I have an endometriosis diagnosis! What Now?

by | May 24, 2021 | Endo Living

I have been in your shoes and learning that you have endometriosis can come as a relief but at the same time very overwhelming. I want to give you some tips that I wish I would have known after my diagnosis before starting my healing journey. Enjoy!

I clearly remember the feeling of relief after I came out of my first laparoscopy surgery when I finally heard my doctor say that they had found stage four endo. Finally hearing my diagnosis and days later seeing all the damage with the laparoscopy pictures made me feel like this was it! My pain of many years was validated, and I thought I was going to be cured because now they knew what I had; This was the light at the end of a horrible and painful tunnel. The problem was that as soon as I got the diagnosis, I went straight to google to try to “inform” myself about this illness and ways I could help with the healing. The truth was that the healing journey was as much of a struggle as the sickness journey I had already been in. I had so many choices and information in front of me that it was causing me more anxiety and frustration at the thought of how my life was going to be. Years later I learned that this response was so normal for so many of us and yet it felt so lonely at that time.

Learning how to cope with an endometriosis diagnosis is hard and most of it is a learning curve but there are steps you can take to make it easier. I am not a doctor, nor is this to be taken as medical advice but I am an endometriosis warrior that fought my way through the health system just like you, to finally find answers to what was happening to me after two decades of pain. I had to start from zero to learn to love my body regardless of all the pain that it caused me, but I am healthier and happier today because of my healing journey. I want to help you regain self-love and have a smoother healing journey overall.

I want to start by saying that NOT all healing journeys are the same, but I hope mine can inspire yours and it can be a tool in your healing journey.

Things to avoid after an endometriosis diagnosis:

Having an endometriosis diagnosis does not mean that you will be cured or that you will start feeling better right away. I thought that I was finally going to feel better and have a solution for my pain just by knowing what I had but, it was far from reality. When I was diagnosed back in 2018, I had been in pain for 16 years at that point and my endo was in an advanced stage. Having patience when you are in pain and already knowing the reason is harder than not knowing at all. Patience here is the key, you will get better but know that your body will take time to heal, and it will not happen overnight.

As I learned about endometriosis and my life decisions, I started to feel ashamed and somehow responsible for my illness. The first thing to avoid is to feel ashamed or responsible for your previous decisions, if you learn better, you will do better but what happened in the past is in the past and your illness was not caused by any of those previous decisions.

It is important to be educated about endometriosis and it is normal to dive into google as soon as you find out the name of your illness but please be careful. There is so much misinformation about this illness out there from how it originates to how to treat it that it gets extremely overwhelming. The first week after my diagnosis I not only had a notepad full of notes on what to do from the internet but also a tower of books from the library on my night table about endometriosis.

I spent hours on the internet searching for drastic lifestyle changes that could help with my pain, bought a lot of supplements and vitamins, and learned about the surgery options, food elimination, diets, infertility, birth control, holistic alternatives, and complications.

All of this got me to a place of a lot of knowledge but one of being extremely anxious. It was as endometriosis wanted to take everything that I enjoyed out of life and wanted to turn me into a completely different person. I became extremely anxious and buried in a pile of information without knowing where to start. I entered a depressed and panic mode thinking of all the wrong turns all the treatments could take me. Everything I was looking into had a downside and I was not sure which one to pick for myself. My advice here is to inform yourself but do not make any harsh decisions until you look deep down into yourself first. Do not lose hope, I know it is hard to not lose it, but I promise you that if you do all the inner work of looking deep down into who you are, your lifestyle, and what you want in your future, you will find the correct path to take in a mountain of opportunities, one that is tailored just for you. Panicking and making harsh decisions during this time will not give you the best outcome.

Things to incorporate after an endometriosis diagnosis:

The most important thing to incorporate during this entire healing journey is YOURSELF!

Nobody knows you better than yourself and considering how any of the standard treatments will affect your entire life is a must. What works for one person is not the same thing that will work for you, so it is important to really get to know your body and what you want. Remember that healing is not about one part of the body as western medicine treats it but rather a combination of your environments, your emotions, and everything around or within you. If you are going to decide on a specific treatment on how to heal your body, why not consider all the aspects of your life into that healing journey?

When I considered all the treatments and options that I had I took into consideration so many aspects of myself, my lifestyle, and the future that I saw myself having, that I truly believe this made the difference in a successful outcome.

Recommendations after an Endometriosis Diagnosis

Endometriosis is a chronic illness, and it does not have a cure, but it does not mean that you will live in pain forever. Understanding that you still can achieve a great quality of life and live a happy life is very important. This illness might be present in your life, but it is not your entire life. There will be so many amazing moments when you will be pain-free and enjoying life that those moments are the ones you must focus on. Endometriosis is not a death sentence, I promise! Even if it feels that way when you are in pain.

After learning about the illness and the treatments, it is important to plan before making any drastic decisions. This is important because it will allow you to establish goals and have a road map to achieve them. Little steps add to big milestones so remember to be patient with yourself. Something that I was forced to do but now I am grateful for is to take time and to take a hard look at yourself and what you want before accepting any treatment. Do not jump into something just because your doctor is telling you to, it is hard, but this is crucial. I remember my first gynecologist telling me to get pregnant to feel better and it was not only a red flag, but it was not in my plans for that moment, so it is important to have your priorities clear before you commit to life-changing treatment.

The reasons for different treatment plans are very different for all of us, from being a mother to finishing your degree, but is important to leave all the prejudice and shame that society puts on us and to really look inside and evaluate the reasons why you want a specific treatment over another one, this will dictate which treatment to pursue. We are all different, our lives are different, our goals are different, our emotions are different, so we cannot expect to apply the same healing treatments to all of us.

Just like the reasons that I mentioned before, another self-assessment that is important to do is to assess where you are in life. Consider the type of job you have, your sleeping patterns, eating patterns, mental health, family support, what economic resources you have, what free time you can allocate to downtime if needed, healthcare resources, etc. Putting all the cards on the table will determine where to start and what treatments are better for you at that moment.

I want to give you a little insight into where my life was when I got my diagnosis. I was finishing my minor in architecture, barely sleeping, working full time, and eating on the go; it was not a good idea to go into surgery right away, and even though I was in a lot of pain, I self-assessed myself before doing anything. I knew that I was not going to take time off school knowing I was so close to graduation, the health system put me on a waitlist for my surgery, I was very sick and in pain, but I knew that I had to start with baby steps so that when my surgery date came, my body and my mind could be in the best shape possible for a speedy recovery. When you are choosing which treatment options or life changes to implement, but the cards on the table and implement the ones that are right for the season you are in, they will change, and you will adapt but it is always essential to self-assess.

At that time in my life, I realized that I needed more time to sleep, that I needed to eat healthier and more consciously not eat on the go, I knew that I needed to move my body more, that I had to lower my stress levels, and that I had to start with some treatment to stop my anemia which was happening from my excessive bleeding. Most of these were small daily changes, very conscious, and after a few months, I decided to dive into a holistic treatment which was what I believed was the best for me for that season.

The trick here to start your healing journey is to understand where you are in life, your motivation, your capability and to understand that this is a journey and therefore this season that you might be on right now, will pass and you will be moving on the next season in your life.

Something that really helped me was to understand that our healing journey does not necessarily have a destination. Why was this important? Well because endo healing journey can take months or even years and it is important to not rush with easy fixes; just give your body time to heal. Feeling ashamed of where you are in this journey will not take you anywhere so just embrace the journey without shame of the place you are in. Understanding that it is a journey will also allow you to change and transform according to your needs, believe me, you will try many treatments and approaches and at the end of it all you will change as a person but please know that it is all part of healing. Our journey is full of ups and downs but the end goal, if there is one, is to enjoy the process while having happier and pain-free days.

My last recommendation here is to talk about your illness and your experience with people that you trust. It does not have to be a lonely journey especially when there are groups of people that understand what you are going through. There are even endometriosis local groups that will help you even navigate the health system, and they will enlighten you with their experiences with local doctors. Facebook groups are great to form those connections and I highly recommend them.

Advocate for YOURSELF!

This is the most important thing to do after an endometriosis diagnosis and it is the hardest. It requires a lot of courage and self-love, but this could be what dictates your life quality moving forward. Finding a team of doctors who respects your point of view, motivation, stage in life, and values is a must.

At the beginning of my healing journey, I was broken and did not have the courage to advocate for myself, this changed after, but you might be at this stage right now. My husband was there on the appointments and to give me reassurance when I needed extra support. If you can, find someone you can trust and take them with you so you can be more comfortable and confident when speaking to a professional about what you want for yourself.

Because there are different treatments to pursue, it is important to find a specialized doctor for that specific treatment that you are looking for.  The gynecologist that discovered my endometriosis was not the same one that performed my second laparoscopy and that is totally fine. He was the gynecologist that I needed for that stage in my life but once I had an endometriosis diagnosis, I did my research and found someone that was specialized in bowel endometriosis and I had to speak to him and explain why I wanted him to refer me to the other specialist. If you are not comfortable with the expertise or treatment that a doctor is recommending, do not be afraid to seek out different options. Do your research and find the best in your area.

There are other professionals like holistic doctors that can also be a great asset to incorporate in your healing journey. I did a holistic treatment for almost two years after my endometriosis diagnosis, and I had a great experience. I saw results and I was feeling a lot better. At some point, I even combined hormonal treatment with my holistic treatment. It is important to always check with your doctor before starting anything, in this case, both of my doctors knew my course of action and what I was taking for my hormones and holistically and it all worked perfectly. I felt that I was treating my body as a whole and mentally it allowed me to move forward and heal a lot better. You can create your team of professionals to pursue healing, but they all must respect and understand your choices for it to be most effective. Do not compromise who you are and what you want, because it will create the opposite of healing, during this process your true self must shine for others to see it. Be clear and understand what you want from this journey. Investing in a team you can trust will give you the confidence that you need to get to a place of health mentally, physically, and more importantly with support.

Be patient and love YOURSELF!

This healing journey will never be linear, there will be ups and downs and it is important to be patient with yourself. There are many times that you will doubt your decisions, you will change your mind, you will give up, and then change your mind again… but it is all part of healing. There will be people in your life that will not understand what you are going through and will leave your side, but there will also be the ones that love you and will stick with you until the end.

None of this healing journey will be perfect but in the end, it will all make sense. Sometimes you will feel drained, exhausted from just trying, and other days you will feel that all the small changes that you are making are taking you to a healthier version of yourself and hopefully with less pain. Do not be so hard on yourself, life is about learning and trying repeatedly. Treat this healing journey as an adventure and there will not be room for judgment. Judging yourself will not take you anywhere, not for the past decisions or the future ones, instead focus on the possibilities of a healthier and pain-free version of yourself. Give yourself credit for this new adventure that you are exploring because your healing journey is unique and absolutely nobody will know how to navigate it other than you. Finally, love yourself so much that no matter the bad days you still love yourself for being able to carry you until this point, love heals everything.

Hoping you have an amazing healing journey,

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About Me

Welcome! I’m Ana. I started Endo Culture because I want to give women that are suffering from endo a place where they can find tools, information, and tips on how to thrive with this chronic illness.

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Is a mindful brand that I created as a result of my endometriosis health journey. It is for endometriosis and chronic pelvic pain sufferers. With my experience managing chronic pain for over two decades, I learned of holistic alternatives that help greatly. My purpose is to help others relieve some of the pain experienced during their menstrual cycle in a more natural and comfortable way.

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