ses are used here, which are inten­ded to redu­ce the sen­si­ti­vi­ty to pain. Some health insu­rers take on this the­ra­py — even if con­clu­si­ve sci­en­ti­fic pro­of of its effec­ti­ve­ness is (still) lacking.

Complementary treatments — osteopathy and traditional
chinese therapy with acupuncture.

Some pati­ents have good expe­ri­en­ces with TCM (Tra­di­tio­nal Chi­ne­se Medi­ci­ne) and its important pil­lar of acu­p­unc­tu­re. Even if the­re is often a lack of sci­en­ti­fic evi­dence of effec­ti­ve­ness, the­se the­ra­pies can sup­port and accom­pa­ny the medi­cal tre­at­ment approach. It is important to find a the­ra­pist to whom you can feel good access and feel comfortable.

Osteopathy

Per­sis­tent pain often leads to poor pos­tu­re of the ent­i­re mus­cu­los­keletal sys­tem. The­re­fo­re a holistic tre­at­ment is necessa­ry here. In our eyes, osteo­pa­thy is an important aspect, becau­se spe­ci­fic manu­al tre­at­ment relea­ses mus­cles and fasciae again, ther­eby reli­e­ving misa­lign­ments — espe­cial­ly of the ileo­sa­cral joint. At the same time, the upper shoul­der gird­le and dia­phragm can also be affec­ted. Some health insu­rers make addi­tio­nal pay­ments here, so this form of tre­at­ment should defi­ni­te­ly be integrated.

Stress reduction and “home remedies”

As descri­bed abo­ve, men­tal well­being is an important approach to lea­ding a hap­py life with and des­pi­te endo­me­trio­sis. Taking care of yourself and taking time for yourself are steps that are a key to more inner balan­ce, even without endo­me­trio­sis. Even if stress can never be com­ple­te­ly avoided in our packed ever­y­day life, one should con­scious­ly take time out and redu­ce stress as much as possible.

Well-known “home reme­di­es” that many pati­ents alrea­dy use on a regu­lar basis can also be hel­pful against pain. By app­ly­ing heat to the pain­ful are­as or taking a warm bath in the tub, many women expe­ri­ence noti­ce­ab­le reli­ef from acu­te com­p­laints. With them, warm­th has a rela­xing, cal­ming and antis­pas­mo­dic effect. Medi­ta­ti­on, auto­ge­nic trai­ning or pro­gres­si­ve mus­cle rela­xa­ti­on can also have this effect.

Therapy pillar 2: operative therapy

In our cen­ter we have alrea­dy cared for more than 15,000 endo­me­trio­sis pati­ents accord­ing to our phi­lo­so­phy and expe­ri­ence. As alrea­dy descri­bed in the dia­gnostic sec­tion, no ope­ra­ti­on for pure dia­gno­sis needs to be per­for­med, but it can of cour­se also be use­ful in indi­vi­du­al cases and must be dis­cus­sed indi­vi­du­al­ly. For examp­le, in some coun­tries, his­to­lo­gi­cal con­fir­ma­ti­on of endo­me­trio­sis is man­da­to­ry befo­re fer­ti­li­ty tre­at­ment can be initia­ted (Aus­tria). Or on your part the­re is a desi­re for a defi­ni­ti­ve cla­ri­fi­ca­ti­on. The dia­gno­sis of a rele­vant endo­me­trio­sis can usual­ly be made through an expe­ri­en­ced exami­na­ti­on sole­ly through the ana­ly­sis of your sym­ptoms and the cli­ni­cal examination.

If the­re is no cur­rent desi­re to have child­ren and the­re is no evi­dence of organ dest­ruc­tion, con­ser­va­ti­ve hor­mo­nal the­ra­py can be car­ri­ed out first; if the sym­ptoms per­sist, one can wait and see. Howe­ver, if the sym­ptoms per­sist under hor­mo­nal the­ra­py, then peri­to­ne­um foci are likely and sur­gi­cal remo­val of the­se makes sen­se. For this decisi­on, howe­ver, it is important to have been blee­ding-free for at least 3 mon­ths under hor­mo­nal the­ra­py; if you had blee­ding under hor­mo­nal the­ra­py, this is usual­ly asso­cia­ted with sym­ptoms, then that is it
under­stand­a­ble becau­se this pain is cau­sed by the uterus.

Your doc­tor should recom­mend sur­ge­ry if:

  1. the cli­ni­cal exami­na­ti­on shows evi­dence of deeply infil­tra­ting endo­me­trio­sis with seve­re sym­ptoms or the risk of per­ma­nent organ dama­ge. An examp­le of this is a con­ges­ti­on of the ure­ters or kid­neys. This can occur on one or both sides and cau­ses the kid­ney to lose its func­tion over a long peri­od of time.
  2. Con­ser­va­ti­ve (non-sur­gi­cal) the­ra­py has not led to suf­fi­ci­ent sym­ptom improvement.
  3. On your part, the­re is an urgent need for his­to­lo­gi­cal con­fir­ma­ti­on of the dia­gno­sis. Howe­ver, the dia­gno­sis of a rele­vant endo­me­trio­sis is usual­ly only pos­si­ble through the ana­ly­sis of yours
    Com­p­laints and the cli­ni­cal exami­na­ti­on and does not requi­re any his­to­lo­gi­cal confirmation.
  4. You have not beco­me pregnant for more than a year des­pi­te having regu­lar sexu­al inter­cour­se. Howe­ver, befo­re taking any fur­ther steps, you should first be pre­sen­ted to a fer­ti­li­ty cen­ter, in par­ti­cu­lar to rule out male cau­ses of sterility.

What about pain reli­ef? Isn’t that also an indi­ca­ti­on for sur­ge­ry? Yes, of cour­se, but a holistic con­cept should be pur­sued; This means, among other things, as few ope­ra­ti­ons as pos­si­ble and if ope­ra­ti­ons, then as effec­tively as pos­si­ble. Unfor­tu­n­a­te­ly, becau­se the pain asso­cia­ted with endo­me­trio­sis is com­plex, sur­ge­ry can­not always remo­ve all pain. In the past, a lack of ana­ly­sis of the com­p­laints and pain has led to many women having mul­ti­ple ope­ra­ti­ons, some of which were unsuc­cess­ful. The rea­sons for an ope­ra­ti­on must the­re­fo­re be care­ful­ly con­si­de­red. It should be noted at this point that only about half of the pati­ents are sym­ptom-free after sur­gi­cal endo­me­trio­sis removal.

For women who have not yet com­ple­ted fami­ly plan­ning, the top prio­ri­ty is organ pre­ser­va­ti­on. This exp­lains, howe­ver, that not all endo­me­tri­al foci can always be com­ple­te­ly remo­ved, e.g. if the ute­rus its­elf is affec­ted (ade­no­myo­sis ute­ri) or if the ova­ries are affec­ted. This can the­re­fo­re con­ti­nue to be the cau­se of pain.

In addi­ti­on, recur­ring pain can lead to chro­nic pain over a lon­ger peri­od of time, which can lead to secon­da­ry pel­vic floor chan­ges and must be trea­ted with mul­ti­modal the­ra­py
should be. Fur­ther ope­ra­ti­ons tend to lead to a wor­se­ning of the pain.

If endo­me­tri­al foci are in the area of ​​the ute­rus, some women with very seve­re sym­ptoms con­si­der an ope­ra­ti­on to remo­ve the ute­rus (hys­terec­to­my). The foci that are adja­cent to the ute­rus can also be remo­ved. Women usual­ly only con­si­der hys­terec­to­my if the endo­me­trio­sis has severely restric­ted their lives, other tre­at­ments have not been suc­cess­ful, and they are sure that they no lon­ger want to have a child. A woman’s age also plays an important role in deter­mi­ning whe­ther or not to have the ute­rus remo­ved. In addi­ti­on, an ope­ra­ti­on only makes sen­se if the results of the exami­na­ti­on actual­ly sug­gest an impro­ve­ment in the sym­ptoms. Usual­ly, when the ute­rus is remo­ved, the ova­ries are left in place in order to keep the hor­mo­nes produced.

Howe­ver, hys­terec­to­my alo­ne does not gua­ran­tee that the endo­me­trio­sis will be cured after­wards. As long as the ova­ries are still func­tio­n­al­ly acti­ve and pro­du­cing est­ro­gen, endo­me­tri­al foci in other loca­ti­ons con­ti­nue to be sti­mu­la­ted and can cau­se dis­com­fort. Remo­ving the ova­ries stops the pro­duc­tion of fema­le sex hor­mo­nes (arti­fi­cial meno­pau­se), ther­eby sti­mu­la­ting the endo­me­tri­al foci. After this ope­ra­ti­on, some women have such seve­re gene­ral sym­ptoms due to the dis­con­ti­nua­tion of the hor­mo­nes that they want hor­mo­ne tre­at­ment with est­ro­gen. Then it may be that the hor­mo­ne pre­pa­ra­ti­ons trig­ger endo­me­trio­sis sym­ptoms again. Remo­val of the ova­ries is the­re­fo­re gene­ral­ly con­si­de­red from the age of 45 at the ear­liest, also in order to keep pos­si­ble long-term side effects (incre­a­sed risk of osteo­po­ro­sis, incre­a­sed risk of heart attacks) as low as possible.

OP time

Regar­ding the time of ope­ra­ti­on in the cycle, the­re is no com­ple­te­ly uni­form recommendation.

If you are cur­r­ent­ly taking hor­mo­nal the­ra­py, we recom­mend pausing it and only per­forming the ope­ra­ti­on after at least two mens­tru­al peri­ods. Accord­ing to Köh­ler et al. (https://www.ncbi.nlm.nih.gov/pubmed/19819448) the hor­mo­nal the­ra­py results in downs­ta­ging and inac­ti­va­ti­on of the endo­me­tri­al foci, which can no lon­ger be seen so clear­ly during the ope­ra­ti­on and can the­re­fo­re be over­loo­ked more often the ope­ra­ti­on may not be a com­ple­te remo­val of the endometriosis.

In the case of a cla­ri­fi­ca­ti­on about the desi­re to have child­ren, we also recom­mend per­forming the ope­ra­ti­on bet­ween the 1st and 10th day of the cycle, espe­cial­ly if the ope­ra­ti­on is com­bi­ned with a dia­gnostic ute­ri­ne spe­ci­men and a paten­cy check of the fallo­pian tubes (chro­m­opertu­ba­ti­on). At this point, the visi­bi­li­ty in the ute­rus is bet­ter if the mucous mem­bra­ne is only slight­ly built up. In addi­ti­on, a pregnan­cy may theo­re­ti­cal­ly have occur­red in the second half of the cycle after ovu­la­ti­on, which is not yet detec­ted by a regu­lar uri­ne pregnan­cy test.

In the case of endo­me­trio­sis reno­va­tions, this can also be devia­ted from, sin­ce endo­me­trio­sis foci can be dis­play­ed par­ti­cu­lar­ly well, espe­cial­ly short­ly befo­re the blee­ding, both in the ute­ri­ne spe­ci­men and in the laparo­scopic examination.

Preparation for surgery

If the joint decisi­on on an ope­ra­ti­on has been made and an appoint­ment has been made, fur­ther pre­pa­ra­to­ry mea­su­res must be car­ri­ed out befo­re­hand. This inclu­des the ope­ra­ti­on brie­fing, in which your doc­tor exp­lains the gene­ral pro­ce­du­re of the ope­ra­ti­on and both the gene­ral and spe­ci­fic risks.

How exact­ly does the pro­ce­du­re work? Can the­re be side effects or com­pli­ca­ti­ons? The ope­ra­ting doc­tor will cla­ri­fy the­se and other important ques­ti­ons with you in an initi­al dis­cus­sion. After­ca­re and rehab are also discussed.

The anesthe­tist will then pro­vi­de infor­ma­ti­on. The various forms of anesthe­sia, their pro­cess and risks and, if necessa­ry, spe­cial pain the­ra­pies are dis­cus­sed. Depen­ding on the pre­vious ill­nes­ses or pre­vious ope­ra­ti­ons, the anesthe­tist recom­mends fur­ther exami­na­ti­ons, for examp­le to ensu­re the func­tio­n­a­li­ty of the heart and lungs.

When a blood sam­ple is taken, not only the regu­lar blood count, but also kid­ney values ​​and coagu­la­ti­on are che­cked. The value CA 125 is not sui­ta­ble as an acti­vi­ty mar­ker for endo­me­trio­sis, as this is a non-spe­ci­fic value, which is incre­a­sed in dise­a­ses of the peri­to­ne­um or ova­ry, inclu­ding peri­to­ni­tis or ova­ri­an diseases.

If an ope­ra­ti­on invol­ving the bowel is plan­ned, your doc­tor will give you recom­men­da­ti­ons on laxa­ti­ve mea­su­res befo­re the ope­ra­ti­on. It should be empha­si­zed here that if a com­plex endo­me­trio­sis ope­ra­ti­on is plan­ned even with par­ti­al bowel res­ec­tion, it is advi­s­able to con­si­der local pain the­ra­py (epi­du­ral anesthe­sia) for post­ope­ra­ti­ve pain con­trol. Pain­kil­lers can then be given on top of it and we have to give less all over the body, which in turn has side effects. This may sound a bit sca­ry at first, but it is usual­ly a gre­at advan­ta­ge and is also recom­men­ded by us gynecologists.

We ask you to pay spe­cial atten­ti­on to your per­so­nal hygie­ne on the day or in the morning befo­re the ope­ra­ti­on, inclu­ding clea­ning the navel, espe­cial­ly if you have a laparoscopy.

OP process

For a plan­ned ope­ra­ti­on, it is advi­s­able to be sober. This means that at least six hours should have elap­sed bet­ween the last time you had food and drink and the ope­ra­ti­on. This also inclu­des chewing gum and smo­king. Clear drinks such as water or tea without addi­ti­ves are pos­si­ble in small quan­ti­ties up to two hours befo­re an ope­ra­ti­on. The­se strict rules ser­ve to pro­tect you from so-cal­led aspi­ra­ti­on pneu­mo­nia! The sto­mach con­tents with sto­mach acid run up the eso­pha­gus into the lungs and can lead to seve­re pneu­mo­nia the­re. In the case of plan­ned, so-cal­led elec­ti­ve inter­ven­ti­ons, we do not want to take this risk for you and insist on the fas­ting times men­tio­ned above.

After you have been cal­led by the OR team, you will be brought to the OR by the nur­sing staff or a ser­vice team. The anesthe­tist will usual­ly meet you the­re. Depen­ding on the acti­vi­ty, your doc­tor will try again to ans­wer any ques­ti­ons you may have.

An endo­me­trio­sis ope­ra­ti­on is usual­ly car­ri­ed out by laparo­scopy, ie. Mini­mal­ly inva­si­ve. Endo­me­trio­sis sani­ta­ti­on can take from 20 minu­tes to several hours, depen­ding on the extent. With a laparo­scopy, one usual­ly goes into the abdo­men via the navel and then pumps car­bon dioxi­de into the abdo­men so that the abdo­mi­nal wall is lifted from the organs and the working tro­car slee­ves can then be inser­ted into the necessa­ry posi­ti­ons in the lower abdo­men with signi­fi­cant­ly redu­ced risk. Usual­ly the­se are two to three approx. 1 cm long incisi­ons on the left, cen­ter and right in the lower abdo­men. If you have alrea­dy had several pre­vious ope­ra­ti­ons, it may be a safe opti­on to insert the first tro­car on the left side below the cos­tal arch in order to insert the came­ra from the­re and remo­ve any adhe­si­ons from pre­vious ope­ra­ti­ons in the area of ​​the navel under sight and then car­ry out the ope­ra­ti­ons as usual .

During a laparo­scopy, all abdo­mi­nal organs are shown, inclu­ding the dia­phragm, liver, spleen, sto­mach, intes­ti­nes and appen­dix. Only then do you inspect the fema­le organs in the pel­vis. During a laparo­scopy, pho­to docu­men­ta­ti­on can usual­ly be pro­vi­ded so that the fin­dings and sur­gi­cal steps can be demons­tra­ted to you after an operation.

Very rare­ly, usual­ly only in an emer­gen­cy situa­ti­on, it is necessa­ry to ope­ra­te through an abdo­mi­nal incisi­on for endo­me­trio­sis reha­bi­li­ta­ti­on. This can then be done eit­her across the lower abdo­men over approx. 10 cm or leng­thways from the pubic bone to the navel, very rare­ly beyond.

If part of the intes­ti­ne has to be remo­ved, the affec­ted part is usual­ly cut out and the healt­hy ends sewn back tog­e­ther (ana­s­to­mo­sis). Most intes­ti­nal endo­me­trio­sis lie in the area of ​​the rec­tum, which has a reser­voir func­tion until the sti­mu­lus to defe­ca­te occurs. This intes­ti­nal area must the­re­fo­re be able to tole­ra­te lar­ge chan­ges in volu­me. A suture in par­ti­al res­ec­tions in the area of ​​the rec­tum is the­re­fo­re expo­sed to extre­me­ly high stres­ses due to recur­ring stret­ching of the intes­ti­nal wall. The­re­fo­re it can some­ti­mes be necessa­ry to crea­te a (tem­pora­ry) arti­fi­cial anus. A pie­ce of the small intes­ti­ne is sewn to the abdo­mi­nal wall so that the stool con­tents can flow away well abo­ve the suture in the rec­tum. In this way, the ana­s­to­mo­sis can heal in peace without stret­ching sti­mu­li and the arti­fi­cial anus can be moved back after a few weeks. A per­ma­nent arti­fi­cial anus is only very rare­ly required.

If endo­me­tri­al foci occur in the area out­side the small pel­vis during the ope­ra­ti­on, your doc­tor may call in sur­ge­ons from other spe­cia­list depart­ments for the ope­ra­ti­on so that the gene­ral sur­ge­on may be invol­ved in the bowel or the uro­lo­gist may ope­ra­te on endo­me­trio­sis of the ure­ter. Howe­ver, depen­ding on the trai­ning of your gyne­co­lo­gist, simp­ler inter­ven­ti­ons can also be car­ri­ed out without the help of other spe­cia­list departments.

Objec­ti­ves of the operation:

  1. Con­fir­ma­ti­on of the dia­gno­sis (through his­to­lo­gi­cal analysis)
  2. Deter­mi­na­ti­on of the spread of endometriosis
  3. Reduc­tion of com­p­laints through maxi­mum endo­me­trio­sis reha­bi­li­ta­ti­on, pos­si­b­ly with remai­ning fin­dings depen­ding on the agree­ment made befo­re the ope­ra­ti­on (ute­rus with ade­no­myo­sis ute­ri and incom­ple­te fami­ly plan­ning, slight intes­ti­nal invol­ve­ment without com­p­laints to avoid bowel surgery, …)

After the operation

After the ope­ra­ti­on you will first spend a few hours in the reco­very room, whe­re you will be asked whe­ther you are in pain and will be given addi­tio­nal pain medi­ca­ti­on if necessa­ry. Nor­mal­ly, you will be trans­fer­red from the reco­very room to the nor­mal hos­pi­tal ward, whe­re you will con­ti­nue to be loo­ked after. Depen­ding on the time of the ope­ra­ti­on and the rest of the ope­ra­ti­on pro­gram of the day, your doc­tor will talk to you about your fin­dings and the cour­se of the ope­ra­ti­ons on the day of the ope­ra­ti­on or the fol­lowing day at the latest. In addi­ti­on, will your doc­tor be able to give you indi­vi­dua­li­zed recom­men­da­ti­ons on how to proceed?

Check­list ques­ti­ons to ask my doctor:

● Do I even have endo­me­trio­sis?
● How widespread was my dise­a­se?
● What other tre­at­ment opti­ons can I con­si­der?
● What are their advan­ta­ges or dis­ad­van­ta­ges?
● Would you recom­mend fur­ther tre­at­ments?
● Am I enti­t­led to fol­low-up tre­at­ment (AHB)?
● When should I next intro­du­ce mys­elf to you?

Depen­ding on the extent of the ope­ra­ti­on, you will spend bet­ween 1 and 5 nights in the hos­pi­tal after the ope­ra­ti­on. The uri­na­ry cathe­ter can usual­ly be remo­ved after get­ting up for the first time, occa­sio­nal­ly in the evening of the ope­ra­ti­on, usual­ly the next morning. If a par­ti­al blad­der res­ec­tion was per­for­med during your ope­ra­ti­on, the cathe­ter usual­ly has to remain in place for 7 to 10 days so that the blad­der wound can heal undisturbed.

Sin­ce the ner­ve ple­xu­s­es of the blad­der are occa­sio­nal­ly shown during the ope­ra­ti­on, we check whe­ther they can uri­na­te well after the ope­ra­ti­on. This can some­ti­mes lead to dis­rup­ti­ons, so that spe­cial trai­ning is requi­red here. It is then necessa­ry to keep calm, the ner­ve sup­ply is usual­ly only irri­ta­ted and needs a few days to a few weeks to rege­ne­ra­te. To do this, we usual­ly insert a uri­na­ry cathe­ter again, and occa­sio­nal­ly we sup­port this pha­se with spe­cial medication.

During the inpa­ti­ent stay, the social ser­vices should intro­du­ce them­sel­ves to you to talk to you about reha­bi­li­ta­ti­on mea­su­res or fol­low-up tre­at­ment. The­re are cer­tain insti­tu­ti­ons that spe­cia­li­ze in endo­me­trio­sis. You are wel­co­me to refer to the
web­site of the Ger­man Endo­me­trio­sis Asso­cia­ti­on befo­re the interview.

Therapy pillar 3: drug therapy

Tre­at­ment with medi­ca­ti­on is pri­ma­ri­ly aimed at reli­e­ving or eli­mi­na­ting seve­re pain or cram­ping asso­cia­ted with mens­trua­ti­on. Pain­kil­lers and hor­mo­nal agents that sup­press ovu­la­ti­on (hor­mo­nal down­re­gu­la­ti­on) are avail­ab­le for this pur­po­se. In the case of recur­ring but not extre­me­ly stress­ful abdo­mi­nal com­p­laints, pain­kil­lers or ges­ta­gens in the form of mono- or com­bi­ned pre­pa­ra­ti­ons can pro­vi­de noti­ce­ab­le reli­ef. The­se pre­pa­ra­ti­ons are often very well tole­ra­ted and are the­re­fo­re usual­ly also sui­ta­ble for young women with endo­me­trio­sis. If they don’t bring enough reli­ef, stron­ger medi­ca­ti­ons are an option.

Pain­kil­ler

Pain­kil­lers from the group of so-cal­led non-ste­ro­idal anti-inflamma­to­ry drugs (NSAIDs) are often used to tre­at mens­tru­al sym­ptoms, but also for endo­me­trio­sis. The­se redu­ce the fre­eing of
pain mes­sen­gers. The­se inclu­de, for examp­le, the acti­ve ingre­dients ibu­profen, diclo­fe­nac and par­acet­amol. Some of the­se drugs are avail­ab­le over-the-coun­ter, others are only avail­ab­le on pre­scrip­ti­on in hig­her doses. Nov­lagin and Met­ami­zol are also suitable.

NSAIDs can effec­tively relie­ve seve­re mens­tru­al pain and are usual­ly well tole­ra­ted as long as the pain is acu­te. At first, cli­ni­cal expe­ri­ence shows that they can help with peri­od pain qui­te effec­tively. But the­re are few stu­dies that inves­ti­ga­te its effec­ti­ve­ness for other pain cau­sed by endo­me­trio­sis. The­se drugs can cau­se side effects such as sto­mach upset, nau­sea, and hea­da­che. Without medi­cal advice, pain­kil­lers should the­re­fo­re not be taken fre­quent­ly or for a long time.

Over time, howe­ver, the­se drugs can lose their effec­ti­ve­ness, women have to take more and more pain­kil­lers, and this is whe­re chro­ni­fi­ca­ti­on mecha­nisms come into play or a pro­gres­si­on of the endo­me­tri­al lesions.

Peri­od pain that can­not be trea­ted well with 1–2 ibu­profen 600 mg, so that the­re is no ina­bi­li­ty to work and / or bedrid­den, should be fur­ther clarified.

Some col­leagues recom­mend so-cal­led opio­ids to tre­at seve­re pain. The­se reme­di­es imi­ta­te the effects of the body’s own pain-reli­e­ving sub­s­tan­ces and influ­ence how pain is felt in the brain. Opio­ids may only be used if pre­scri­bed by a doc­tor. Espe­cial­ly with the more effec­ti­ve opio­ids, the­re is a risk of depen­dence with pro­lon­ged use. Side effects such as nau­sea and vomi­t­ing, con­s­ti­pa­ti­on, tired­ness, diz­zi­ness and fluc­tua­tions in blood pres­su­re can occur. No reli­able data are avail­ab­le yet on the effect of the­se pain­kil­lers in endo­me­trio­sis and are not indi­ca­ted unless this is done under the care of very expe­ri­en­ced endo­me­trio­sis spe­cia­lists and pain the­ra­pists
is taken.

Hor­mo­nal treatments

Hor­mo­nal acti­ve ingre­dients sup­press the body’s own hor­mo­ne pro­duc­tion in the ova­ries and thus also ovu­la­ti­on and mens­tru­al blee­ding. They are not sui­ta­ble for women try­ing to get pregnant.

It is important to us that you under­stand the pro­ces­ses in the hor­mo­nal cycle in order to under­stand the effect of the body’s own hor­mo­ne pro­duc­tion on endo­me­trio­sis and also the effect of hor­mo­ne the­ra­py on endo­me­trio­sis. It is important that you make your own per­so­nal opi­ni­on with regard to the risk / bene­fit assess­ment
can. We are con­cer­ned with your qua­li­ty of life, taking into account the aspects of unt­rea­ted endometriosis.

A cur­rent trend is that hor­mo­nes have more dis­ad­van­ta­ges than advan­ta­ges and this may well be jus­ti­fied for women without hor­mo­ne-depen­dent dise­a­ses such as endo­me­trio­sis. In case of a
endo­me­trio­sis tre­at­ment the­re is a medi­cal indication.

We have the pro­blem that:

  1. Unt­rea­ted endo­me­trio­sis pain is often extre­me­ly seve­re, which can hard­ly be mana­ged with mul­ti­modal the­ra­pies and, if the­se are trea­ted inef­fec­tively, more and more lead to chro­nic pain, which in turn cau­ses secon­da­ry chan­ges such as pel­vic floor dys­func­tion and incre­a­sing pel­vic pain, such as pain during inter­cour­se, uri­na­ti­on and defecation
  2. Endo­me­trio­sis can pro­gress during the nor­mal cycle; if organs are not yet dama­ged, this can be asso­cia­ted with pos­si­ble dama­ge to fer­ti­li­ty over the cour­se of years
  3. Even after endo­me­trio­sis has been sur­gi­cal­ly remo­ved, this dise­a­se has a strong ten­den­cy to recur (10% / year for peri­to­ne­um foci; 30% for cysts); this is also signi­fi­cant­ly redu­ced when hor­mo­nal is initia­ted
    Long-term the­ra­py, espe­cial­ly important if the­re were cysts and an ope­ra­ti­on has alrea­dy been car­ri­ed out on the ova­ry. Fur­ther dama­ge to organs due to the occur­rence of new cysts should be avoided here,
    until the desi­re to have child­ren could be imple­men­ted. Too litt­le atten­ti­on is paid to this, even after a sin­gle ope­ra­ti­on on the ova­ry the­re can be irrepa­ra­ble dama­ge. Or a deve­lo­ping ade­no­myo­sis can stron­gly influ­ence the chan­ces of pregnan­cy and also the pregnan­cy complications.

From our point of view, the­se are unfor­tu­n­a­te­ly serious rea­sons to tre­at endometriosis.

On the other hand, the­re are side effects

Many women com­p­lain of spot­ting, espe­cial­ly with the well-known pro­ge­s­to­gen-only pre­pa­ra­ti­on “Dieno­gest”. The­se are often asso­cia­ted with pain. This is not in its­elf a side effect, but an inef­fec­ti­ve effect, becau­se then your ova­ries are stron­ger than the pro­ge­s­tin. They can­not be “put to sleep”, so to speak, and the hor­mo­nal down­re­gu­la­ti­on is ina­de­qua­te, the ova­ry is acti­ve, forms fol­licles which then also form est­ro­gens, the mucous mem­bra­ne in the ute­rus builds up a litt­le and the­re is blee­ding. This can be seen by using the ultra­sound to look for func­tio­n­al signs on the ova­ries and the thic­kness of the mucous mem­bra­ne in the ute­rus. In this case it makes sen­se to incre­a­se the dose (1–0‑1), or if the blee­ding does not stop after 7 days, take a break of 7 days so that the mucous mem­bra­ne can bleed off. Then it starts again. If this is the case, it is under­stand­a­b­ly not nice and also not use­ful and so not medi­cal­ly con­si­de­red. So the lon­ger you try, the more likely this blee­ding will stop. Ulti­mate­ly, the goal is to be blee­ding-free. The effec­ti­ve­ness of the drug on endo­me­trio­sis can only be che­cked if one is bleeding-free.

Now we come to the real side effects, the­se can be pro­ge­s­tin-rela­ted side effects, we all know how we feel befo­re our days, even if the natu­ral pro­ge­s­tin pre­do­mi­na­tes in the body: impu­re skin, mood swings up to depres­si­on, water reten­ti­on, bre­ast jokes, you have to weigh up for yourself, you should­n’t stop taking the medi­ca­ti­on too has­ti­ly, this usual­ly ends after 3–4 mon­ths for many pati­ents. If the side effects out­weigh the bene­fits, we can look for other ges­ta­gens that are bet­ter tole­ra­ted. In Ger­ma­ny only the “Dieno­gest” is appro­ved for the tre­at­ment of endo­me­trio­sis, which means that it is paid for by the health insuran­ce com­pa­ny, others are not and are then avail­ab­le as off-label use.

In princip­le, you can also take com­bi­ned pre­pa­ra­ti­ons such as the pill, which then try ethinyl­es­tra­di­ol and dieno­gest (in the same dosa­ge as dieno­gest mono). Here, the tole­ran­ce is in some cases signi­fi­cant­ly bet­ter, but on the other hand the­re is the est­ro­gen con­tent in the pre­pa­ra­ti­on, which we do not real­ly know in the long term whe­ther it also has a growth effect on endo­me­trio­sis cells. The­re­fo­re, pro­ge­s­tin mono­the­ra­py is cur­r­ent­ly to be regar­ded as the first choice when initia­ting hor­mo­ne the­ra­py and then other pre­pa­ra­ti­ons as the second choice.

Most important to us, howe­ver, is your qua­li­ty of life. So if hor­mo­nes (sys­temi­cal­ly, i.e. as a tablet) are not tole­ra­ted, it is dif­fi­cult, but the­re are ways here too. That must then be cla­ri­fied indi­vi­du­al­ly. But first of all it is important that you under­stand the princip­le and thus find your own atti­tu­de towards it.

Then you can, for examp­le, con­si­der a local hor­mo­nal the­ra­py with a pro­ge­s­tin-con­tai­ning IUD (LNG IUD). This is pla­ced in the ute­rus. It relea­ses the hor­mo­ne local­ly, it only pas­ses into the blood to a very small extent (it can be detec­ted in the blood, but the con­cen­tra­ti­on is not high enough to influ­ence the cycle, i.e. the cycle per­sists). Many women who suf­fer from sys­temic hor­mo­nal the­ra­pies, espe­cial­ly depres­si­on, cope much bet­ter with the IUD. Excep­ti­ons pro­ve the rule, but it’s defi­ni­te­ly worth a try !!!

The avail­ab­le stu­dies on endo­me­trio­sis are limi­ted. The LnG-con­tai­ning IUD is appro­ved for the pre­sence of hyper­menor­r­hea (very hea­vy mens­tru­al blee­ding) and this is what many women with ade­no­myo­sis ute­ri have and the­re­fo­re this can also bring about a very good impro­ve­ment in this regard. The effect is main­ly local, so mens­tru­al pain is often much bet­ter, so it has litt­le or no effect on seve­re endo­me­trio­sis in the abdo­mi­nal cavity.

The LNG coil is also used as a con­tracep­ti­ve; Pos­si­ble side effects such as inter­mens­tru­al blee­ding, pel­vic pro­blems, acne and bre­ast ten­der­ness are known from this app­li­ca­ti­on. This shows that it pas­ses into the blood to a small extent and that hor­mo­ne-sen­si­ti­ve women in par­ti­cu­lar can react, but as I said, it is worth a try.

It is rare that the ova­ries sim­ply can­not be down­re­gu­la­ted; then, in the case of seve­re pain, the­re is only the opti­on of cen­tral down­re­gu­la­ti­on with GnRh ana­lo­gues (arti­fi­cial meno­pau­se). That sounds ter­ri­ble too, but unfor­tu­n­a­te­ly it is still an effec­ti­ve the­ra­py in such situa­tions. The drug its­elf does not actual­ly have any side effects, it is a repli­ca of the body’s own hor­mo­ne. The admi­nis­tra­ti­on (syrin­ge) con­ti­nuous­ly sti­mu­la­tes the recep­tors and then the cycle comes to the swit­ching point of the hypo­tha­la­mus
suc­cumb, so that then real­ly no more sti­mu­la­ti­on from the brain can take place. The side effects are basi­cal­ly what we want to achie­ve, name­ly a down­re­gu­la­ti­on of the ova­ries, which no lon­ger make a sound. The
lack of est­ro­gen leads to hot flas­hes, sleep and con­cen­tra­ti­on dis­or­ders, all of which we can expect in the meno­pau­se, but not necessa­ri­ly. It is the same with youn­ger women, not all of them have such extre­me side effects, that also depends on the fat store, for examp­le, whe­re est­ro­gens are also for­med. In order to coun­ter­act the side effects, an add-back repla­ce­ment the­ra­py is usual­ly added, that is a small dose of est­ro­gen / pro­ges­te­ro­ne, so that the tre­at­ment is tole­ra­ble. Inde­ed the­re is
some pati­ents who have expe­ri­en­ced signi­fi­cant pain reli­ef and only thus were able to con­trol the pain and for whom long-term the­ra­py is even pos­si­ble. The most important thing here is also to con­si­der bone den­si­ty. Without add back HRT, GnRha may not be given for more than a total of 12 mon­ths. The­re­fo­re we use the add back the­ra­py to coun­ter pos­si­ble effects on the bone.

Watch & Wait

Hor­mo­nal or sur­gi­cal the­ra­py does not always have to be initia­ted immedia­te­ly if endo­me­trio­sis is suspec­ted or if it has alrea­dy been his­to­lo­gi­cal­ly con­fir­med. It makes sen­se to wait and see if you are cur­r­ent­ly plan­ning to have child­ren but have not yet tried to beco­me pregnant. While it is true that child­less­ness is an important issue in endo­me­trio­sis. Nevertheless, almost half of endo­me­trio­sis pati­ents beco­me pregnant spon­ta­ne­ous­ly. Sin­ce the­re is usual­ly no mens­tru­al blee­ding during pregnan­cy and also during the sub­se­quent bre­ast­fee­ding peri­od, the sym­ptoms are often signi­fi­cant­ly alle­via­ted by pregnan­cy. So it makes per­fect sen­se to try whe­ther it works with the spon­ta­ne­ous pregnan­cy. If after a year, des­pi­te regu­lar sexu­al inter­cour­se (at least 2 per week), pregnan­cy has not occur­red, an appoint­ment at a fer­ti­li­ty cen­ter is recom­men­ded and you should also talk to your doc­tor about endo­me­trio­sis sur­ge­ry. Even if you are only slight­ly dis­tres­sed des­pi­te endo­me­trio­sis, you do not need to act immedia­te­ly. In this case, it may be suf­fi­ci­ent to chan­ge one’s life­style in line with the mul­ti­modal the­ra­py con­cept. If you and your atten­ding phy­si­ci­an deci­de on an obser­va­tio­nal con­cept, regu­lar medi­cal check-ups are indicated.

Street clock showing 4:04 p.m. in a black and white photograph.

Re-introduction

Depen­ding on the fin­dings and the the­ra­py that has been deci­ded, a fol­low-up appoint­ment will be arran­ged with you. Sin­ce endo­me­trio­sis is a chro­nic con­di­ti­on, it will stay with you until your meno­pau­se occurs. How often your doc­tors will call you for fol­low-up checks depends on your sta­ge of ill­ness, the the­ra­py cho­sen and your plans and ide­as. It often makes sen­se to pre­sent yourself for a check-up after three mon­ths, when a new the­ra­py con­cept has been estab­lis­hed. In this way it can be found out whe­ther the new the­ra­py will help you or whe­ther the­re are app­li­ca­ti­on pro­blems, for examp­le. A short-term re-pre­sen­ta­ti­on is also recom­men­ded after an ope­ra­ti­on and sub­se­quent the­ra­py. If, on the other hand, you have deci­ded to attempt a spon­ta­ne­ous pregnan­cy, you may not need to see you again until it does not occur spontaneously.

So every time you visit, ask your doc­tor exact­ly when he or she would like to see you next and make an appoint­ment as soon as possible.

Life and ever­y­day life

Endo­me­trio­sis is a dise­a­se that can affect many important are­as of life — from self-este­em as a woman to part­ners­hip, fami­ly and life planning.

In order to find a way to get the best qua­li­ty of life pos­si­ble des­pi­te the sym­ptoms, some decisi­ons have to be made. Good infor­ma­ti­on hel­ps here — about the type of the­ra­py and ways of orga­ni­zing your own life so that the sym­ptoms bur­den your ever­y­day life as litt­le as possible.

Good care and sup­port from a doc­tor with exten­si­ve expe­ri­ence in the dia­gno­sis and tre­at­ment of endo­me­trio­sis is important. Medi­cal atten­dants should also be fami­li­ar with the phy­si­cal and psy­cho­lo­gi­cal stres­ses and social effects of the dise­a­se. It can be hel­pful to get a second opi­ni­on when making dif­fi­cult decisi­ons, such as for or against surgery.

In order to be able to deal with endo­me­trio­sis and its pos­si­ble con­se­quen­ces, good sup­port from fami­ly, part­ner or friends is valu­able. This pre­sup­po­ses that rela­ti­ves are also infor­med about the dise­a­se and have an under­stan­ding of the bur­dens that it brings with it. For some women, the exchan­ge with other affec­ted per­sons in a self-help group also means important sup­port. Others pre­fer to sol­ve their pro­blems for them­sel­ves. It is cru­cial that every woman finds her own way to deal
with the chro­nic disease

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