5 Things To Do After Receiving an Endometriosis Diagnosis

Endo warriors know that receiving a diagnosis is life-changing. On one hand you are finally relieved that what you are going through is real and has a real diagnosis. On the other hand, you know that you are facing a life-changing diagnosis. It is a terrible rollercoaster of emotions. Which is why we put this article together. You will find out what endometriosis really is and how it is diagnosed. Then you will see five things that you need to do next. That way you aren’t completely overwhelmed by your diagnosis. It is a
journey. We are your guide.

What Exactly is Endometriosis?

Endometriosis is the growth of uterine cells outside of the uterus. They can be grown in the walls of your uterus, your fallopian tube, ovaries, or abdomen. They can affect your bladder, bowel, and stomach as well. Endo cells have been known to grow all over the body in extreme cases.

How it is Diagnosed?

Endometriosis can be hard to diagnose. There are several steps that you may have to go through. First, you will need to get a pap smear. The doctor may check for abnormal cell development. Then you may need to get an ultrasound. This will give your doctor a better idea of how your uterus looks. Next, you will probably need an MRI. This is a little more detailed than ultrasound but it does take longer. Finally, you may need to have a laparoscopic biopsy done. Your doctor will take samples of tissue to determine if you have and endometriosis cells growing where they should not be. It is a time-consuming process that can be physically, mentally, and emotionally exhausting.

What are the Symptoms? 

The symptoms of endometriosis can vary. For most women, the symptoms themselves are the same but flare-ups, intensity, and duration can change. Triggers can vary between women as well. It can be hard to find comfort and there isn’t a cure-all for everyone. Some people respond better to certain treatments than others. Here are some symptoms: 

  • Pain – abdominal cramps, lower backache, and an achy feeling is common 
  • Heavy Bleeding – most women who suffer from endometriosis have heavy bleeding during their cycle as well as spotting or bleeding throughout the month. They also have longer than average cycles.  
  • Bladder Issues – frequent urinary tract infections, trouble urinating, or painful urinating are common.  
  • Irregular Cycles – some women won’t have periods for months and then have two in one month. They are unable to track their periods.  
  • Constipation or Diarrhea – including IBS 
  • Headaches 
  • Depression 
  • Bloating – it is common to have to bloat after eating certain foods. 

These are just a few of the symptoms. Some women will have all of these plus some and other women will have none of these but a few of their own. Endometriosis is different for every woman.  

The Five Things You Need to Do Now 

You have seen the doctor. You have gotten your diagnosis. What do you do now? That is the big question. You may feel that you are standing at the cusp of a ledge. Everything is about to change. Some changes will be welcome relief while other changes are confusing. There is no reason to fall apart just yet. You may want to have a good cry – go ahead there is no harm in it. Then you need to dust yourself off and take control. You don’t have to let endometriosis rule your life. Here are five things that will help you through. Now, you don’t have to do them in this order, but you will want to do all five.  

1.Discuss Treatment Options 

There are many ways that you can go to. You aren’t doomed to get a hysterectomy simply because you have an endometriosis diagnosis. Your doctor may want to start off with birth control. There are options for controlling the symptoms as well. This might mean a new regime of daily medications. Of course, you may have to have surgery to remove some endometria, but this is usually a process that you will have to go through more than once as it is not a permanent solution.  

While you talk to your doctor, write down terms that you aren’t familiar with. Keep notes of suggested treatment options. Write your questions down. You can take all of these with you to every doctor’s appointment. Keep asking questions until you get the answers that you need. Understanding endometriosis and the treatments you are offered are the keys to being able to find the right treatment option for you. If you aren’t comfortable, you can say no. Be your own advocate.  

2. Find an Endo Specialist 

Endometriosis is relatively new. There isn’t a lot known about it because research simply hasn’t been done. Few doctors have kept up with the new and current studies on endometriosis. That is why you have to search out an endo specialist. You can ask them these questions to help you determine if they are familiar with endo treatment options: 

  • How many endo patients do you see? 
  • What is the most common treatment for endo? 
  • How is endo determined? 
  • Is your staff trained in endo and endo treatments 

These questions will help you to determine if your doctor and you are on the same page. It will be easier for you to talk to a doctor that has the information that you need and can explain to you in terms that you understand.  

3. Get a Support Group 

There are going to be times when you really need to vent. You may want to see what others are going through. Of course, you may want to get more information about treatment options from someone who is going through it or has gone through it. That is where a support group comes in. You may be able to find a group that meets in person by talking to your doctor. They may have information about where to get in touch with a real-life support group.  

Your other option is to go online and find a support group. You can find them on almost every social media outlet. Facebook has one that has close to a million members. This way you will have someone available almost twenty-four hours a day. You will also have access to many different views on treatment options. You can see how they affected other people physically and emotionally. Not all treatments are as good as they seem. It is always a good idea to talk to others who have tried it before you do but remember not all treatments react the same for everyone.  

4. Research is Your Friend 

Do not be afraid to ask questions. Don’t stop at the first answer. Keep asking until you feel that you know all you can about the question that you are asking. No one ever said they knew too much. Get a notebook. Categorize it into questions, treatments, doctors, hospitals, symptoms, healing, and medications. This will help you to keep track of all the information that you are getting. You want to be prepared for every possible outcome. Knowing what could happen and being prepared for it will help you to be mentally ready to deal with whatever the endometriosis decides to give you. A notebook will be easy to take with you to appointments. It will also give you a place to keep any handouts that your doctor gives you. Organization and determination will help you to conquer anything. 

5. Indulge in Some Self-care 

Endometriosis, or any chronic condition, can take a toll on your body that is overwhelming. The toll it takes on your mind can make you feel weaker than you are. Indulging in some self-care can help you to recharge your body and soul. It can take many forms. The important thing is to do what makes you feel good. For example, you may want to soak in a hot bath with candles and music. Others feel like a good book can take them away from the stress. Coloring pages is another option. Some people feel like they need to get out and enjoy the world. A trip to the movies, a museum, or a dinner out maybe what makes you feel good. It doesn’t matter how you do it – you just need to take some time for yourself so that you can recharge.  

We hope that you use this article to understand your endometriosis diagnosis. It is meant to be a tool to lead you down the road of healing, both mentally and physically. Taking the time to listen to what your body really needs is one way to break the grip that endometriosis seems to have on your life. You are an endo warrior! You are in control. You may feel weak, but you are stronger than you realize. Now go, research, learn, and then remember that self-care is not an option, it is a necessity.  




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