SHARING YOUR ENDO STORIES: Part 5 Jonnie

“Hi, I am Jonnie (pronounced Johnny). I am 30 and divorced without a uterus. I was diagnosed with endometriosis while I was in college. At age 24 and by a miracle I became pregnant with my daughter. I had a textbook perfect pregnancy and an uncomplicated delivery in November 2015. It is normal for the body to bleed while healing from pregnancy and delivery but my body deteriorated. I bled for days, weeks, every month for the next four years postpartum. In 2019 the lower back pain was debilitating and I had to request a medical note for work so the administration wouldn’t get mad at me for sitting at my desk while teaching. In tears, at the age of 29, I asked my OBGYN for a hysterectomy. He gently reminded me a hysterectomy would not cure endometriosis but I was seeking relief. Only 22 days after my 30th birthday I had a hysterectomy and only my left ovary was not removed. The pathology diagnosis found Adenomyosis on my uterus and my right ovary was covered in endometriosis scars and a chocoholic cyst. Post-operation my hair stopped falling out, my face no longer looked grey, and I lost all my bloat that I had caused my then-husband of accusing me of gaining weight. Four months after the hysterectomy, my then-husband (who accused me of exaggerating my pain and symptoms for attention) asked for a divorce partly because he didn’t want to live with someone who has a chronic illness and couldn’t give him a second child.” -Jonnie 

Instagram: @jlarson.lchs

Thank you so much for sharing your story, Jonnie!! 

BOOK REVIEW: 100 Questions and Answers About Endometriosis by Dr. David B. Redwine

Like I said in my last book review, I have been reading a lot of books about endometriosis to better educate myself on the disease I live with every day. 100 Questions and Answers About Endometriosis by David B. Redwine, MD, FACOG was recommended at the end of another endo book I read, so I thought I would give it a read. Like the title indicates, Dr. Redwine goes through all the commonly asked questions about endometriosis, making this book a great resource for women just diagnosed with this disease they've never heard of. The book is broken up into eight different parts with patients' experiences sprinkled in. I am now going to go through all the parts of the book so you can get a good idea as to why I recommend this book (all of the following information can be found in the preface at the beginning of the book). 

Part 1: The Basics- 

• What is endometriosis?
• What is the endometrium?
• Can endometriosis occur in males?

Part 2: Symptoms and Diagnosis-

• What are the symptoms of endometriosis?
• Do I need to have surgery for diagnosis?
• Are scans useful in making the diagnosis?

Part 3: Symptomatic Treatment-

• What is symptomatic treatment?
• What are medical therapies based on?
• What if medicine doesn't relieve my pain?

Part 4: Surgical Treatment-

• Does hysterectomy cure endometriosis?
• How is intestinal endometriosis treated?
• Why do women with endometriosis seem to have so many surgeries?

Part 5: Other Causes of Pelvic Pain-

• What is adenomyosis?
• What is interstitial cystitis?
• What is irritable bowel syndrome?

Part 6: Fertility Issues-

• Can endometriosis cause infertility?
• Does pregnancy cause endometriosis?
• Does pregnancy cure endometriosis?

Part 7: Heredity-

• Is endometriosis heredity? 
• Is there a gene for endometriosis?
• Will my daughter get endometriosis if I have it?

Part 8: Final Thoughts-

• What treatments for endometriosis will there be in the future?
• Can endometriosis be prevented?
• Will the confusion about endometriosis ever end?

I recommend this book to anyone who was just diagnosed with endometriosis or has a loved one who just was. This is also a great resource to anyone wanting to learn more and become more educated on the subject, like me. This book answers every question I could ever think of having to do with endometriosis, and it is written by a doctor who specializes in endometriosis, so I know it is coming from a trustworthy source. If you are interested, you can buy the book using the link below and let me know what you think! 

Link: https://www.amazon.com/100-Questions-Answers-About-Endometriosis/dp/0763759236

SHARING YOUR ENDO STORIES: Part 4 Caroline

“Hi, my name’s Caroline, I’m 19, and I have endometriosis. I remember my first period being very painful, but I’d been told that periods were generally uncomfortable. At 11 years old, I didn’t realize the difference between pain and discomfort. I went about my life for the next few years having cyclical pain, until my freshman year of high school when I was put on birth control. What followed was several years of changing birth controls, skipping periods, and being miserable. Something wasn’t quite right with my body, but when I suggested endo to the gynecologist, she brushed it off. I had several episodes of what I thought was appendicitis that landed me in the ER, but each time they found nothing, I grew a little more hopeless. Finally, during my senior year of high school, I went to the adolescent gynecology clinic at Boston Children’s Hospital and I had a laparoscopy with ablation that confirmed endometriosis. I thought that after that surgery, I’d finally experience relief. I didn’t. The pain was still there, the IUD they’d inserted was horrible, and I was beyond confused. At some point, the doctor prescribed Synarel, which is a nasal spray that essentially medically induced menopause for the duration of the treatment. I suffered through seven months of that with no relief. When I started college, the pain and other symptoms hit an all-time high, and I was desperate for something, ANYTHING that would ease my pain. I called my doctor and told him I felt like the endo was coming back, that I needed help. He told me it was impossible because he’d done the ablation and I was on Synarel. Probably I was just constipated and should go see a gastroenterologist. I was crushed. I felt ignored and disbelieved all over again. The next day, I randomly came across an article online that a girl with endo wrote, and she had the same exact story as me. I messaged her, asking what to do, and she pointed me in the direction of a Facebook group called Nancy’s Nook. I stayed up all night pouring through the posts and articles, tears streaming down my face as I was finally finally validated in my experience. I learned about the difference between ablation and excision, why Synarel is not a good treatment option, and why I was still having so much pain. To make a long story somewhat shorter, I found a new doctor, and I had an excision surgery on June 5th. I’m still recovering and I have a long road ahead, but for the first time in my life, I feel like the endo is finally out of my body. I feel like I have a second chance at life. Endo is a horrible, debilitating disease, but as Taylor says, endo is NOT the end. Thank you for reading :)” -Caroline 

Instagram: @spunkycaribou23

Thank you so much for sharing your story and helping your fellow Endo sisters, Caroline!! 

BOOK REVIEW: Beating Endo: How to Reclaim Your Life From Endometriosis by Iris Orbuch, MD and Amy Stein, DPT

    Beating Endo: How to Reclaim Your Life From Endometriosis by Iris Orbuch, MD and Amy Stein, DPT is different from other books on endometriosis that I've read becuase they take a different approach with their patients. Orbuch is a gynecological surgeon and Stein is a doctor of physical therapy. Together they work to treat the whole body from endometriosis, not just cut it out and move on. They believe a mixture of surgery, medication, and pelvic floor physical therapy is the key for women with endo having the best quality of life possible. Beating Endo is the first book I've read that has explained why I have so many other issues because of my endometriosis. Before reading this book, I didn't realize the other pain I was feeling was related to my endometriosis. For example, after reading this book, I think I may have interstitial cystitis and irritable bowel syndrome, so I will definitely be bringing that up to my doctor. 

    The fourteen chapters of Beating Endo go through how to heal the whole body in order to help your endometriosis pain. These chapters include:

1. What is Endo? The Disease Process of Endometriosis
2. The Goal: Regaining Quality of Life
3. Endo and the Body's Care: Why Physical Therapy Plays an Essential Role
4. Endo and the Bladder
5. Endo and the GI Tract
6. Endo and Sex
7. Pain, Disease, and the Central Nervous System: A Multimodel Strategy for a Multidimensional Disease
8. Endo and Nutrition
9. Endo and Your Environment
10. Endo and Your State of Mind
11. Excision Surgery
12. A Special Case: Endo and Teens (but This Chapteer Is Not Just for Teens!)
13. Endo and Infertility
14. Reclaim Your Life

    I have never learned so much about my own body from just one book, so I 10000% recommend this book to anyone with endometriosis or to those who have a loved one suffering from the disease (my mom is reading the book right now and is learning so much)! Because of the knowledge I have gained from this book, I have decided to go back to pelvic floor physical therapy because I believe this is essential to my healing going forward in my life. I strongly recommend reading this if you have endometriosis because you will learn so much about your own body and the disease you suffer from. You can buy Beating Endo using the link below and let me know what you think! 

Link: https://www.amazon.com/Beating-Endo-Holistic-Treatment-Endometriosis/dp/0062861832/ref=pd_lpo_14_t_0/133-6770605-4264700?_encoding=UTF8&pd_rd_i=0062861832&pd_rd_r=450d6b68-7a30-4be8-8af9-c058f6ae5483&pd_rd_w=iW9Pg&pd_rd_wg=3qbVg&pf_rd_p=7b36d496-f366-4631-94d3-61b87b52511b&pf_rd_r=3R4BFD6S76XBWJZT4JC3&psc=1&refRID=3R4BFD6S76XBWJZT4JC3

BOOK REVIEW: Living with Endometriosis by Samantha Bowick

Recently I've been reading a lot of books about endometriosis (more book reviews coming soon) to better inform and educate myself about the disease I live with every day. I think it is so important for us to do our own research about this disease because unfortunately there isn't a lot of information out there and we can't always trust everything our doctors say. Living with Endometriosis: The Complete Guide to Risk Factors, Symptoms, and Treatment Options by Samantha Bowick is different from any other endometriosis book I have read because Bowick isn't a doctor, she is a real woman who suffers from endometriosis, and I think that makes her more qualified to share her life with endo than any doctor. 

Reading about endometriosis from a sufferer's perspective is so different than reading a book by doctors. The books I have read written by doctors feel impersonal and like they are just stating one fact after another. Bowick makes sure her audience knows she is not a doctor and reiterates multiple times that just because a treatment worked or didn't work for her, that doesn't mean everyone will have the same experience, which I believe is something doctors lack when writing about this disease.

Bowick begins her book by telling her endometriosis story to ensure the endo sufferers reading her book do not feel like they are alone. After she tells her story, she has nine more chapters: Endometriosis Explained, Surgical Treatment Options, Non-Surgical Treatment Options, Alternative Medicine Options, How to Find the Right Doctor, Lifestyle Changes, Related Illnesses, How Endometriosis Affects Those Around Us, and Awareness. I could easily tell that each chapter was thoroughly researched and they were all extremely informative. A little touch the Bowick added that made the book so much for personal for me was sharing her experiences with everything she talked about. This is one of the aspects that makes her book more informative than a doctors book because doctors cannot contribute those real-life experiences like Bowick can. 

If you are an endometriosis sufferer or have a loved one who is, I 100% recommend this book! It is the perfect mixture of informative and personal that makes an endo sufferer, like me, feel not so alone and that there are many things I can do for myself to make my quality of life the best it can be. If you read this book, you will see that Bowick's endo journey was anything but easy and she still persevered and used her knowledge to help other women like her, so thank you, Samantha!  

SHARING YOUR ENDO STORIES: Part 2 Ellie

“Hi I'm Ellie, I'm 24. I was 12 years old when I started my period and 13 years old when I started on the pill. For me starting the pill was because my periods made me pass out in pain. So to start the pill was such a relief. Yet regardless of the pill, my story didn't end. Unfortunately, due to other health conditions, my concerns for my abdominal pain was never in the limelight. As a result, it was only at age 21 where I learned about endometriosis. Despite all my symptoms. Fast forward and I still have a journey to go down with endometriosis. Though the relief to know what it is, is amazing! I'm no longer on the pill. However, that has meant a year of bleeding - For example, I have spent the last 2 months with only 3 days where I wasn't bleeding (and heavily). I even ended up in A&E as a result. Due to everything I have been through and are going through. I find it immensely important to spread the word. Endometriosis is 1 in 10. Yet in the medical world, it still falls through the cracks. But I will fight until our voices for endometriosis are heard and the help we need is found!” -Chronic Illness Blogger 

Instagram: @lloydielife

Thank you so much for sharing your story, Chronic Illness Blogger!

SHARING YOUR ENDO STORIES: Part 3 Hannah

“Hi, I’m Hannah and I’m 20 years old! When I was 11 years old I got my first period. I was so excited to tell my mom that I was “finally was a woman”, not knowing what was coming next. All throughout middle school I was handling everything fine and had no issues. When I began high-school I started to have the worst pain of my life when my periods would come. I would stay home from school curled up in bed crying with my heating pad on the highest setting. Sometimes I would become physically ill and vomit, while also almost passing out. I did not start birth control until the summer before my freshman year of college, therefore battling endometriosis on its own for 4 years. My doctors always told me it was “bad periods that I needed to learn to power through.” I just knew this wasn’t right.  Once I started on the pill things were okay, but I was still held back from living a normal life. Next, we tried the implant Nexplanon. This was a big fail. I ended up having my period for 4 months straight, terrible! I had that removed. Finally a year ago in May, I was referred to a surgeon. I had my referral and a week later he was ready for surgery. Of course, endometriosis was found. An IUD was put in place and I was started on Orilissa, putting me into medically induced menopause. I am currently in the best place I have been in years. I no longer have chronic pain every day and I am able to do everything I enjoy without worrying if I will need to go home and relax from all the pain. Of course, I always have concerns about my future and starting a family, but one day at a time I feel stronger and better than ever. If you or anyone you know is struggling please do not hesitate to reach out! I am always willing to talk! I am currently in nursing school while forever battling endometriosis, so I have some extra knowledge and would be delighted to help anyone in any way I can!” - Hannah

Instagram: @hannah.cassidyy

Thank you so much for sharing your story, Hannah! Your future patients are so lucky to have your special knowledge of Endometriosis!