Pu­blished: 14. Sep­tember 2022 | Up­dated: 14. De­cember 2023 Author: Chris­toph Müller-Gun­trum | Re­viewed by Chris­toph Müller-Gun­trum

My journey to a child de­spite en­do­me­tiosis — In­ter­view with Julia

Julia Leistner is just 23 years old and al­ready looks back on an eleven-year long history of suf­fe­ring. It was only a year and a half ago that she found out the real re­ason for her con­tinued pain: en­do­me­triosis, grade III. For the newly mar­ried stu­dent, the fact that she still ma­naged to get pregnant bor­ders on a small mi­racle. In the in­ter­view, she tells of hurtful comm­ents and mis­dia­gnoses she had to en­dure over the years — but also how en­do­me­triosis ch­anged not only her de­sire to have children, but also in­fluenced her career path. You can read Ju­lia’s he­art­felt per­sonal story, but also her so­cial de­mands, here:

Hi Julia, you are now in the final tri­mester of your pregnancy. How are you doing?

“The last weeks have started and are gra­du­ally ma­king them­selves felt with back pain, sym­physis loo­seness, he­artburn, a con­stant urge to uri­nate and the odd spi­rited kick in my ribs. Of course, the ex­ci­te­ment about the de­li­very and the first time with the baby is also in­cre­asing day by day.

But de­spite all the phy­sical and emo­tional sen­si­ti­vi­ties, I have to say that I’m doing much better at the mo­ment than I nor­mally do when the en­do­me­triosis-as­so­ciated com­plaints com­pli­cate my ever­yday life. Pregnancy was the first time I re­ally be­came aware of how bad I ac­tually feel in ‘normal life’. Alt­hough the last few months have de­fi­ni­tely not been easy for me.”

In what way is your pregnancy a small mi­racle?

“In No­vember 2020, I was dia­gnosed with en­do­me­triosis after un­der­going a la­pa­ro­scopy. My right fallo­pian tube was com­ple­tely in­flamed and im­per­meable. In ad­di­tion, a few weeks later I learned that my AMH level* was below one, which was far too low for my age (21 at the time). My gy­nae­co­lo­gist as well as other en­do­me­triosis and fer­ti­lity spe­cia­lists I con­sulted in the fol­lo­wing months, agreed that in my spe­cific case it could be quite dif­fi­cult to achieve a spon­ta­neous pregnancy wi­t­hout me­dical sup­port. And yet, al­most exactly one year after my en­do­me­triosis dia­gnosis, I held a po­si­tive pregnancy test in my hand — wi­t­hout ar­ti­fi­cial in­se­mi­na­tion or any other me­dical sup­port. No one ex­pected it, least of all me.”

*AMH value = anti-Mül­le­rian hor­mone

The level can be tem­po­r­a­rily low shortly after an ope­ra­tion — for ex­ample after a cyst re­m­oval — but as this tissue hda not been af­fected in my case, my doctor could not ex­plain this low level.

Julia Leistner - Fertilly

First: Con­gra­tu­la­tions on your pregnancy! Could you out­line your ex­pe­ri­ence with en­do­me­triosis for us?

“I had my first mens­trua­tion in the fourth grade at the age of ten, which is ty­pical for many en­do­me­triosis suf­fe­rers. From the be­gin­ning, very se­vere lower ab­do­minal pain ac­com­pa­nied me every month. It was not un­common for me to be unable to go to school or go about my daily life be­cause of it, which in ad­di­tion had al­ready put an im­mense emo­tional strain on me at the time.

Over the years, more and more sym­ptoms came along. What I thought for years was ir­ri­table bowel syn­drome, bladder in­fec­tions, a poor im­mune system and ge­neral hy­per­sen­si­ti­vity fi­nally made sense with the dia­gnosis. But until I was even­tually taken se­riously, I had to en­dure a lot of igno­rance for eleven years. The choice of words may sound dra­matic at first, but I was de­prived of a not in­con­siderable part of my child­hood and youth by doc­tors, te­a­chers, fa­mily mem­bers and fri­ends who re­pea­tedly sug­gested that I was too sen­si­tive, too weak. Hardly an­yone could un­der­stand what was going on in my body — at some point not only du­ring my pe­riod, but cycle-in­de­pen­dent, in my case every day. Of course, these hurtful state­ments were also made out of their igno­rance and were cer­tainly in the least cases of ma­li­cious in­tent, but many sen­tences are un­fort­u­na­tely for­ma­tive for me to this day.

I first came across the term “en­do­me­triosis” in the summer of 2020. Soon after a short re­se­arch, I had the fee­ling that this could de­fi­ni­tely apply to me, after all, my sym­ptoms were text­book: chronic lower ab­do­minal pain, di­ar­rhoea, pain when uri­na­ting, pain du­ring and after se­xual in­ter­course, food in­to­le­rances, fa­tigue, ex­haus­tion, in­creased sus­cep­ti­bi­lity to in­fec­tions. So I raised my su­s­pi­cions with my gy­nae­co­lo­gist at the time, with whom I had al­ready been re­cei­ving tre­at­ment for eight years and who had never taken my com­plaints se­riously, let alone treated them ap­pro­pria­tely — apart from pre­scribing me the pill as a mi­racle cure, of course, what else. I will never forget her re­ac­tion: “Well, now that you men­tion it … I could have thought of that myself”.

A few weeks later I had an ap­point­ment at a (non-cer­ti­fied) en­do­me­triosis centre in Leipzig. For the first time in my life I felt re­ally taken se­riously in this con­sul­ta­tion. The me­dical history was con­spi­cuous, but the pal­pa­tion and ul­tra­sound ex­ami­na­tions showed no ob­vious fin­dings. Tog­e­ther with the at­ten­ding doctor, I nevert­heless de­cided to make an ap­point­ment for a la­pa­ro­scopy as soon as pos­sible. The sym­ptoms spoke for them­selves and I needed cer­tainty.

I fi­nally had the ope­ra­tion in No­vember 2020. In ad­di­tion to the la­pa­ro­scopy, I also had a ure­tero­scopy and a cysto­scopy, and the per­mea­bi­lity of both my fallo­pian tubes was che­cked. Du­ring the ope­ra­tion, I was dia­gnosed with en­do­me­triosis grade III (out of IV), which cor­re­sponds to mo­de­rate en­do­me­triosis. My uri­nary bladder and right fallo­pian tube were par­ti­cu­larly af­fected.”

How did you feel when you were dia­gnosed with en­do­me­triosis after the sur­gery?

“The ope­ra­ting doctor was at my hos­pital bedside a few hours after the sur­gery and told me about the re­sults. I can’t re­member ever­y­thing be­cause of the after-ef­fects of the an­aes­thetic, but I cried a lot — out of re­lief and fear at the same time. Re­lief be­cause fi­nally, after all these years, it was clear that I wasn’t ima­gi­ning these pains, that I wasn’t too sen­si­tive or even crazy. And fear, be­cause I sud­denly rea­lised that with this cer­tainty came the fact that I was chro­ni­cally ill.”

Did you rea­lise with the dia­gnosis that it would pos­sibly be dif­fi­cult to have a child of your own?

“That’s a ques­tion I still think about a lot today. Be­fore my own dia­gnosis, I was of course ra­tio­nally aware that in­fer­ti­lity is a not in­si­gni­fi­cant sym­ptom of en­do­me­triosis. But at that mo­ment, the de­sire to have children was still such a di­stant topic for me that — per­haps out of nai­vety or self-pro­tec­tion — I hardly thought about the fact that I, of all people, could be af­fected by in­fer­ti­lity.

My partner and I had al­ready been a couple for seven years at that point and knew that we both wanted to have children tog­e­ther at some point, but not yet at 21. For us, the focus was on com­ple­tely dif­fe­rent things. My plan had al­ways been to fi­nish my stu­dies first and to have both feet firmly on the ground in my pro­fes­sional life be­fore I would make a self-de­ter­mined de­cision to start plan­ning for children.

But when the en­do­me­triosis dia­gnosis was con­firmed and the other fin­dings were gra­du­ally added, I slowly rea­lised that I pro­bably shouldn’t go ahead as ori­gi­nally planned if I wanted to have a rea­li­stic chance of ha­ving bio­lo­gical children. I felt robbed of my en­tire life plan. My rea­lity of life ch­anged ra­di­cally wi­thin a few months, and I was in­cre­dibly angry and hel­p­less be­cause this self-de­ter­mi­na­tion was (felt) taken away from me.”

What streng­thened you du­ring this dif­fi­cult time?

“In ad­di­tion to con­ser­va­tive op­tions such as sur­gical en­do­me­triosis re­me­dia­tion and ta­king syn­thetic hor­mones (in my case Dienogest), I de­cided to take a ho­li­stic ap­proach to my sym­ptoms. I sought sup­port in the form of psy­cho­the­rapy, went re­gu­larly to phy­sio­the­rapy and ma­nual the­rapy, and I in­formed myself very in­ten­si­vely on the to­pics of en­do­me­triosis, the de­sire to have children and psy­cho­logy. What also helped me a lot in terms of ac­cep­tance and dealing with the di­sease was the ex­ch­ange with other suf­fe­rers, first via so­cial media and later in ‘real’ life, which re­sulted in some good fri­end­ships.”

Please de­scribe to us how your own child­bea­ring journey un­folded. What fee­lings did you have when your pregnancy test turned out po­si­tive?

“My in­itial de­fen­si­ve­ness about the whole in­fer­ti­lity issue slowly evolved into more of “what if we ac­tually did try?”. I was in a pri­vi­leged po­si­tion of ha­ving (and to this day still have) an in­cre­dibly sup­portive and un­der­stan­ding partner by my side who not only put up with my tan­gled thoughts and fee­lings du­ring this time, but also tried to re­solve them.

He had al­ways wanted to be­come a fa­ther in his mid-20s, which we had been dis­cus­sing hea­tedly from time to time in the years be­fore the dia­gnosis, as I had not been wan­ting to even start plan­ning children for a few years. Ho­wever, when the tide slowly turned and my thoughts of per­haps trying al­ready now be­came more and more con­crete, it was not al­ways easy for him to allow this thought either.

Du­ring this time, we often talked about the sup­posed “per­fect ti­ming”, weighed up bio­lo­gical, so­cial and fi­nan­cial aspects and fi­nally came to the de­cision that after stop­ping the Dienogest* (which I no longer wanted to take due to num­e­rous side ef­fects), we would also no longer use con­tracep­tion. Se­veral doc­tors had pre­pared us for the fact that with my con­di­tions it would be ex­tre­mely dif­fi­cult to get pregnant wi­t­hout me­dical sup­port. The­r­e­fore, neither of us ex­pected that it would ac­tually work.

Three months after stop­ping the hor­mones, my mens­trua­tion stayed away. I didn’t think much of it, after that short amount of time — and after a total of nine years on hor­mones — my cycle wasn’t re­ally re­gular anyway. Nevert­heless, I took a test — the first pregnancy test of my life, by the way — spon­ta­neously in the evening after uni­ver­sity to rule out the pos­si­bi­lity of so­me­thing being wrong. And yet the se­cond line on the test was im­me­dia­tely and un­de­ni­ably vi­sible.

Julia Leistner - Fertilly

I felt both enormous hap­pi­ness and fear at the same time. When you hear over and over again that a spon­ta­neously oc­cur­ring pregnancy is al­most im­pos­sible in your case, then you also know: that this mi­racle in your own body is in­cre­dibly fra­gile and pre­cious, and not to be taken for granted. My fear that the pregnancy would not re­main intact was im­mense, espe­ci­ally in the first months.

Now, with only a few weeks of pregnancy left, I ac­tually feel re­la­tively calm. I also have hardly any con­cerns about the birth but I am ra­ther ex­cited about this unique ex­pe­ri­ence. I am loo­king for­ward to my baby and am in­cre­dibly gra­teful that this mi­racle has found us.”

Your ex­pe­ri­ences have also had an im­pact on your “vo­ca­tion”, right?

“In Oc­tober 2017 I started stu­dying to be­come a grammar school te­a­cher for Eng­lish and ethics . At the mo­ment, I’m pausing my stu­dies for three se­mes­ters due to my pregnancy and pa­rental leave. As my sym­ptoms have been get­ting stronger over the last few years, I have had to ad­just my workload and will the­r­e­fore not be able to com­plete my de­gree in the stan­dard course du­ra­tion time anyway. I am gra­teful that I am able to study at a slower pace and adapt my edu­ca­tion to my ca­pa­ci­ties so that my per­for­mance does not have to suffer. At the same time, I keep won­de­ring how I will be able to work with my sym­ptoms as a te­a­cher later on and me­an­while to live up to my stu­dents ex­pec­ta­tions, but I try to look to the fu­ture op­ti­mi­sti­cally.

En­do­me­triosis has also had a si­gni­fi­cant in­fluence on the choice of my part-time job: since April 2021, I have been working as a stu­dent as­sistant at the En­do­me­triosis As­so­cia­tion Ger­many sup­porting the work in its of­fice. Here I was able to make va­luable cont­acts and learn a lot about the work of the as­so­cia­tion, about the di­sease and also about myself. The work has ac­tually had a he­aling in­fluence on me and my path in life. In a couple of weeks I will em­bark on my ma­te­r­nity leave.”

What does the sup­port of the En­do­me­triosis As­so­cia­tion look like in con­crete terms?

“We offer te­le­phone coun­sel­ling for people suf­fe­ring from en­do­me­triosis and their re­la­tives — re­gard­less of where a pa­tient stands in­for­ma­tion wise: whe­ther the su­spected dia­gnosis has just been re­ceived for the first time or the one has been li­ving with the di­sease for many years. In ad­di­tion, there is of course a big focus on na­ti­on­wide pu­blic edu­ca­tion, co­ope­ra­tions with in­sti­tu­tions in the he­alth and po­li­tical sector as well as on col­la­bo­ra­ting with self-help groups and cli­nics.”

What tips can you give to other women who also suffer from en­do­me­triosis and want to have children? What does in fact help, what sup­ports?

“I think that the ex­ch­ange with other en­do­me­triosis suf­fe­rers has helped me the most. The­r­e­fore, I can only urge every suf­ferer to con­nect with others, be it via In­sta­gram, in a local sup­port group or any other way. I found it tre­men­dously hel­pful to un­der­stand how en­do­me­triosis, the de­sire to have children and the psyche are in­tert­wined. Mo­reover I read lot of books, at­tended on­line events and tried to edu­cate myself on my dia­gnosis to re­ally un­der­stand what’s ac­tually going on in my body and my psyche.”

En­do­me­triosis pa­ti­ents are often not taken se­riously with their sym­ptoms. Many of them have suf­fered for a long time. What do you ex­pect from so­ciety / me­di­cine / po­li­tics in terms of edu­ca­tion? What needs to ch­ange?

“What has had a de­cisive in­fluence on me and my en­do­me­triosis story was the fact that I — as a 21-year-old woman at the time who openly dis­cusses pe­riods and se­xua­lity and who is a person ge­ne­rally edu­cated on those to­pics — learned about the di­sease en­do­me­triosis so late. And this de­spite the fact I was af­fected myself and had been for so many years.

It is frigh­tening how ea­sily so­ciety re­lies on the nar­ra­tive that mens­trua­tion and its as­so­ciated ailm­ents are not ap­pro­priate for pu­blic dis­cus­sion. After all, other chronic ill­nesses have thank­fully been taken se­riously in our so­ciety for a long time — so we know it can work. I hope that in the fu­ture all en­do­me­triosis figh­ters will not have to ju­s­tify them­selves as to why they “act like that” or why they are “so sen­si­tive”. 

We are not sen­si­tive. We are chro­ni­cally ill. Often for many years wi­t­hout kno­wing. The average time until a dia­gnosis is made, takes up seven to ten years in Ger­many. And this is exactly where so­ciety has to start. Po­li­ti­cians in charge have to take ur­gent care of the needs of en­do­me­triosis suf­fe­rers, the cur­ri­cula of the in­di­vi­dual fe­deral states have to be ad­apted and there has to be more than just a short lec­ture on the sub­ject in me­dical school. There still is a lot that needs to be ch­anged, and I am con­fi­dent that every step in the right di­rec­tion, no matter how small, can ul­ti­m­ately bring about pro­gress  — even if it is only the open, de-ta­booed ex­ch­ange in our own com­mu­ni­ties.”

About Julia Leistner:

Julia is 23 years old and just mar­ried her boy­friend, whom she has known for ten years. Julia lives in Leipzig, but is ori­gi­nally from the Vogt­land. She is stu­dying to be­come a te­a­cher and is ex­pec­ting her first child soon.

You can find out more about the work of the En­do­me­triosis As­so­cia­tion Ger­many e.V. on their web­site

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