Living with Endometriosis, or any chronic illness, can be relentless. When it feels like things won't change no matter what you do, it becomes difficult to see the light at the end of the tunnel. We get so mired down with another day of pain, another complication, another disappointment, and well...it's enough to send anyone back under the covers for a week. 

This year, I've had three surgeries in six months...I keep repeating that to myself in my head. Eight weeks of missed work, cancelled lunches with friends and family, yet another event to add to the medical history. I recently went to the ER because of post operative chest pain (I was fine), and explaining my medical history felt like recounting the last season of Game of Thrones. "Man, you've been through the ringer!" 

Tell me about it. 

When I list out everything that has happened since my first surgery in 2012, I get a little overwhelmed. Have I really been through that much? A surgery, a round of Lupron, bone density loss, hair loss, starting trying to get pregnant, a round of Clomid, a ruptured endometrioma, taking medical leave from graduate school, an excision surgery, a miscarriage, going back to school, another two endometriomas, a blocked ureter and resulting cystoscopy, another excision (with surprise bowel resection), a cholecystectomy...

It's enough to keep anyone up at night. Is this real life? Is this reality? Someone wake me up. 

But no...I'm already awake. Over the past week, I've struggled with insomnia. As often happens during my recoveries, my sleep schedule became very skewed. At the worst, I went to bed at 7am and slept until 4pm. I felt like I was becoming an owl. The inactivity and inability to enjoy the things that usually keep me busy (working as a nanny, sewing in my free time, getting out and about to run errands and spend time with my husband) was driving me batty. But I realized what I needed. 

I needed to recharge. I needed to remind myself that the past does not define who I am. It doesn't matter how many tough things that happen in life...tomorrow is a new day. Yeah, a lot has happened in the past two years. Yes, it IS a lot to deal with, and I depend on my support systems to help me get through it. I do get really down sometimes. That doesn't mean that it will be like this forever. My life is wonderful, despite my chronic illness. Those days were tough, and I'm still recovering from my surgery. Heck, I'm still struggling with adenomyosis, infertility, and pelvic floor dysfunction, but I also have an amazing, supportive husband, a job that makes me happy, hobbies that give me a sense of accomplishment, and a whole lot of people who support me. 

So when I was still awake at 3am on Sunday morning, I embraced it. My husband and I jumped in the car, drove 2.5 hours to the Kancamagus Highway, and did something we love to do together: have an adventure! 

I reconnected with my husband by getting out and enjoying a beautiful sunrise and fall foliage. For the day, I forgot about my problems (even though I still needed a pain pill for mind numbing cramps). They didn't go away, but the next time I'm stuck in bed, stewing on whatever happened again, I have these amazing photos to remember that my life is amazing. Challenging, yes...but I am blessed. Because I'm living with a chronic illness, I know I'm going to have tough days. However, I try to remember that tomorrow is a new day...the sun will still rise, and I will have another day to keep looking for ways to relieve the pain and enjoy myself.  

And I encourage you to as well. Do something today that makes you happy. Take some pictures, document it, and when things get overwhelming, look back through your photos and remember...

Today was tough, but each morning the sun rises bringing the hope of a new day.

I know March is six months away, but I wanted to share with you our plans for Endometriosis Awareness Month 2015! Rubys on Parade will be our month-long campaign to raise awareness for Endometriosis while bringing you weekly prizes! 

Here's how it will work. Every day in the month of March 2015, we will be posting awareness photos featuring Ruby the Endo Roo and facts about Endometriosis via Facebook and Twitter. You, our followers, can join in our parade by sharing your own awareness photos featuring YOUR Ruby the Endo Roo and using the hashtag #RubysOnParade. We encourage you to utilize whatever social media venue you'd like. We hope to flood social media with our favorite kangaroo! 

Here's the fun part! Each week, we will pick the follower with the most creative contribution to the parade, and award the creator with a prize, including products from our Etsy Shop  (Etsy.com/shop/AskMeAboutMyEndo). At the end of the month, a final winner will be awarded with a TOP SECRET GRAND PRIZE! 

We will share more details about how to enter closer to the event, but until then, start brainstorming and even have a small photo shoot so you have your images ready in time for March. 

We at AMAME are stoked about this fun, positive awareness campaign and the chance to thank our followers for participating! We hope that you will join in the fun and help us raise awareness for this debilitating disease during Endometriosis Awareness Month!

Dear Shutterfly,

You have once again left me hovering between anger and despair after receiving an email advertisement urging me to order a photo book of my baby's sweet face and her first moments. 

I don't have any photos of my baby's sweet face, or her first moments. I can't fill my home with memories of my baby's first year because my baby did not survive past 6 weeks gestation. The photos I have documenting my pregnancy still bring tears to my eyes. I have an empty nursery decorated with handmade curtains and carefully selected mementos of trips taken to Disney with my husband, a quilt made by my mother, an afghan made by my grandmother, a wooden key whittled by my late grandfather.   

This nursery exists because I couldn't bare to look at that empty room any longer after I lost my first pregnancy, a pregnancy I had desperately longed for, battling stage IV endometriosis, for which I have had three surgeries in two years. That empty room reflected my empty womb, devoid of life, a reminder of my failure. I've since decorated it and find hope and peace imagining a day when it will be filled with the laughter of either a biological child or a child born in my heart through adoption. 

I suffered an early loss, and unfortunately made the mistake of signing up for an account on The Bump to track my pregnancy before we really knew whether the pregnancy was viable. I guess I was just so overjoyed at finally, FINALLY getting my wish! So eager to plan for my long-awaited child. But like many women, I found out it was premature, as was my baby's departure from this world. 

I left a message as to why I was canceling my Bump account after my loss, in the hopes that they might have some keyword trigger that would stop the flood of ads for diapers and chord blood banking. Silly me! I had hoped when I cancelled my account with The Bump and requested to opt out of any future emails, I might have spared myself the heartache of receiving updates of how far along I ought to be (as if I wasn't still counting the weeks leading up to my due date). A few weeks before my due date, I received a packet of magazines geared toward expectant mothers, which I threw into the trash immediately. A little pang hit my heart, but I pushed it aside. I received an offer for a free breast pump, and actually considered ordering one anyway, you know...for the future. Heck, I might need it someday! There's still hope! For the most part, though, the ads stopped coming when I opted out...but not yours. 

No, Shutterfly has sent me multiple ads now, although I swear I opted out months ago, reminding me of my early loss and the baby that should be keeping me up at night. In particular, there was a beautifully thought out hard copy ad welcoming my newborn into the world (don't forget to document these early days and save on a photo book!). Really, the quality of that ad was top notch. Instead, I'm up tonight with insomnia, fired up because of your emails.

The straw that broke this camel's back happened in the last 24 hours. I was frustrated, but assumed I must have forgotten to submit my request to be taken off the mailing list, when I opened the email yesterday. It's possible that I misremember...it was a hectic time, and there were so many emails to opt out of. It is truly overwhelming how many companies swoop down on expectant mothers! 

I don't need or want any more of your reminders of where my baby should be today, and all the moments I am NOT documenting and ordering prints of from your website. Yesterday, I opted out AGAIN from receiving "valuable money-saving offers and exciting promotional emails" because I did not want my loss rubbed in my face any longer. I need to focus on the future, and hold onto hope of future motherhood.

Yet, early this morning, as I chatted online with other women struggling to conceive and considering adoption, that familiar ping went off signaling I had another email from Shutterfly. And what do you know...another email urging me to "fill your home with memories of your baby's first year" and turn my birth announcement into a piece of art.

Less than 24 hours after I opted out. 

Shutterfly, this has to stop. On November 30th, just two months from now, I will be faced with the anniversary of the greatest loss I've ever experienced, weeping in my bathroom as my baby slipped through my fingers like so many grains of sand. The last thing I need is an email showcasing your wonderful photo books and souvenir mugs at a 25% discount PLUS FREE SHIPPING! 

When a customer opts out, please...stop sending emails. Offer a space for the person to list the reason they are opting out (because I do enjoy ordering photo books for my wedding and vacations!), and maybe you will spare thousands more couples the heartache of remembering what might have been. 

Please...keep in mind the 1 in 4 pregnancies that end in miscarriage, and change the way you market to expectant parents. 

And maybe, just maybe, I'll utilize your services when I really DO have a sweet smile to cherish.

Sincerely,
A Valued Customer 

As some of you might know, I had emergency gallbladder surgery last week, just 10 weeks after my excision surgery for endometriosis. This makes 5 surgeries in just over 2 years, which feels like...a lot. As you might imagine, my husband and I have sort of created a bit of a routine for making recovery as smooth as possible. Here are our tips:

1. Be prepared!
Of course, there's no real way to prepare for a last minute surgery, but the more prepared you can be, the easier your recovery will be. Whether you are having local or out-of-state care, there are a few things you can stock up on beforehand so that you will have everything you need at your fingertips after surgery. Reducing trips to the drugs store is definitely one way to keep your recovery period as stress free as possible! Check out our blog and video of what to pack to be prepared. 

2. Schedule to have help during the first week
The most important thing to have during your recovery is someone to help you through the first week. This might be a spouse, friend, family member, or even a home health aide. Whether you have a simple diagnostic surgery or a complex case that involves organ removal, you're going to need help getting home, moving around, cooking, cleaning, and monitoring for complications. A caregiver can help keep track of your medications, make sure you get an appropriate amount of exercise and rest,  and stock your fridge with healthy meals that can easily be microwaved. If your caregiver is able to work from home, this is a great option so that they do not need to take sick time or family leave. 

3. Keep moving...a little at a time!
Although it may sound counterintuitive, getting up and moving every two hours promotes healing and helps eliminate gas pain (gas which your surgeon uses to inflate your belly during surgery may remain and cause pain). Start slow, and make small goals, like walking on your own to the bathroom, then the hall, then the nurses' station. While you're in the hospital, nursing staff will help you with this part, but you should keep it up even after you are discharged. I find it refreshing to go for a daily evening walk, say around the block, once I feel up to it. It really helps to get out of the house, even if it is only for 10 minutes. 

4. Be flexible
You may have had some idea of what your recovery might be like when you scheduled your surgery. I can tell you that it can be upsetting to wake up and find out you have several days in the hospital you hadn't planned for, or complications happened and you'll need to wear a drain tube for a couple days. Surgery is unpredictable, even with the most skilled hands, so expecting your recovery to be picture perfect is setting yourself up for disappointment and frustration. Your doctor may have told you that you could return to normal activities after a certain number of days. Don't hold yourself to these expectations. Each surgery is different and each recovery is different (trust me...none of my recoveries have felt the same!). I typically try to plan to be at home for 2 weeks after surgery. Even if you feel better, remember that fatigue is common after surgery. Just like the previous tip, take things one day at a time and make small goals for yourself. If you have a more extensive surgery, you may even want to schedule 4-6 weeks at home after surgery, and may want to return to work part time at first. 

5. Have some savings to cover any loss of income
If you are self-employed or do not have paid sick leave, you'll want to make sure you have a financial airbag in place. You don't want to rush yourself back to work before you are completely healed, and having some savings to fall back on will ease this burden. 

6. Splint Your Belly
No one told me about this tip the first time I had surgery, and I couldn't understand why I was in increasing amounts of pain. Your abdominal muscles need to heal before they can comfortably support the pressure of holding you upright. Hugging a pillow to your belly or wearing an abdominal binder when sitting up and walking around makes a big difference! Also, you may think that returning to a desk job will be easier than a job where you will on your feet. Not necessarily. Sitting upright puts a lot of pressure on your abdominal muscles, which have been cut during your surgery. Putting too much pressure on your belly before you're healed can become very painful. Like everything, take things slow!

7. Avoid clothes that put pressure on your belly
Long, flowing dresses, leggings and tunics, or drawstring/elastic waist shorts/pants are the most comfortable. I find these to be essential during recovery. I also avoid bras with underwire for a little while. Whatever you wear, just make sure it is comfortable!

8. Pamper yourself when you can
If you know you're having surgery, maybe you get a nice haircut beforehand. Maybe you have a friend come over and give you a mani/pedi while you're resting at home, or check out a new book and some movies from your local library. Be kind to yourself, and do something special that will makes you feel good!

9. Make a little "nest" where you'll be resting
Ok, this sounds silly...but hear me out! After you've had pelvic or abdominal surgery, it can really hurt to roll or be jostled in bed. I make myself a little nest of pillows and bed bumpers so that I am not involuntarily tensing my muscles. I also have some comfort items nearby (Ruby, of course, and my 1 liter double walled mug they gave me at the hospital!  I don't know why it comforts me, but it does). Make this space your oasis, full of things that make you feel calm and happy. You might even use some aromatherapy to keep your mood lifted. 

10. Don't be afraid to call your doctor
After my first surgery, I called my surgeon's office almost daily. Was it normal to have so much pain? Is this drainage healthy or sign of infection? When do I remove the steristrips? What's that little string in my incision? Obviously, if you have a lot of questions, you should schedule an appointment to speak in person, but the office can answer any quick inquiries pretty easily. While your first instinct might be to ask in an online support group, your health care is ultimately a matter to discuss with your physician. Surgeons typically have an on-call doctor after hours that patients can call with questions. However, if you have a doctor who is not helping you post-operatively, it might be time to find someone who will. 

11. Trust yourself!
You know your body best. If things don't feel right, follow your instincts. Listen to your body when it tells you it needs to sleep all afternoon, or you're worried something might be wrong. Keep the lines of communication open with your surgeon, and trust your gut! ;)

I hope these tips help you as you heal! Good luck with your recovery, and please share any tips that have helped you after surgery for endometrisois!

10 weeks ago, I had my second out-of-state excision surgery for Endometriosis. Surgery itself can bring on a little anxiety of the unknown (What will the hospital be like? Will they find endometriosis? How will I feel afterward? Will I have to have a catheter? Am I making the right decision?). The last thing a patient needs to worry about is whether or not they have packed everything they need. This video and blog post will help you as you prepare for your surgery, and includes a list of things that helped me before, during, and after my surgery. Also, check out our 11 Tips for Laparoscopic Surgery Recovery!

Your surgeon may require you to complete a bowel prep , which may reduce the risk of infection if there is an injury to the bowels. You will also need to bring some first aid items that will help during your recovery period. To survive your bowel prep and post-op, you will need:

OTC Pain meds - Tylenol, Tylenol PM (no NSAIDS before surgery!)
Allergy Meds - Benedryl, Clariton, inhalers (be aware of different climates and pollen levels!)
Tummy meds (for prep, and post-op nausea) - Antacids, gas relief, anti-nausea, fiber, peppermint tea
Vitamins and herbal supplements
Narcotic pain meds - I got mine from my PCP before I left, just to be sure I would have them
Sore throat relief (breathing tube irritation) - cough drops, chloraseptic spray, tea with honey
Tushy care (for your bowel prep) - Desitin, moist wipes
Pill cutter - sometimes you don't need a whole pain pill :)
Thermometer - to monitor for post-op fevers, or if you're trying to conceive, like me, and are still charting your basal body temperature
Heating pad - the Endo Patient's best friend! I use it on my neck to help me relax and fall asleep naturally. You'll want to avoid using this during your first few days of recovery, however, so that you do not damage the delicate tissue during recovery. You can purchase one of our natural heating pads, for which $1 of each is donated to excision surgery fundraisers, from our Etsy Shop!
Miracle Balls - recommended by my physical therapist, these work like acupressure to release tense muscles

Of course, after surgery you will need to be prepared to care for your incisions and any vaginal bleeding. You may have a hysteroscopy to check for uterine fibroids or polyps. Some people have asked about bleeding during a lap...this is totally ok! If you are on your period, it will be easier for the surgeon to see your endo, since it will be responding to your body's hormones. You may also have bleeding anyway. The surgeons deal with this all the time, so don't worry or feel embarrassed! I prepared with:

Hospital pads (for heavy bleeding, I had these left over from my cyst rupture)
Overnight pads
Gauze pads for cleaning your incisions, and to absorb any drainage (I had a lot from my belly button). You may also want someone to help you the first time you change the dressing...I nearly fainted!
Breathable adhesive gauze pads, which I found to be the best for covering my incisions! The larger size is best for the belly button incision. Your incisions need to be covered to be kept clean and prevent infection, but they also need to have air to dry out. The adhesive gauze pads, with an extra gauze pad underneath, work very well. 
Smaller sized adhesive breathable gauze pads - for smaller incisions
First aid kit

Even though you'll be resting and recovering for a while, you'll still want to feel your best! You might want to bring:

Face wash, moisturizers
Make-up and remover
Body wash
Shampoo/conditioner
Eye drops
Nasal Saline
Shaving cream and razors
Bikini trimmer (to make post-op bleeding a little easier, a trim goes a long way)
Toothbrush/toothpaste
Brush and comb
Deodorant, body spray 

Here are some other items to pack and tips that may make your trip even easier:

• You will also want to pack long, flowy dresses, which are the most comfortable when your belly is bloated and tender. 
• Entertainment: don't forget to pack/load your tablet or laptop with a great playlist of relaxing music (I use my meditating music on Spotify), and some digital copies of your favorite movies!
• Reading materials! I brought my iPad with my Kindle app, along with books a friend let me borrow. 
• Medical records pertaining to pelvic pain, including any imaging. Mine actually filled an entire binder! You will also want to have any color photos of previous laparoscopic surgeries, which will help your surgeon, in conjunction with your medical records, lab-work, and exam. I highly suggest that you order your FULL medical records and read through them thoroughly! You should be an expert on the subject of your body! I was shocked by some of the things I learned. I had no idea that my first documented ovarian cyst was complex, which could have been an endometrioma (it just so happened that my 7cm endometrioma and my most recent complex cyst were on my left ovary). I think it is invaluable to also know what your doctors are putting in your permanent files. I learned that a psychiatrist I saw at a pain management clinic before my diagnosis wrote that my pain was likely psychosomatic (or "in my head"), and that I should be reevaluated before given prescription pain medication (a very common and disrespectful dismissal of endometriosis patients complaints of chronic pain). Knowing all about your medical history and having it in writing will help you to advocate for proper, respectful treatment of your disease. 
• One great thing we encountered upon our arrival at our hotel was that when we mentioned that I am having abdominal surgery, and staying for a week recovering, our hotel offered the use of a mini-fridge and a wheelchair for free! 
• Another great tip is if you qualify as an elite member, either through personal or business travel, some hotels offer an executive lounge where you can find complimentary coffee, tea, cookies, toast, jams, honey, sodas, and other treats. You might also consider getting a room in a hotel that offers a complimentary breakfast. You may be staying a while, and any way to eat for cheap, or better yet, FREE, will help defray the cost of traveling for great surgical care. 
• I am on an anti-inflammatory diet (no gluten, soy, dairy), but I hold off during my prep. As I learned during my bowel prep for my colonoscopy (which went very smoothly), eating low fiber foods and mostly liquids will help make the bowel prep much easier. I prepared last time by only eating applesauce, yogurt, cheese, eggs, white bread, butter, and honey about 4 days before my prep. 2 days before my prep, I ate only clear liquids, such as broth, jello, popsicles, and juice (especially Gatorade). Please consult with your physician about what they recommend to make your prep go smoothly, and also check with your physician before making any dietary changes. 
• Finally, we brought a memory foam mattress topper, since hotel beds tend to be stiff, and for me, uncomfortable. We bought a cheap body pillow and asked for extra hotel pillows to put on either side of me during recovery. I found that propping my body on both sides kept me from tensing my sore abdominal muscles, which caused more pain. Your recovery period will go quicker (and thus, traveling home will be easier!) if you get up every 2 hours and move around a little bit. This can also help with the gas pains, caused by the gas they use to inflate your belly. 
  
• Here are some items that fellow endo patients have found useful during while preparing for their surgeries:
  pillows, small blankets
  ice pack and cooler (if traveling by car)
  books/laptop/activities such as Sudoku or journal
  Gas-X and stool softener
  Throat lozenges, cepacol, products containing benzocaine
  Ginger and peppermint tea for gas pain
  Bible, faith, trust, and prayer
  Thermos of organic tea and raw honey
  Organic biscuits, green powder for nutrients, nutrition supplements
  Aromatherapy, music, compression socks
  Phone charger

I hope these tips will help you prepare for your surgery, and help relieve some of the stress of packing. If you have tips to share, post them in the comments!