Your life changes when you receive a medical diagnosis. Since everyone processes things differently, here is what I’ve learned over the last 15 years of dealing with chronic pain and finally finding the answers.
3 weeks prior to marrying my best friend, I opted to have exploratory surgery. The result was Endometriosis (read more here). At first, I was thankful to feel better and have an answer to ALL the pain! BUT looking back, there are a lot of steps or tips that would have been helpful in my new journey with a life-long, frustrating disease.
So for my “Endo Sisters” or anyone newly diagnosed with Endo or similar conditions – here is what I’ve learned.
- You have an answer. Now what? Take the time to be thankful… you have an answer! No matter how long it took you to get to this point… you now understand what is going on in your body. This is good news and doctors can treat it appropriately. Be thankful.
- Process your new reality. Okay, yes you have an answer, but what does this mean? Being diagnosed may require a bit of the “grieving process”. Endometriosis can be painful, but it can also come with a lot of extra frustrating symptoms. Try to remain as positive as possible. Do not let it defeat you.
- Do your research and find support. Honestly, when I was diagnosed there weren’t people around me that understood what I was going through. My recommendation is to research and find online communities that share in your pain – literally. Understand your diagnosis inside and out. For instance, having Endo may require you to change some of your eating habits or diet. There are certain food ingredients that are important to avoid – especially wheat and soy. It takes a lot of effort, but it definitely helps reduce inflammation associated with those pesky little adhesion’s.
- Don’t play the “what if” game. It’s really easy to fall into the trap of asking yourself “what if” questions. Believe me, I’ve done it too. “What if I can’t have kids” – is the biggest one. “What if I need more surgeries” or “what if I never get relief from this pain”. Don’t allow the disease to win by asking these questions. Chances are that if you have a great doctor that specializes in Endo, your surgeries will be minimal and fertility will be preserved. We don’t know the future – so why worry? Take it one day at time!
- Allow yourself one pity day. I’ll be the first to admit that sometimes the pain can cut straight to my spirit and ruin my mood. Yes, it is definitely hard to live with chronic pain – which is why I allow myself one day infrequently to feel sad about it. After that, it’s time to carry on with life and keep my head up.
- Take it easy and know when to say no. Endometriosis can bring on a lot of unwelcomed symptoms and fatigue is one of them. If you’re a social butterfly or have a busy lifestyle, it can be hard to miss out on activities and events. But sometimes attending an event can contribute more to your fatigue and pain. I’ve had to learn when to say no and actually miss out on some rather cool events. It’s disappointing, but I know when my body needs rest.
- Stay positive and LIVE! It would be easy to spend all day, every day in bed. But where would that get me? Despite the fact that Endo takes a huge toll on our bodies – it’s important to keep moving and stay reasonably active. This will help your mood, energy levels and attitude. Remember that your disease can be frustrating but it doesn’t define you!
- Stay away from WebMD. Sorry, WebMD but your site can really be full of doom and gloom. The last thing we need is to worry more about our bodies. If you are concerned about something going on in your body, definitely contact your doctor or healthcare provider instead of searching online.
- See an Endo Specialist. Unfortunately, there are a lot of doctors out there that don’t understand Endo and don’t know how to treat it. As a woman with ANY reproductive issue, I recommend seeing a specialist that knows how to treat it. This is important for your body AND for the future of creating a family.
If you ever need someone to listen, please don’t hesitate to email me. I might take a couple days to respond but I’m always happy to listen or provide encouragement where needed. Remember that you are not alone – we can get through this together! Email me any time – firstname.lastname@example.org .
Please find some resources below for Endometriosis organizations and support.
- Endo Warriors – a support group full of resources and stories to inspire and encourage you. Like them on Facebook!
- Endometriosis Association – an organization that provides resources and assistance.
- Endo Foundation of America – online resources
- Endo Global Forum – support groups around the world
Copyright 2014 Words By Mara. All rights reserved.
Mara, I pray for you daily!
This is awesome, Mara. I would add from my years of experience with the disease that if you have a doctor who doesn’t want to treat you, but instead just wants to do a hysterectomy (“because you’re done having kids anyway”)… get another doctor. Hormones weren’t an option for me because of my breast cancer risk (and I did end up getting an estrogen-fed breast cancer, so it probably saved my life to forgo the hormones) and my previous OBGYN had happily done a lap. to clean everything out. It needed done again, but my new OBGYN in our new town would hear none of it. “I can’t just go in and clean you out every few years.” Well … actually. OH YES SHE COULD HAVE. I did seek a second opinion, but it was within her practice, so of course the answer was the same. I had the hysterectomy and while in the end it was best for me (after breast cancer I had to take a drug for 5 years that has uterine cancer risk assoc.), I do regret losing my uterus before I really needed to.
Hang in there. A long, chronic illness is rough. You seem like you are learning and helping others. It’s a great way to make the best of something you’d never choose.
This is fantastic advice!! Thank you so much for sharing with the readers. I’m sorry to hear about your experience with doctors. I agree that a second opinion is important – especially when it involves removing a major organ.
Definitely wish you all the best as well. 🙂 Take care.
I couldn’t agree more, Tamara. I once had a doctor who insisted each time I saw him that I needed a hysterectomy. My next doctor kept recommending another lap (which would’ve been #5). My current doctor said absolutely not for either, that no doctor would ever want to touch me surgically again. Opinions vary widely, especially depending on the doc’s knowledge of endo.
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Reblogged this on Bloomin' Uterus and commented:
Wonderful tips for those newly diagnosed, and for those veterans of Endo.
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