BOOK REVIEW: Vagina Problems by Lara Parker

    I just finished reading Vagina Problems: Endometriosis, Painful Sex, and Other Taboo Topics by my favorite endo blogger, Lara Parker, and I don't think I have ever read a book so fast in my life. I received her book in the mail late last week and I finished reading it on Monday, and keep in mind, I consider myself a slow reader. My roommate saw me reading this book and made a comment about how she wished she had more time to read for fun. I responded that when there isn't a lot of information about your disease out there, you have to read as much as possible to figure out what is going on in your own body. Parker uses 'Vagina Problems' as an all-encompassing phrase to describe the myriad of other medical issues that come with endo. As most of us know all too well, the issues don't just stop with endo and I know firsthand that it can lead you down a long, dark path of further pain and new diagnoses.  

    Lara's book is different from other endometriosis books I have read as it is so real and raw. She doesn't attempt to really educate people who have never heard of endo before but offers her real and unfiltered experience with her fellow endo sufferers to ensure us all that we are not alone. Lara takes you through her endo experience starting from getting a diagnosis, a struggle we all know all too well, to where she is today and the progress she has made. I have followed Lara for a long time on social media and I just love how real she always is. As we all know, there is not a lot of information about endo out there, so it is really nice when we can find people that are willing to be transparent about all their struggles, and Lara is definitely one of those people.

    

    There are two moments in the book that really stood out to me. The first being Lara comparing the diagnosis of chronic illness to the stages of grief. I had never really thought about it before, but I have definitely grieved about my diagnosis and still do every day. We grieve the life we had without pain and all the things we may not get to do or accomplish in the future because of our pain. We grieve the times of missing out on what our friends are doing because we can't get out of bed, let alone go out and try to have fun even though we really want to. We grieve about how our lives are harder now that we have to make every decision based on what we know our body's response is going to be to it, and so much more. However, the stage that Lara says she experiences the most, and I do as well, is anger. It is infuriating that this had to happen to me. I am angry a lot of the time with my body and why it can't just work properly. Is that too much to ask? I am angry that my friends get to have fun without a care in the world but I have to stay home because my body doesn't want me to have a social life today. Although, like Lara reminds us, this isn't anyone's fault. It isn't your fault that your body doesn't work normally, and it isn't your friends' fault for still having fun when you can't. I try not to be angry, but it is hard sometimes and it's something I'll probably always have to work on. 

    The second moment that really stuck out to me was toward the very end of the book when Lara wrote a very powerful letter to all the doctors who didn't believe her and her pain (pg. 202-207). This is something I know all too well. Lara and I were around the time age when we started having pain and started searching for answers. Having endo as a teenager is its own battle in itself. I was told by many doctors that my pain was all in my head and that I was just being a dramatic teenager. Lara had a similar experience. I don't want anyone else having to think they are crazy because "teenagers can't have endometriosis", but unfortunately, more and more young girls with very real pain are told this every day. In the letter, Lara shares how she still has trauma that she has to go to weekly therapy for from all these doctors that didn't believe her. She says that she has tried to forgive them but she doesn't know if she'll ever be able to even with years of therapy because of how bad they mentally messed with her head. This is something that no one should have to go through. One of my goals when starting this blog around this time four years ago was to make sure other people like me know that they are not alone and that their pain is real and I believe them even if no doctor will. This letter Lara wrote was again very powerful, but I wish she didn't have to write it because she was taken seriously the first time. 

    If you can't tell by now, I very much recommend this book. When Lara announced a while ago that she wrote a book, I could not wait to get it, in fact, I was counting down the days. I knew from following Lara for so long that this book would be amazing and would be just the thing I need to make me feel better about my own pain. Some of you may know that I have been having worse pain than I have had in a long time right now, so this book came out at the perfect time to help me feel a little better. I have said this a million times, but endometriosis is a very lonely and isolating disease, so I read. I read every book I can get my hands on about endometriosis and peoples' personal struggles with it so I know I am not alone (this means you have many more book reviews coming, so get ready;). With the holidays coming up, I think this is the perfect book to get for anyone in your life that has endometriosis or wants to read a first-hand experience on it that doesn't leave out any details. I commend Lara for sharing so many private and intimate moments of her life on social media and in her book because that isn't an easy thing to do but I know she did it to help all of us suffering, so go buy her book and support her!

Follow Lara Parker:

Instagram: @laraeparker

Twitter: @laraeparker

Buy her book!

Link: https://www.amazon.com/Vagina-Problems-Endometriosis-Painful-Topics/dp/1250240689

 

Going Back to College During a Pandemic

 Before going back to college this semester, I was a little nervous, but mostly excited. In the spring, I went home for spring break and never went back to school. That week before spring break, I remember one of my professors saying that we might not be back to school in person after the break and I thought he was crazy. At that time, the coronavirus hadn't really reached the United States yet. It was when it was really bad in Italy and all our study abroad students were sent home, but we never imagined we would be sent home too. Fast forward to August, I was ecstatic to return to school. People kept asking me if I was nervous and I was a little, but my excitement greatly outweighed the nerves. I wasn't very nervous because my school created a lot of protocols, some of them being wearing masks everywhere outside your room, twice a week COVID testing, no visiting other dorm buildings, a mixture of online and in-person classes, spaced out classrooms, the list goes on and on. After being here for about seven weeks, I feel very safe. We received new data this week that said there have only been eight positive cases since we started testing on August 24th and those positive cases were immediately sent into isolation. However, I understand that I'm very lucky in this situation. I go to a smaller school without Greek life or other big places to party. My school is also a community that cares about the wellbeing of each other and I really think our society as a whole needs to be more like that, especially now. Personally, I get tested twice a week because I'm apart of two singing groups at my school. Don't worry, when I'm rehearsing with my singing groups we still wear masks and are spaced at least fifteen feet apart if not more. Even being immunocompromised, I feel very safe because I know my core group of friends is following all the rules and none of us have been in close contact with any of those positive cases. I really hope my school continues to follow all the rules so we can stay here for the rest of the semester. I wanted to make this post because I know a lot of people are curious about what colleges are doing and if it's even safe to be back, and in my experience, yes it is. However, you have to keep in mind that I go to a small school that has the money for extensive testing and other measures to keep us safe. 

Thank you all so much for supporting my blog! This pandemic has given me the time to consistently upload blog posts since March and I hope to continue with this schedule of every other week! Please feel free to reach out to me with any questions or comments through my Instagram: @endoisnottheendblog !

Me on the first day of school!

Breast Cancer Awareness Month

 October is Breast Cancer Awareness Month and although this post isn't about endometriosis, the two are very much connected. People with endo have a higher chance of getting Breast Cancer, so I want to make sure everyone is educated and knows what to look for. My family has been personally affected by Breast Cancer and I think a lot of you can say the same, unfortunately, so I want to use my platform to spread awareness about all women's health issues.

What is Breast Cancer?

Cancer that forms in the cells of the breasts. Breast cancer can occur in women and rarely in men. Symptoms of breast cancer include a lump in the breast, bloody discharge from the nipple, and changes in the shape or texture of the nipple or breast.

How common is Breast Cancer?

Unfortunately, Breast Cancer is very common. 1 in 8 women have a lifetime risk of getting Breast Cancer.

How is Breast Cancer Treated?

Specific treatment depends on the stage one has, but treatment usually consists of radiation, chemotherapy, and surgery. 

Are there different types of Breast Cancer?

Yes, these are the two most common types:

• Invasive ductal carcinoma: the cancer cells grow outside the ducts into other parts of the breast tissue. Invasive cancer cells can also spread, or metastasize, to other parts of the body.
• Invasive lobular carcinoma: cancer cells spread from the lobules to the breast tissues that are close by. These invasive cancer cells can also spread to other parts of the body.

What are the symptoms of Breast Cancer?

• New lump in the breast or underarm (armpit)
• Thickening or swelling of part of the breast
• Irritation or dimpling of breast skin
• Redness or flaky skin in the nipple area or the breast
• Pulling in of the nipple or pain in the nipple area
• Nipple discharge other than breast milk, including blood
• Any change in the size or the shape of the breast
• Pain in any area of the breast

What can I do to reduce my risk?

Keeping a healthy lifestyle is always helpful, but one thing you can do is an at-home breast exam (pictured below):

Make sure doing a breast exam every month makes it on to your schedule because early detection is so important and could save a life. This is something quick and simple you can do at home to make sure you are healthy. Please feel free to reach out to me on my Instagram @endoisnottheendblog if you have any questions or if there are other women's health topics you want me to cover!

More info about Breast Cancer: https://www.cdc.gov/cancer/breast/basic_info/prevention.htm

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