In the second part of our interview, Lea tells us how living with endometriosis changes everything and what helps her in her everyday life. You can read the first part of the interview with Lea here
How do you feel about living with endometriosis?
I have come to terms with my endometriosis. It is a part of me that will accompany me for a very long time. That’s why I can’t fight against it forever and have accepted it as it is. She is just my silent companion who gets loud from time to time and brings me to my knees. But that’s ok for me, I can handle it.
How does endometriosis affect your everyday life?
In the beginning endometriosis affected my everyday life a lot. I thought about it all the time and had a hard time pushing it away. In the meantime, however, I try to focus on the here and now and speculate less about future contingencies that may never happen. That helps me a lot! Of course, this is often difficult due to the everyday pain and problems, but I have now found quite good ways to focus on something else.
Endometriosis often limits activities, but I, or rather we, have come to terms with that and I am no longer annoyed when it throws a spanner in the works. In the end, I didn’t choose all this and I can’t change much about it. But I can influence how I deal with it and whether I let it drag me down – and I try to stay positive as much as possible, no matter what happens.
Are there any daily habits that help you live with endometriosis more comfortably?
My pain is chronic and therefore almost daily. At first it was hard for me. Most of the time I did nothing, stayed on the sofa because I wasn’t feeling well. But that didn’t make it any better, in fact it sometimes made it worse. That’s why I decided at some point that I can’t put my life on hold forever. Therefore, I returned to sports: horseback riding, going for walks, yoga. Especially when I am in pain. Of course, it’s often hard for me to get on the horse and do jumping or dressage training when everything hurts. There have been times when I just couldn’t do it. Often times it helps me to focus completely on something else. On bad days I do something light, just go for a walk or do a relaxed yoga session. On better days I like to do more.
I have always been keen on my diet, also before the diagnosis, anyway, so I honestly haven’t adjusted anything yet. I’ve been doing intermittent fasting for several years now, which means I fast for at least 16 hours every day. Most of the time, the food is then concentrated on one very large but healthy meal in the evening. Lots of salad and vegetables, some fish and cheese, hardly any meat and generally almost no products containing gluten. However, I don’t let myself be deprived of sweets from time to time. Since my diagnosis, I have also considered eliminating or replacing dairy products, but I failed. Coffee with organic milk simply tastes much better to me than with almond/oat or rice milk. In addition to that, I have also considered a completely anti-inflammatory diet, but so far I haven’t implemented it.
How has your life changed since your diagnosis?
Of course, living with endometriosis has slowed down a lot of things. My studies have been kind of on hold for a while because I just can’t really get on with it. Nevertheless there are also positive sides: I’ve become much more open – I think that’s also the biggest change. I never thought I would be able to talk so openly about my illness, but it helps me and so many others. I get a lot in return, a lot of gratitude and appreciation, sometimes from complete strangers – that encourages me to do the right thing. Moreover I get an incredible amount of understanding from friends because I talk about it so openly. Everyone knows where they stand. That often makes things easier for me.
Through endometriosis and the educational work that I am now trying to do, I have found something that I believe in, that gives me meaning and is incredibly fun – and that is worth a lot.
What inspired you to create your blog?
When I first suspected I had endometriosis, I scoured the entire internet for information. Scientific articles, studies, YouTube channels, blogs, Instagram accounts – I probably know them all. But still, there was usually something missing for me: sometimes a detailed description or a personal insight or a medical explanation. Therefore, I quickly had the thought that I would like to fill exactly this gap. That’s how my blog and then also my Youtube channel came into being.
Do you have any tips or ideas on how friends + family can help someone living with endometriosis?
I think the most important thing I can say is: try to understand us and take us seriously! The worst thing is when someone dismisses what you’re going through or doesn’t show understanding when we sometimes can’t do what we’d like to do. Living with endometriosis can be a huge burden – everyone deals with it differently. Try to be sensitive to those affected, listen to what they have to say or even accept it if they don’t want to say anything about it. It is not easy, I know that myself. But it takes a lot of pressure off when you know that there is someone you can rely on, who takes you seriously and understands what is going on.
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