What Advice Would You Give to Someone Just Diagnosed with (or Suspects) Endometriosis?

 

So, you’ve been diagnosed with endometriosis (Or you suspect that you have it.) Now what? It can be so difficult to know where to go from here. We’re here to tell you: you’re not alone. There’s hope. You can (and will) live a happy, full life in spite of your illness. You are more than your pain.

Today’s post is the final in a series we’ve been sharing all month long on how to support women with endometriosis. Below, you’ll find advice and thoughts directly from our network of endometriosis sisters. They know how you’re feeling because they’ve experienced it too, and today they’re sharing some encouragement.

Whether you’ve already been diagnosed, or you’re in the process of finding the answers, we hope that you’ll take a moment to read through their words, and even share them with your network. If you’re a fellow endo sister, we invite you to weigh in in the comment section too. We’re stronger together!

If you suspect you might have endometriosis, it is so important to be your own advocate. Below, our endometriosis sisters weigh in on exactly how you can work with your providers to find an answer for your pain.

“Trust what your body is telling you. If something doesn’t feel right, see a doctor who will listen to you. Pain between periods is not normal. Irregular bleeding is not normal. Pain during intimacy is not normal. Keep track of your pain and then tell your doctor everything!! Be your own advocate. Then practice a lot of self-care. Surgery isn’t curative all the time. A hysterectomy definitely isn’t curative.” -Dr. Arielle Denise Dance

“If any woman suspects endo or has been diagnosed with endo, they need to go to only a qualified excision endometriosis specialist. They need to educate themselves. There are several websites and facebook sites that are educational and have a wealth of information. Once they get a clearer understanding, they will be able to seek out the right doctors and support team. Do not be afraid to disagree with your current gynecologist, you need to follow your instincts and go to the best gynecologist out there. Unfortunately, it may mean traveling and have a financial impact, but it will get you back your life and no one’s life can be measured because of money or that a dr. may be far away. ” – Jane Joffe

“If you suspect you may have endometriosis, educate yourself. Hormone treatments do not work, hysterectomy is not a cure, ablation surgery does not remove the disease at its root. You need to find an excision specialist and a pelvic physical therapist who each specialize in endometriosis and will fight for you to be well. You need to understand that in this battle with endometriosis, you may be your only advocate at times. We live in a sea of misinformation and myths when it comes to endometriosis. Education on the disease is your strongest weapon. Women with endometriosis deserve real care. Use your voice until you find care that meets your needs. Also the best advice I ever got was from Heather Guidone who told me, that as a born caregiver, I am going to have to fight this disease like it was for someone else with all the fervor it takes, because no one is going to stand up and fight it for me.” – Dr. Sallie Sarrel

“I would tell a patient who may suspect endometriosis to learn everything you can about the disease from legitimate resources online. I would encourage patients to watch the movie Endo What and join established online facebook support groups like Nancy’s Nook, Endo Warriors and Endometropolis. I would encourage each patient to become well versed in the disease and find an excellent multidisciplinary care team which should include an expert excision surgeon as well as other multidisciplinary providers that can help support her on her journey to optimal health.” – Casey Berna

“Do not give up on yourself. Listen to your gut–our bodies tell us when something isn’t quite right, and we owe it to ourselves never to give up. If a doctor doesn’t want to consider endometriosis, force them to tell you the reasons why it can’t be endometriosis. If you’re told to get an MRI (which is unfortunately heavily relied upon for diagnosing endo in some countries) and the MRI is negative, get a second opinion. Or a third. Or a fourth. If you’re having a laparoscopy, get photos from the procedure, especially if the gyn still doesn’t think it could be endo. What one doctor may miss could be clear as day to an expert.” – Melissa Tison

“To a woman who suspects she has endo, I would advise her to fight for a diagnosis as hard as she can, even if it means she must see multiple doctors. Any doctor who does not treat your symptoms as being serious should be left and you should always seek a second opinion. It can be hard to find doctors who understand endo, but there definitely are some out there who do. Keep searching until you find them.” -Julia Sweeney

“Advocate for yourself! Find a doctor who believes you. The only way to definitively diagnose is with exploratory surgery, which isn’t to be taken lightly, but you don’t have to settle for someone just putting you on the Pill because they don’t know what else to do. I highly recommend using an app or some other sort of tracking system for your periods, cramps, etc. (I personally like Clue), to help you learn what your body’s “normal” is.” – Lydia Bowers

“If she suspects endo, I would tell her that her pain is real, that she is not making it up, and that she needs to find a good specialist and advocate for herself. Nobody else knows what goes on in our bodies so we need to be our own best advocates.” – Kate Schneider

The average endometriosis diagnosis takes ten years. So most likely, you’ve been struggling with pain for years, and your diagnosis is just confirmation of what you’ve known for quite some time. Still, hearing the words “You have endometriosis.” can be scary and overwhelming at first.

“Become an expert patient! This is not a condition that is well understood, so you need to become an excellent self manager. You are the CEO of your own health – employ the best people you can to help you manage your condition. I always advise women to join their national support organization to ensure that they are receiving factual and peer reviewed information. Without the facts and without self advocacy we risk being led down a path of repeated ineffectual surgeries, multiple drug therapies that can have debilitating side effects or life-changing decisions such as pregnancy or hysterectomy. When women take control of their own health, their own education and their endometriosis – informed choices follow. Learn from those of us who have gone before you, learn from our mistakes, learn from our successes. There are some wonderful endometriosis charities worldwide who offer support and education.” – Kathleen King

“To a woman who has just been diagnosed with endo, I would advise her that her life is going to be much different than it was in the past. However, that is not always a bad thing. It poses the challenge of having to adapt to a new lifestyle, which can be hard. But, seeking help from a cognitive behavioral therapist or psychologist can greatly help in transitioning from a normal life to one with endo. Even though it can be hard to open up about endo with others, start a conversation whenever you can. Educate your family and friends and don’t be afraid to use social media as a tool to spread awareness. There is a huge community of endo warriors out there on social media who will help you whenever you need it. The more that others are aware of endo, the greater chance we will have a cure for it in the future.” – Julia Sweeney

“Immediately consult with an excision specialist!!! Even if you don’t think you can access the care, at a minimum, get an opinion from an expert excision doc to see what ALL of your options are. Generally speaking, the average OB/GYN is going to tell you that your “only options” are to have “burn off surgery” followed by hormonal methods (such as birth control or Lupron) followed by removal of all reproductive organs. Not only do these methods NOT thoroughly and completely treat the actual endometriosis lesions – they are potentially not even necessary (especially the removal of organs), and are certainly *not* your only options. There are specialist surgeons out there who offer remote record reviews / phone consults for free. For the cost of postage, you can get an expert’s opinion of your case – no travel required. That’s how I got started towards getting my life back – I recommend it to anyone and everyone who has or thinks they might have endo.” – Rebecca L. Gibson

“This is a hormone imbalance. There are more options than just taking birth control pills for the rest of your life. Yes, it is possible to heal, really. Don’t wait to address the hormone imbalance. See a licensed naturopathic physician to help you naturally balance your hormones without the use of external hormones- these are a short-term quick fixes. Seriously, don’t wait to address your hormones. If you have painful periods or PMS, this is a sign your hormones are already out of balance. This can be fixed so you don’t continue to suffer. Beware of those who try to put a band-aid on the issue with hormones like topical progesterone or oral birth control pills. These short-term fixes will make your hormones less balanced in the long run.” – Dr. Allegra Hart

“Although you are going through a hard time, it will get better! It always does! You just have to get over the bump and you have to keep telling yourself this.” – Michaela, age 15

“If she has just been diagnosed with endo, I would say firstly congratulations because although the journey ahead might seem long and tiring, the pain and suffering of nobody understanding you and knowing what’s wrong is over. I would tell her to continue to stand up for herself and to not give up until she feels better.” – Kate Schneider

Whether you yourself have been diagnosed with endometriosis, or you love someone who has, we hope that you’ve enjoyed our series on supporting women with this disorder. We know that we’ve learned so much from our brave community, and we are so thankful to each of the women who took time to share their pain, their insights, their stories, and their strength so that they could help others. We are so grateful for each of you! As we wrap up our month long series, we can’t think of any better way to end than with these words:

“My advice seems cliche, but it’s all we really have: Never give up. There will be moments where the pain is so bad that you will feel as though life is not worth living if it means suffering this way. Do not give up. There will be days when you can’t get out of bed and you feel like a burden to those caring for you. Do not give up. There will be days when you think that it will never end and that you will be trapped in this betrayal of a body forever. Do not give up. We are a community of women who suffer silently together believing that we are all we have and no one can ever understand us. For now, hope is all we have, and holding onto that is a struggle in itself. But we are stronger than many because we have to fight through the pain and frustration every day. That strength cannot go unnoticed and unrewarded forever.” – Kate Priest

Tara and the BPP team

Hey Endo Sisters and supporters! When you shop Be Prepared Period, you can feel good knowing you’re supporting a business that supports Endometriosis research. Shop using the link below, and we’ll donate 5% of proceeds to the Endometriosis Research Center. This offer applies all year round – so you can give back while you order your monthly supplies.

Psst! Think you might have Endometriosis? Our free guide helps to separate fact from fiction. Click below to download it!