Endometrio­sis is a chronic, often very painful and dif­fi­cult to treat dis­ease of peo­ple with an uterus. Even though 1 in 10 men­stru­at­ing peo­ple are affected by endometrio­sis, the dis­ease is unknown to many. But Lea is the one! That is why she has made it her pas­sion project to do the often miss­ing edu­ca­tional work in this field and today she tells us about the jour­ney of her dis­ease, the diag­no­sis and the treat­ment options for endometrio­sis. Lea lives together with her boyfriend Philip in Han­nover and is 25 years old. She has been suf­fer­ing from endometrio­sis and ade­no­myosis for almost five years. How­ever, she received her diag­no­sis of endometrio­sis only a few months ago. For a long time she sim­ply thought that what she was expe­ri­enc­ing was quite nor­mal. But it is not! Thank you dear Lea for shar­ing your story so openly in our inter­view and show­ing 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 momen­tous deci­sion to stop tak­ing the birth con­trol pill in 2015. I’ve been on the pill since I was 15, so I’ve been on it for many years. But I always had prob­lems with it – espe­cially with ane­mia, because I had unbe­liev­ably heavy bleed­ing over the years. So I stopped tak­ing the pill in 2015, when I was 20, and had inserted a three-year hor­mone IUD, the Jay­dess. And that’s when the trou­ble started…

The fact that the extent of my pain was not even close to nor­mal did not occur to me for many years.

Sim­ply severe men­strual pain?

The first period with Jay­dess was a real pain night­mare – and I didn’t even real­ize the first time that this pain was related to my period. It got to the point where Philip would have pre­ferred to drive me to the hos­pi­tal if the roads hadn’t been com­pletely icy. But as quickly as the pain came, it dis­ap­peared again. I went to my fam­ily doc­tor any­way – but he couldn’t help me. On my next period the same thing hap­pened again. Then it started to click: I seem to be suf­fer­ing from men­strual pain now. I thought it was just because of the other hor­mones and I would have to live with it. But the fact that the extent of my pain was not even close to nor­mal did not occur to me for many years.

When the cyst persists…

Three years later, dur­ing which I sim­ply lived with it some­how, I had a new hor­mone IUD inserted – this time for five years. At the oblig­a­tory check-up three months later, a cyst was dis­cov­ered in my right ovary. The first thing they told me was not to worry about it and that it would prob­a­bly just dis­ap­pear on its own. At the next check-up three months later, it was still there and three months later it was still there.

Endometrio­sis what? I had no idea what she meant by that or what it was.

The pos­si­bilty of hav­ing endometriosis 

At this point, my gynae­col­o­gist expressed the pos­si­bil­ity that this could be an endometrio­sis cyst. Endometrio­sis 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 endometrio­sis is and how it shows itself. For the first time I thought that my severe pain might not be so nor­mal after all. So I told her about it and that rein­forced my gynaecologist’s assump­tion. Endometrio­sis can only be diag­nosed with the help of a laparoscopy, she explained to me – but she did not imme­di­ately advise me to have surgery. First she gave me a brochure and encour­aged me to dive into the sub­ject a lit­tle and then come back in three months for another check-up. 

Is a surgery advisable? 

Said and done. At home I read about the sub­ject with my boyfriend Philip, who is an incred­i­ble sup­port in all of this, and thought about whether I would want to undergo surgery. At that time the pain was only extreme dur­ing my period and oth­er­wise I had fewer prob­lems. How­ever, some­how I just wanted to know what was going on with my body, so I con­sid­ered the oper­a­tion more and more, but wanted to wait for the next appointment.

Sud­denly I was hav­ing pain every day 

How­ever, just a few weeks after the last appoint­ment my pain gets worse and worse quickly until it is there every day. So I return to my gynae­col­o­gist again well before the next check-up appoint­ment, I couldn’t stand it any longer. It turns out that my cyst has grown con­sid­er­ably and mean­while expand­ing my ovary a lot. She now also rec­om­mends me to have undergo surgery to remove the cyst, to have the diag­no­sis and to pos­si­ble remover fur­ther endometrio­sis lesions directly. 

Diag­no­sis of endometrio­sis and adenomyosis

I receive my trans­feral let­ter for the surgery from her and a rec­om­men­da­tion for an out­pa­tient clinic – it is now August 2019. Many weeks will pass before the pre­lim­i­nary con­sul­ta­tion for the surgery, which will not take place until Sep­tem­ber. Then again many weeks later, in Novem­ber 2019, I have my appoint­ment for the endometrio­sis surgery. Dur­ing this surgery I will be diag­nosed with endometrio­sis and also ade­no­myosis, which unfor­tu­nately is inop­er­a­ble. In addi­tion to the cyst, which was actu­ally an endometrio­sis cyst, I had more endometrio­sis len­sions in my abdomen. For­tu­nately all of them could be removed. Unfor­tu­nately, how­ever, the cyst could only be par­tially removed, because oth­er­wise 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 endometrio­sis cyst, my main symp­tom was con­trac­tion-like pain just before and dur­ing my period. Because of the pain, cold sweat, cir­cu­la­tory prob­lems and nau­sea up to vom­it­ing from pain often fol­lowed. There were, how­ever, var­i­ous other symp­toms with which I strug­gled and still strug­gle. This includes things like severe ten­sion espe­cially in the (lower) back due to poor pos­ture caused by the pain, exhaus­tion, fatigue, sleep dis­or­ders, mood swings, mus­cle pain and so on – the list is long. Whether all of this orig­i­nates directly from endometrio­sis? Of course I can­not say that for sure. Maybe it has some­thing to do with the hor­mones or with the fact that my body is sim­ply fight­ing against some­thing 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 pre­scribed the Visanne, a prog­estin birth con­trol pill. At first I was scep­ti­cal and not a fan of it, as there were good rea­sons why I had stopped tak­ing the pill. I actu­ally didn’t want to start again. But on the other hand, there was the option that my ovary would be destroyed by the endometrio­sis, if I did not take action after the surgery. So I decided to take hor­mones and I’m still tak­ing them. 

When the endometrio­sis cyst comes back…

To be hon­est, how­ever, I am not quite con­vinced of this at the moment, as my endometrio­sis cyst was already back only a few weeks after the surgery. So right now I have to sched­ule a check-up every three months to see what hap­pens to it. But I still hope that my hor­mones will take a lit­tle longer to kick in and that the cyst will get smaller in the long run and per­haps even dis­ap­pear com­pletely. How­ever, some­times I find it hard to believe this – I hon­estly have to admit that. 

What are your expe­ri­ences with doctors?

I hon­estly have to say that I am incred­i­bly lucky with my doc­tor. That some­one sus­pects endometrio­sis from a cyst is, I think, rather rare. I always hear sto­ries that peo­ple with endometrio­sis are not taken seri­ously at all – but with me it was com­pletely dif­fer­ent! When­ever I have some­thing that seems strange to me, I can come in for a med­ical con­sul­ta­tion imme­di­ately, even though they are always fully booked. I am never dis­missed, even if I am some­times unsure myself, I am always taken seri­ously. So far, I have not had any bad expe­ri­ences with other doc­tors regard­ing endometrio­sis, 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 ques­tions about endometrio­sis or would like to learn more about the dis­ease and liv­ing with endometrio­sis, I can highly rec­om­mend Lea’s blog, Insta­gram and YouTube chan­nel! And if you are suf­fer­ing from endometrio­sis your­self, feel free to tell us about your per­sonal expe­ri­ences or your stroy about the diag­no­sis of endometrio­sis in the comments. 

Britta Wiebe, period education, 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.