Update On My Bladder Problems

 If you follow my Instagram, you may know that I have been struggling with bladder pain and frequency for the last couple of months. It is not really ideal to be going through this while away at college and in a pandemic, however, my body clearly has a mind of its own. I have been peeing 15-20 times a day, which is about once an hour or more, and I sporadically get very intense bladder pain that feels like a bunch of lasers are going through my bladder at the same time. Not to mention also getting up to pee 3-5 times a night, so as you can imagine, I'm exhausted. I finally had enough of this and decided to call the urology department at Boston Children's since that's where I get my endometriosis care and I have nothing but good things to say about them. About two weeks ago, I went to Boston Children's to get some tests done. I got a urine flow test where you pee into a "special toilet" (their words) and they see if there are any irregularities. I also had an ultrasound done to see if there was anything out of the ordinary. The ultrasound came back clear, but the urine flow test showed that my muscles were tensing up when I pee which means that my bladder is probably not emptying fully. 

The day after I got these tests done, I had a meeting with a nurse practitioner from the urology department to talk about what was going on. To help the urinary frequency, she said I should start double voiding (pee, wait 10 seconds, then try to pee again to make sure I am emptying my bladder fully), drink more water during the day and hardly any at night so I hopefully won't be getting up all night, and going to the bathroom a half-hour before bed, then right before bed to help with the previous issue. She also put me on a stool softener and fiber gummies just to make sure I wasn't constipated. After my appointment, she called me back saying that she wanted to start me on a medication that is supposed to treat an overactive bladder. So, I did everything she said for the last two weeks, and unfortunately, not much has helped. 

I met with her on a Wednesday and the first weekend after that was pretty much hell. I was having terrible diarrhea (sorry TMI, but this is real life!) and the new medication was making me so nauseous. But I decided to stick it out in the hopes that my body would soon get used to it and it would start helping me. After about a week or so, the nauseous died down and now I only get it a little bit after I eat. That brings me to Wednesday of this week. My bladder pain had actually decreased a lot which I was obviously happy about, until Wednesday when it came back at full force and worse than it's ever been. It's now Friday when I'm writing this and the pain hasn't subsided at all, so I don't know what's going on. I had another meeting today with the nurse practitioner from Boston Children's and I originally didn't hear what I wanted to hear. Despite me telling her that the stool softener wasn't helping and it was actually making everything worse, she still thought I was constipated, however, I spoke up for myself because I know my body and I know I'm not constipated, so she took me off the stool softener and I am going to continue with the fiber gummies and try to eat more fibrous foods. Next, she wasn't very happy that the bladder medication was making me nauseous, so she was wary about increasing the dosage since it hasn't really helped at the dosage I'm at. I convinced her to up the dosage and I would start taking it once I got home for break and it would be easier to deal with nausea if I had any because I'm desperate for relief. Then she wanted me to come in to get a special x-ray to rule out constipation. 

Like you may have seen on my Instagram, I really think that I have a disease called interstitial cystitis (IC) because I have all the symptoms (urinary frequency, peeing a lot at night, and bladder pain), and it is very common in people with endometriosis. I was hoping at this meeting that we would finally talk about me having IC, but we didn't. However, I got a call from her a little bit ago that she changed her mind and she thinks we should start looking down the path of IC. She wants me to keep a diary of how many times I pee and how often and she's going to call me on Monday to discuss it. If it doesn't get any better, then we're going to start talking about IC and she's going to put me on an antibiotic that will hopefully help. I was really happy by this news because I have thought I have had this disease for months now, but I felt like no one was listening to me, even when I present with all the symptoms. It may seem crazy to people outside of this community that I am happy to have someone say I probably have another disease with no cure, but after all the medical trauma that I and many other people with endo and related diseases have gone through, it feels so good when someone validates your pain. 

I am not sharing this with you because I want your pity or that I'm trying to complain, I'm sharing this for education because IC is also another disease that people don't know that much about (hence not having a cure). What I want you to take away from my story today is that you shouldn't be afraid to speak up for yourself. You know your body better than anyone, no matter what anyone else tells you. If you have done the research and you feel strongly about something, then PLEASE bring it up to your doctor because you might not find any answers if you don't. I spoke up and I got the answers I was looking for, thankfully. Also, please feel free to reach out to me on my Instagram @endoisnottheendblog if you want to talk about anything endo or IC related because I know it really helps to talk to someone who understands! 

Food Guilt

     Something that I have been struggling with a lot lately is food guilt. I mean this in the terms of eating things that I know will cause me pain, but doing it anyway because it seems like a good idea at the time. The two foods the cause me the worst pain are dairy and sugar. They are both extremely inflammatory foods and cause me a lot of pain almost instantly after eating them. Over the summer, I tried my best to cut out dairy. I don't like a lot of dairy products so I thought this would be easy for me. I haven't had real milk in years, I don't like yogurt, and I'm not obsessed with cheese. This was going well until I realized that all my favorite foods happen to have dairy in them: clam chowder, fettuccine alfredo, and caesar salad. This became a predicament because I didn't want to give up my favorite foods. So, a friend recommended Lactaid pills to me. If you have never heard of them, you basically take the pill with your first bite of food with dairy in it and it helps break down the dairy enzymes better in your stomach. I decided I would get these and take them on occasion when I would eat dairy. This seemed to have worked for me up until now when I have been having some crazy bad pain and I don't know why. I feel so guilty every time I eat something with dairy, but at the same time, I still want to enjoy my favorite foods and not feel guilty about it. 

    Like I said earlier, sugar causes me the most amount of pain which is very difficult because sugar is everywhere. I feel like I don't eat a lot of sugar because I know it will cause me pain, but sometimes I want and deserve to treat myself to a cookie or a piece of Halloween candy my parents got me. However, I feel SO guilty after I eat something with sugar in it. Like with dairy, I can almost immediately feel pain after I eat anything with sugar and I instantly regret my decision. It is my fault that I'm in pain. Why did I let myself have that cookie? That was so stupid of you. I find myself telling myself these things a lot. Food guilt is very real and it is very present in my life right now. Since I've been having increased pain lately, I have decided to completely cut out dairy and sugar (as in desserts, it's very hard to completely cut out sugar) for the time being to see if that helps at all. 

    I recently read Vagina Problems by Lara Parker and she wrote on this topic. She said she too felt very guilty every time she ate something she knew would make her pain worse, but she has learned to allow herself to indulge and not feel guilty about it. That is something I want for myself, but I don't know if I'll get there anytime soon. This disease is so out of our control that you want to control the things you can, like what you put in your body. Well, I know first hand that that isn't easy and it's not supposed to be. So maybe when you're having a good pain day, then you can eat that Twix bar you've been craving all day, but when you are having a bad pain day, maybe hold off on that chocolate until you start feeling better. It's the baby steps that count toward not feeling food guilt anymore and everything in moderation is okay.  

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