What I've learned after +10 years from my endometriosis diagnosis

What I've learned after +10 years from my endometriosis diagnosis

I had period pains all my life. During my teenage years doctors said things will gradually get better, then they prescribed me some birth control pills that gave me anxiety and all sorts of problems, and then, during my mid ‘20s, I first heard the name “endometriosis”.



I have been through a lot: a year of almost constant bleeding, a week to a public hospital where no one knew the source of my fever and some suggested endometriosis was to blame but had no idea what solution to give me, a surgery in 2014, another surgery in 2016 (including bowel resection) and a lot of articles written on this topic.

Now, at 5 years after my latest (hopefully my last) surgery, I would want to share with you my thoughts. You either are the beginning, or you are a “veteran” like me, maybe you will find it useful.

1). Don’t waste time!

There are few doctors specialized in endometriosis. Find them, read about them, ask for opinions about them from actual patients, not just group posts, read interviews with them, watch videos with them and then schedule an appointment with 1-2 of them.

Maybe you are just an endometriosis suspect or you have a high stage endometriosis, it does not matter, go to the best!

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2). Endometriosis is not just about infertility

A thing that still pisses me off! I keep hearing celebrities who have endometriosis and brag about getting pregnant with such a severe endometriosis.

Well, excuse me, but with a right endometriosis surgeon, with a right IVF doctor (a fertility specialist) and with money, many women with endometriosis can become pregnant.

I am still amazed that doctors, including doctors from my country, Romania, do not talk more often about the severe implications of endometriosis and how can it even threaten the disease.

3). We will not change opinions or directions

Did I seem outraged on the above topic? Well, yes, I was, but now I am back on track because no matter what we believe, we cannot change opinions, topics or directions regarding endometriosis.

Does your female colleague think endometriosis is just bad period pain? Well, I used to think we can advocate and teach women about it, but no. You don’t have it, you don’t fully understand it and maybe it is better this way, I don’t know.

Does endometriosis mean also nodules, a low quality of life, can it also threaten life? Yes, but talking about infertility, babies and dreams came true is way more striking (and beautiful) than saying “if you are not going to treat endometriosis, you could end up not being able to go to the bathroom.

4). Diet is important. Supplements are important. Birth control pills might work for some

For me, birth control pills were a disaster. A complete disaster, but I know there are a lot of you who take it. My doctor recommends them even if doctors too admit they are not a salvation or a quarantee.

Therefore I learnt not to entirely blame them – or, at least, to keep my opinion for me.

READ ALSO "MRI FOR ENDOMETRIOSIS - MY EXPERIENCE"

Diet and supplements, on the other hand, were my salvation during those years. I do believe they are the key. Believe me, I cheated. During the  pandemic I started to eat so many “wrong food”, I neglected my Calcium D Glucarate for lowering estrogen, I haven’t taken my Omega 3 Triple Strength anymore. I was ok in the first month, in the second, but then boom, the pains, spotting and all sort of symptoms appeared.

After I got back on track, after a while I forgot about endometriosis.

Still, keep in mind there are several important factors too: I had excision surgery and then started my diet & supplements plan. I was stage 4 endometriosis, so, in my opinion, I had to be ok on in inside before proceeding to the natural way.

5). Every time you will want to help, someone will point fingers at you

Wow, but you are not a doctor, how can you have an opinion? So what you are an editor and you’ve read so many studies, made interviews with doctors? You are not a specialist, so you are not allowed to talk! You can do more harm then good!

Believe me, if all the endometriosis patients had been silent, today doctors (all sort of them), would not have known what to prescribe on those “diet and supplements plans”.
Yes, I admit you have to read the label, to ask your family doctor, to start slowly, to listen to your body – but all good things that are now in this “endometriosis natural management way” came from the patients.

6). Keep on going, no matter what!

As a continuation of the above idea, keep on going, no matter what! People will blame you, will do all sort of things, it does not matter.
You are not doing it for x patient or y patient, you do it because you feel it do it.
If you don’t feel it, great! This is also right.

7). There are things worse than endometriosis, medically speaking

Medically speaking, there are a lot of other problems, wrong tests, other investigations to do that have nothing to do with endometriosis and you realize they are way worse than endometriosis.
Therefore, if you can, be happy this is your only health problem.



8). Endometriosis changes you

Endometriosis has to change you! It came to change me/you. Maybe because there was no other way for you to do that. Just like when you like a boy and he gives you mixed signals and you keep on talking to him and you are able to stop this only when you know he is with someone else.

Just like this, endometriosis is that “someone else” who forces you to change – yourself, your life, your everything.

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9). A magical pill/treatment for curing endometriosis? Never!

Don’t full yourself reading those studies about genes involved in developing endometriosis and how these studies could lead to a magical, final treatment!

Endometriosis has a genetic factor, but this is not the only one involved. There are way too many other aspects to be considered. Besides, how will you change yourself, if a magical pill would take all your problems away?

I really believe endometriosis is a karmic lesson, so, at least 1-2 generations from now on, will not have such “pill” on the menu.



10). It’s ok to (want) to forget about endometriosis

I had such break and it was very nice: to be healthy, to have some other activities, to forget endometriosis. But as I am an editor, I returned to my “passion”. Still, for other patients, could be different. So, at least you are ok, don’t blame yourself for leaving that group, not wanting to discuss about it with your family, friends or colleagues. It is your choice.
Yet, don’t ever forget about checking your doctor at least once a year.

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Author Marina Rasnoveanu Marina's articles Marina Rasnoveanu

Editor, Endometriosis patient, but very well now thanks to my doctor and my way of living. I am passionate about health & healthy living, writing and researching a lot in the past years on these topics. Here I will write articles, recipes, interviews, studies and all sorts of materials about dieting, endometriosis and health.

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