Endometrio¬≠sis is a chronic, often very painful and dif¬≠fi¬≠cult to treat dis¬≠ease of peo¬≠ple with an uterus. Even though 1 in 10 men¬≠stru¬≠at¬≠ing peo¬≠ple are affected by endometrio¬≠sis, the dis¬≠ease is unknown to many. But Lea is the one! That is why she has made it her pas¬≠sion project to do the often miss¬≠ing edu¬≠ca¬≠tional work in this field and today she tells us about the jour¬≠ney of her dis¬≠ease, the diag¬≠no¬≠sis and the treat¬≠ment options for endometrio¬≠sis. Lea lives together with her boyfriend Philip in Han¬≠nover and is 25 years old. She has been suf¬≠fer¬≠ing from endometrio¬≠sis and ade¬≠no¬≠myosis for almost five years. How¬≠ever, she received her diag¬≠no¬≠sis of endometrio¬≠sis only a few months ago. For a long time she sim¬≠ply thought that what she was expe¬≠ri¬≠enc¬≠ing was quite nor¬≠mal. But it is not! Thank you dear Lea for shar¬≠ing your story so openly in our inter¬≠view and show¬≠ing us what lies behind the term endometriosis!

Diagnose von Endometriose, Endo, endosisters, 1 von 10, leakreissl, Symptome bei Endometriose, Endozyste, Endometriose-Zyste, Endometriose OP, Vulvani

Photo Cred­its: Lea

How was your med­ical his­tory until you were diag­nosed with endometriosis?

It all started with my momen¬≠tous deci¬≠sion to stop tak¬≠ing the birth con¬≠trol pill in 2015. I‚Äôve been on the pill since I was 15, so I‚Äôve been on it for many years. But I always had prob¬≠lems with it ‚Äď espe¬≠cially with ane¬≠mia, because I had unbe¬≠liev¬≠ably heavy bleed¬≠ing over the years. So I stopped tak¬≠ing the pill in 2015, when I was 20, and had inserted a three-year hor¬≠mone IUD, the Jay¬≠dess. And that‚Äôs when the trou¬≠ble started‚Ķ

The fact that the extent of my pain was not even close to nor¬≠mal did not occur to me for many years.

Sim­ply severe men­strual pain?

The first period with Jay¬≠dess was a real pain night¬≠mare ‚Äď and I didn‚Äôt even real¬≠ize the first time that this pain was related to my period. It got to the point where Philip would have pre¬≠ferred to drive me to the hos¬≠pi¬≠tal if the roads hadn‚Äôt been com¬≠pletely icy. But as quickly as the pain came, it dis¬≠ap¬≠peared again. I went to my fam¬≠ily doc¬≠tor any¬≠way ‚Äď but he couldn‚Äôt help me. On my next period the same thing hap¬≠pened again. Then it started to click: I seem to be suf¬≠fer¬≠ing from men¬≠strual pain now. I thought it was just because of the other hor¬≠mones and I would have to live with it. But the fact that the extent of my pain was not even close to nor¬≠mal did not occur to me for many years.

When the cyst persists…

Three years later, dur¬≠ing which I sim¬≠ply lived with it some¬≠how, I had a new hor¬≠mone IUD inserted ‚Äď this time for five years. At the oblig¬≠a¬≠tory check-up three months later, a cyst was dis¬≠cov¬≠ered in my right ovary. The first thing they told me was not to worry about it and that it would prob¬≠a¬≠bly just dis¬≠ap¬≠pear on its own. At the next check-up three months later, it was still there and three months later it was still there.

Endometrio¬≠sis what? I had no idea what she meant by that or what it was.

The pos¬≠si¬≠bilty of hav¬≠ing endometriosis 

At this point, my gynae¬≠col¬≠o¬≠gist expressed the pos¬≠si¬≠bil¬≠ity that this could be an endometrio¬≠sis cyst. Endometrio¬≠sis what? I had no idea what she meant by that or what it was. So after I gave her a blank stare, she explained to me what endometrio¬≠sis is and how it shows itself. For the first time I thought that my severe pain might not be so nor¬≠mal after all. So I told her about it and that rein¬≠forced my gynaecologist‚Äôs assump¬≠tion. Endometrio¬≠sis can only be diag¬≠nosed with the help of a laparoscopy, she explained to me ‚Äď but she did not imme¬≠di¬≠ately advise me to have surgery. First she gave me a brochure and encour¬≠aged me to dive into the sub¬≠ject a lit¬≠tle and then come back in three months for another check-up. 

Is a surgery advisable? 

Said and done. At home I read about the sub¬≠ject with my boyfriend Philip, who is an incred¬≠i¬≠ble sup¬≠port in all of this, and thought about whether I would want to undergo surgery. At that time the pain was only extreme dur¬≠ing my period and oth¬≠er¬≠wise I had fewer prob¬≠lems. How¬≠ever, some¬≠how I just wanted to know what was going on with my body, so I con¬≠sid¬≠ered the oper¬≠a¬≠tion more and more, but wanted to wait for the next appointment.

Sud¬≠denly I was hav¬≠ing pain every day 

How¬≠ever, just a few weeks after the last appoint¬≠ment my pain gets worse and worse quickly until it is there every day. So I return to my gynae¬≠col¬≠o¬≠gist again well before the next check-up appoint¬≠ment, I couldn‚Äôt stand it any longer. It turns out that my cyst has grown con¬≠sid¬≠er¬≠ably and mean¬≠while expand¬≠ing my ovary a lot. She now also rec¬≠om¬≠mends me to have undergo surgery to remove the cyst, to have the diag¬≠no¬≠sis and to pos¬≠si¬≠ble remover fur¬≠ther endometrio¬≠sis lesions directly. 

Diag­no­sis of endometrio­sis and adenomyosis

I receive my trans¬≠feral let¬≠ter for the surgery from her and a rec¬≠om¬≠men¬≠da¬≠tion for an out¬≠pa¬≠tient clinic ‚Äď it is now August 2019. Many weeks will pass before the pre¬≠lim¬≠i¬≠nary con¬≠sul¬≠ta¬≠tion for the surgery, which will not take place until Sep¬≠tem¬≠ber. Then again many weeks later, in Novem¬≠ber 2019, I have my appoint¬≠ment for the endometrio¬≠sis surgery. Dur¬≠ing this surgery I will be diag¬≠nosed with endometrio¬≠sis and also ade¬≠no¬≠myosis, which unfor¬≠tu¬≠nately is inop¬≠er¬≠a¬≠ble. In addi¬≠tion to the cyst, which was actu¬≠ally an endometrio¬≠sis cyst, I had more endometrio¬≠sis len¬≠sions in my abdomen. For¬≠tu¬≠nately all of them could be removed. Unfor¬≠tu¬≠nately, how¬≠ever, the cyst could only be par¬≠tially removed, because oth¬≠er¬≠wise my ovary would have been damaged. 

Diagnose von Endometriose, Endo, endosisters, 1 von 10, leakreissl, Symptome bei Endometriose, Endozyste, Endometriose-Zyste, Endometriose OP, Vulvani

Photo Cred­its: Lea

Diagnose von Endometriose, Endo, endosisters, 1 von 10, leakreissl, Symptome bei Endometriose, Endozyste, Endometriose-Zyste, Endometriose OP, Vulvani

What are your symptoms?

Before I had my endometrio¬≠sis cyst, my main symp¬≠tom was con¬≠trac¬≠tion-like pain just before and dur¬≠ing my period. Because of the pain, cold sweat, cir¬≠cu¬≠la¬≠tory prob¬≠lems and nau¬≠sea up to vom¬≠it¬≠ing from pain often fol¬≠lowed. There were, how¬≠ever, var¬≠i¬≠ous other symp¬≠toms with which I strug¬≠gled and still strug¬≠gle. This includes things like severe ten¬≠sion espe¬≠cially in the (lower) back due to poor pos¬≠ture caused by the pain, exhaus¬≠tion, fatigue, sleep dis¬≠or¬≠ders, mood swings, mus¬≠cle pain and so on ‚Äď the list is long. Whether all of this orig¬≠i¬≠nates directly from endometrio¬≠sis? Of course I can¬≠not say that for sure. Maybe it has some¬≠thing to do with the hor¬≠mones or with the fact that my body is sim¬≠ply fight¬≠ing against some¬≠thing permanently. 

What treat­ment options have you tried since your diag­no­sis of endometriosis?

Since my surgery was less than a year ago, I have not yet tried much. After my surgery I was first pre¬≠scribed the Visanne, a prog¬≠estin birth con¬≠trol pill. At first I was scep¬≠ti¬≠cal and not a fan of it, as there were good rea¬≠sons why I had stopped tak¬≠ing the pill. I actu¬≠ally didn‚Äôt want to start again. But on the other hand, there was the option that my ovary would be destroyed by the endometrio¬≠sis, if I did not take action after the surgery. So I decided to take hor¬≠mones and I‚Äôm still tak¬≠ing them. 

When the endometrio¬≠sis cyst comes back‚Ķ

To be hon¬≠est, how¬≠ever, I am not quite con¬≠vinced of this at the moment, as my endometrio¬≠sis cyst was already back only a few weeks after the surgery. So right now I have to sched¬≠ule a check-up every three months to see what hap¬≠pens to it. But I still hope that my hor¬≠mones will take a lit¬≠tle longer to kick in and that the cyst will get smaller in the long run and per¬≠haps even dis¬≠ap¬≠pear com¬≠pletely. How¬≠ever, some¬≠times I find it hard to believe this ‚Äď I hon¬≠estly have to admit that. 

What are your expe­ri­ences with doctors?

I hon¬≠estly have to say that I am incred¬≠i¬≠bly lucky with my doc¬≠tor. That some¬≠one sus¬≠pects endometrio¬≠sis from a cyst is, I think, rather rare. I always hear sto¬≠ries that peo¬≠ple with endometrio¬≠sis are not taken seri¬≠ously at all ‚Äď but with me it was com¬≠pletely dif¬≠fer¬≠ent! When¬≠ever I have some¬≠thing that seems strange to me, I can come in for a med¬≠ical con¬≠sul¬≠ta¬≠tion imme¬≠di¬≠ately, even though they are always fully booked. I am never dis¬≠missed, even if I am some¬≠times unsure myself, I am always taken seri¬≠ously. So far, I have not had any bad expe¬≠ri¬≠ences with other doc¬≠tors regard¬≠ing endometrio¬≠sis, but I am really lucky that I am always taken seriously!

Diagnose von Endometriose, Endo, endosisters, 1 von 10, leakreissl, Symptome bei Endometriose, Endozyste, Endometriose-Zyste, Endometriose OP, Vulvani

Photo Cred­its: Lea

Thank you sooo much, dear Lea!

If you have other ques¬≠tions about endometrio¬≠sis or would like to learn more about the dis¬≠ease and liv¬≠ing with endometrio¬≠sis, I can highly rec¬≠om¬≠mend Lea‚Äôs blog, Insta¬≠gram and YouTube chan¬≠nel! And if you are suf¬≠fer¬≠ing from endometrio¬≠sis your¬≠self, feel free to tell us about your per¬≠sonal expe¬≠ri¬≠ences or your stroy about the diag¬≠no¬≠sis of endometrio¬≠sis in the comments. 

Britta Wiebe, CEO, female founder, weibliche Gr√ľnderin, Vulvani
Britta 
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.