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.