I am 38 years old now. I had my first endometriosis symptoms at 11 years old, when I experienced my first period. Yet, 2 years before, at my appendicitis surgery, the doctor told my mother I had “weird adhesions in my belly”. Now I strongly believe it was endometriosis. More than 20 years have passed since my first symptoms and I have experienced 2 surgeries, all kind of diet adjustments, plenty of birth control pills but also natural supplements.
Many times, when things were pretty nasty I used to give back time and think what I could have done for me and for my health. What were the changes I could have done earlier in order not to reach that point of colo-rectal surgery?
We cannot give back time but today I can write a letter to the mothers of all teenagers who confront endometriosis. Maybe my advice will be helpful. Maybe they will be able to apply at least some of my recommendations. Maybe this will help those little girls not to suffer the way I did, the way a lot of women suffer these days because doctors still don’t know about endometriosis or because for many people and many cultures “this is the way a woman should live”.
Therefore, here is my top advice for you, the mother of a teenager with endometriosis, the mother of a teenager that might have endometriosis, the mother who has herself been diagnosed with endometriosis and now is afraid that her girl, no matter the age, could experience endometriosis at some point in her life.
1). Believe her!
No matter how much you know right now about endometriosis, don’t ever doubt her pains, even if some doctors tell you “it is not such a big deal”. It is and if your child tells you she is in pains, no matter the reasons, believe her even when no one else does.
When I was a teenager and even a child I had all sort of symptoms and pains and the general opinion was that “I was spoiled”. When my period came it was a little bit better because then I could associate my pains with something and, besides, I have always experienced heavy, painful period. Yet, not even then no one entirely believed me because almost everyone said “that’s the way some women are, it will get better after you are going to marry and have a child”.
Endometriosis becomes “silent”, let’s say in a some remission in those 9 months of pregnancy and the months when a woman is breast-feeding but this is all. Afterwards it can come up even more aggressively.
Therefore, the first most important step for your teenage daughter is to be seen, heard and believed.
2). Read, research and ask questions!
You cannot understand endometriosis without knowing what is it, what are its symptoms and manifestations, what are its risks, what is the standard treatment, what the standard surgery (when needed) implies, what are the diet recommendations and a basic list of supplements that were part of different studies so far.
It might look too much for you but believe me, you have to know all these. Maybe you will be scared in the first place, it does not matter, go on! It is your obligation to know and, at the right time, to explain that topic to your daughter.
Besides, remember not all endometriosis stages are the same, maybe your daughter will not experiment all symptoms, all complications, maybe she will not get to surgery – but in order things not to evolve, you have to know the details and you have to know what is it be done in order to avoid complications.
Besides, please, don’t be that type of woman (and don’t raise your daughter to be one) who, because she is experiencing just minor pains and a small ovarian cyst does not believe in higher and complicated stages of endometriosis.
Once on this path, you are a very important part of the endometriosis awareness journey.
P.S: If you want to read more articles about my endometriois journey, here you have an endometriosis journal with all sort of useful information: https://www.thehealthyjournal.com/en/healthy-stories/endometriosis-journal/
3). Find the best endometriosis specialist in your area!
You want the best for your daughter so don’t wait for the things to become serious in order to search the best endometriosis doctor in your area. Therefore, search a little, ask, search on Facebook groups and google and go to the best specialists!
Seeing such specialist does not mean your daughter is going to be recommended for surgery. A true endometriosis specialist avoids surgery as long as possible, especially when there’s a teenager involved. But this way you will know accurate information from a true specialist and, even more important, you will know how the things are going, medically speaking from our doctor. She needs monitoring and she needs a doctor she can trust.
4). Pay attention to exploratory/diagnosis laparoscopy!
I don’t want to star polemics here. I am just saying my opinion based on +20 years of endometriosis experience and a lot of interviews with doctors over the years.
Of course, the decision is yours, but I want to make myself clear when I say “pay attention from exploratory/diagnosis laparoscopy".
From what I have read on many Facebook groups it appears in many countries, there are many doctors who still believe that, in order to diagnose endometriosis, they have to do an exploratory laparoscopy. Some even recommend surgery at small ovarian cysts.
This is not so in my country, Romania, at least not on top listed endometriosis doctors. Yet, in the first place, many years ago, this was the standard but now many specialists have come to the conclusion there are other means of diagnosing endometriosis.
I myself was diagnosed through medical anamnesis + vaginal ultrasound and then MRI with a protocol for endometriosis. I know this is easier to diagnose for higher stages.
The controversy might arise at endometriosis stage 1 and 2 when the lesions might not be visible during the exams - which can be pretty common at teenagers.
Here, in my country, and not also, when endometriosis is not visible but the symptoms are upsetting, doctors go in managing the symptoms with treatment and several other options – not surgery. For example, if mother has endometriosis, if all the symptoms of the teenagers conclude to endometriosis then the doctors starts a treatment that focuses on the symptoms and monitors the patient.
Part of the reason an exploratory laparoscopy is avoided is that, in endometriosis, you have to go for surgery only when it is absolutely necessary and not having more than 2 endometriosis surgeries in your life time (because of adhesions risks, the lowering of AMH level with every intervention on the ovary etc.).
But, I repeat, I know the opinions are different here, just listen to all the opinions in the room, find a food endometriosis specialist and also listen to your gut.
5). Adjust the lifestyle and diet of your daughter!
She is a teenager, I know. It might sound cruel to tell her to avoid and even to cut off gluten, sugar, alcohol, dairy, soy, meat and eggs that are not from a clean source (I revise here the “general golden standard for endometriosis diet").
Yes, it is cruel and unfair, I totally agree with you, but in small steps, you can optimize this diet, you can personalize it and maybe some day your daughter will realize that this diet is helping her symptoms the most.
I started keeping a diet when I was 32-33 years and my obsessive thought was that if I had known about such diet when I was even 20 years old I would have spare myself of a lot of suffering and maybe, who knows, of surgeries.
Talk to a nutritionist (with a doctor that knows about endometriosis, not just a general nutritionist), read the research about endometriosis and certain group foods (there are plenty) and then start slowly.
You can talk to your daughter, give her the research and start with cutting off just one food group a month. Start from here, it would be enough!
6). Teach her to value herself as a human being, in terms of her personality, talents, dreams, without associating this with the ability of being a wife or a mother
With endometriosis the risks of infertility are higher. Before reaching to good specialists, there could be doctors who will say to your daughter that, no matter the age, she should have to hurry to marry and have a child. This is not the way things should be, at least not in my opinion!
Doctors should do their business without giving us time deadlines and without planning our lives. Moreover, a woman has the right to decide over her body, her life, her priorities. Therefore, teach your daughter to be a valuable human being, with dreams, plans, strong and good values, not just a good wife and a good mother. These are also important, of course, but at least in the endometriosis context, a woman should know she is not just these.
This road is not easy, my dear “mother of a teenager with endometriosis”. But I have some news for you: nowadays, almost no one is spared by health problems. Even if we are so accustomed of displaying a happy, almost perfect life on Social Media, no one is spared of problems. Say a prayer that it’s only this, endometriosis, maybe a not so common or well-known disease, but still a problem that could be managable, it is in the center of many studies and research nowadays. Be the “rock” your daughter needs and she will no longer feel that like a burden but more like a thing that made her shape her life to become the best version of herself!
If you liked my articles about Endometriosis and you found them useful, you can help us with a small donation here. It helps us keep this website and continue writing endometriosis & healthy lifestyle articles.