Open Letter to Senator John McCain

Senator McCain:

My name is Heather Pickens and I reside in Phoenix, AZ. I am 27 years old and am writing regarding my illness, Endometriosis and spreading awareness. 

On August 26, 2014, I will go in for my first excision to (hopefully) fully treat my disease. I am not writing this out of sympathy, those that truly know me understand that I am a strong woman. As an emotionally strong person, it is very difficult to speak of my weakness. However, being silent has not made any advancement in the treatment and cure of endometriosis. I am sharing my story for awareness. 

Endometriosis is a serious gynecological disorder that causes severe pain, bladder and bowel issues, painful intercourse and infertility. The only way to diagnose and treat the disease of endometriosis is by a surgical procedure. It is also a progressive disease. 

Since the age of 13, I have had symptoms of endometriosis. I ignored and pushed through my symptoms until I was 25 and hit a road block. I was bed ridden from the pain and almost lost my job due to the fact that I was off work for six months.

During those six months, I could not function. Showering resulted in me returning to bed with damp hair. I couldn’t keep up with my house work properly and took a huge hit financially. My husband helplessly watched over me during one of the darkest periods of my life. 

Since my diagnosis via laparoscopic surgery on November 7, 2012 I have had several painful treatments, physical therapy, four surgeries (one of which resulted in an overnight hospital stay, and another resulted in being sent home with a catheter). Although I was able to become pregnant, I had a very traumatic labor that resulted in a cesarean. Four surgeries in less than two years, and my excision on August 26, 2014 will be my fifth surgery. This is unacceptable. 

Young girls, teens, and women are suffering. It is time to break the silence.

My story is not uncommon, and is definitely not the most tragic. Many women are ignored, made to feel like drug seekers and are left infertile. Others have lost their babies after pre-mature labor due to the disease. It is the women that have suffered the most due to this God-awful disease that I will use the voice and experiences that God gave me to speak of this disease. I will never stop talking and raising awareness because I never, and I mean NEVER want my daughter to experience a single moment of physical or emotional pain that endometriosis can cause. 

Please support the women of Arizona and the 176 million women worldwide who suffer from endometriosis in declaring March as Endometriosis Awareness Month. 

Numb

It's been an extremely long time since I have posted, so I want to apologize first of all. Life has been insane lately, both good and bad.

Good, because I welcomed my beautiful baby girl Eliana into the world via c-section on January 12th, 2014. She is absolutely perfect!

Bad, because I am becoming numb to life. Endo is trying to destroy my life once again. Since giving birth last month, my pain scale has been through the roof. I thought that my endometriosis symptoms were bad during pregnancy, but endo is reminding me just how ruthless she is! I am numb to the fact that my so called Endo Specialist (who is on numerous excision specialist lists) does not seem to care that my endometriosis is spreading and I need surgery. Since his office will not return my calls, and I will not be seen until May, I have ultimately decided to send my records to Sinervo, Dulemba, and an up-and-coming specialist in Utah. Even if insurance claims do not work out, I will have a report from Sinervo to show my current specialist in May in order for him to get the ball rolling. Hopefully I can get my life back, for my daughter.

P.S. If you would like me to post Ellie's birth story, leave a comment below!

xo Heather

Impatiently Waiting

A year has come and gone. I was officially diagnosed with endo on 11-7-12 and the last year has been bittersweet. I continue to struggle with my illnesses, but now I am carrying my daughter under my heart. There is no better feeling in the world.

I am currently 29 weeks, 5 days pregnant and I can honestly say that I never thought I would see the day when I had gained 24 extra pounds from pregnancy. I am feeling so blessed despite the new found weight gain. 

I do have to admit that I am growing very impatient and am ready to meet her. Each day I am getting more and more anxious for my pregnancy to be over and hold her in my arms. I do not want to sound ungrateful, because I am pregnant. I never thought that I would be able to experience pregnancy and being a mother. For that I am extremely grateful. However, as my baby girl and uterus continue to grow, I am struggling more and more with daily life. My expanding uterus is pushing on my bladder more and my muscle spasms have been almost unbearable. I say almost, because somehow I am managing to still force myself out of bed four days a week and work twelve hour shifts. 

I honestly do not know how I am doing it, and am constantly surprising myself at the end of each day. My motivation has been that I do not have a lot of vacation time after being off for five months last year. I want as much time as possible with Ellie. 

In other news, we purchased her car seat and jogging stroller recently. I am super excited about taking walks with her and am very impressed with the ipod dock on her stroller so she can listen to music on walks! Her nursery is starting to come together nicely and I cannot wait until her room is complete!

Do you have any experience with pregnancy and illness - how did you cope? Also, leave a comment below if you want me to share pictures of the baby room when it is finished!

xo Heather

P.S. I'll leave you with a picture of my super adorable nephew (he was making faces at his auntie)!

 

Anything Can Happen

It has been a long time since I have updated my blog, so I want to apologize first. I have been busy with work and doctor appointments. As some of you are aware, I am pregnant! In two days, I will reach the six month point. I do not know how to explain it other than a God thing. It's really a miracle, and I will never know why God granted me such a huge blessing. I will never know why this happened to me, because things like this just do not happen for me. I am so happy and so ready to meet my baby. 

 As far as the gender, we do not have a definite answer because our baby continues to be in a difficult position to identify boy or girl parts. We have an idea, and I have been worried about sharing it, but have decided to go with it. After two ultrasounds, we believe (although not 100% sure) that we are having a little girl!

Anything can happen. My baby and I are living proof. 

Besides, the pregnancy I am struggling with work and my illnesses. As some know, I work with an international transportation company that keeps me extremely busy. I work twelve hour shifts, and we have entered our busy season. It is stressful to say the least. It doesn't help that I am very ill. I am motivated to work up until my due date (January 24) so that I have more time with my daughter, but as I get further along, I may change my mind. As of now, that is the goal. 

Endo and PFD symptoms continue to be awful. I still have ovary pain and my muscle spasms have been really painful and more frequent since my uterus and pelvic area has been expanding. I am not taking any medication for these symptoms other than tylenol, which is a worthless drug. 

IC is really kicking my ass. I am inflamed, urinating even more than usual, and constantly have painful flares. When I cannot tolerate the pain anymore, I take pyridium which offers some relief. For those not familiar with IC and pyridium, basically it just coats my bladder temporarily. I consider it my "band-aid." For those wondering, I have gotten the okay from several obgyns and the pharmacist to take that prescription, but I still only do it on an as-needed basis when the pain is too much to handle. I only really take it when I am working and the pain makes it too difficult to perform my job. 

Pregnancy symptoms have really been the least of my worries. After I got over the first trimester hump, it has basically been smooth sailing. I do get headaches every few days, but I manage. The two biggest symptoms have been hunger and fatigue, but the fatigue is also associated with my pain level. 

That's really it for now, but I wanted to ask for your opinions. I have spoke with other endo sisters who have mentioned that I volunteer for a c-section and have an excision while under. I was curious to hear your thoughts, opinions, and/or experience on this. Please let me know in the comments below!

xo Heather

P.S. I almost forgot to mention that my sister had her baby! My handsome nephew was born on August 30th. He is absolutely perfect! 

I Samuel 1:27

My grandparents came in to town to visit the night of June 10th. They arrived in town late that Monday evening, so we made plans to meet up the next morning. Tuesday morning (June 11th) I woke up feeling very ill. My grandparents arrived at our apartment shortly before 9am and I did not want to be a pain and complain about the way I was feeling. Instead, I ignored the way I was feeling and we made plans to drive to Tombstone, AZ. 

We hopped in the car and drove the three hours it takes to get to Tombstone - where it was also pushing 110 degrees. Tombstone is a historic western town deep in the desert, so there is a lot of walking and site-seeing in extreme temperatures. I was getting worse as the day went on, but kept trucking on. At one point, a women who worked at one of the historic buildings looked at me and asked "Are you okay? You look pale." I just smiled and said I was fine, but I was getting worse.

We eventually ended up in a building that had air conditioning and we purchased bottles of water. After several hours of making our way through the tourist trap, we got in the car and made the drive back to Phoenix. After eating supper at Burger King, I felt much better and thought that maybe I was just hungry.

The next morning, I woke up quickly and ran to the bathroom where I threw up. I was immediately irritated that I couldn't decide if it was an endo-related vomit or if the heat had gotten to me from the day before. Still, we had plans to meet up with my grandparents again and we drove to their hotel. I took a shower, and pushed on. 

After talking for several moments, we decided to drive the Apache trail and see some of the lookout points. On one of the lookout points, we had to walk 500 feet to see the view - either the walk was more than 500 feet or I was just too sick to handle it, because I felt that I could pass out. Walking back to the car, I was so nauseous and weak I almost wondered if I would pass out. 

I hopped in my grandparents rental car and took a nap. I slept most of the drive that I had been so excited to see (and the views were breath-taking). I also took two anti-nausea pills that were not taking the edge off. Something was really wrong but I did not want to ruin my grandparents first trip to Phoenix, so I ignored the symptoms.

Fast forward two days, after my grandparents had left. I called in to work, because my nausea was out of control. I did not know what was wrong with me. After several days of misery, I realized that I needed to go to the Emergency Room.

At the emergency room, I was immediately given a room where a doctor heard all of my symptoms and medical history. The doctor told me that they wanted to give me a pregnancy test, but I did not think anything of it.

Until....

The doctor came in to tell me that my urine test was positive for pregnancy. She told me that she was going to send me to ultrasound to see the baby. I was in a state of shock, then my husband looked at me and smiled. That is when the tears began to flow.

I was a woman, with endometriosis, a blocked fallopian tube and a short supply of eggs who had been trying to conceive for five years. I had began to accept that it was never going to happen, but there I was. 

Getting my first ultrasound on 6-14-2013 to see my baby. 

Our baby. 

I was able to see our baby and hear our little one's heartbeat. It was the most amazing sound ever. 

So there you have it, the infertile woman behind Hello Endo is pregnant. 7 weeks to be exact. I could not be happier. 

The reason for 5 days of nausea was morning sickness - I am officially a mommy.

xo Heather 

For this child I prayed (I Samuel 1:27)

Endo Happy: Are You an Endo Warrior?

Image Courtesy of Katie with Endo Happy

 An Endo Sister's Guide to Living with Endometriosis

• An "EndoWarrior" eats healthily, says no to junk food and educates herself about the "EndoDiet" and incorporates it into her daily life knowing that it may help with her symptoms and long term care.

• Empowers herself by finding out as much as she can about Endometriosis and knows she deserves and is entitled to the best medical care available to her. She doesn't accept no for an answer from any medic and gets a 2nd/3rd opinion if required.

• Knows that there is no 'normal' everybody is on their own journey and doesn't compare her life to anybody else's.

• Is proud of every scar on her body, she knows they represent the battles she had fought and won.

• Takes time to rest and relax. She accepts that Endometriosis is disabling at times so doesn't try to do everything, instead spends her valuable time doing the things she enjoys and says no to the things she doesn't or that give her stress.

• Takes time to exercise (if possible) at least once per week as she knows it makes your mind and body stronger.

• Promotes awareness of Endometriosis by telling friends, family and others about it.

• Continues to work towards the goals she has in life, she knows that it doesn't matter how long it takes to get to them just that they are achieved.

• She acknowledges that depression is common among chronic illness sufferers and talks about her feelings, and asks for help when required and knows it is okay to be emotional and cry!

• Lastly, she knows that she is perfectly 'imperfect' and feels proud of everything she has achieved! She accepts herself as she is and knows she is worthy of love, kindness and respect.

                                          

For more words of encouragement on surviving a life with Endometriosis, please follow Katie on Twitter!

xo Heather

Healthline: How to Reduce Endometriosis Symptoms through Diet and Exercise

Endometriosis is a painful condition that affects between five and ten percent of women and can make the discomfort of menstruation much more extreme.

During the normal menstrual cycle, the endometrial tissue grows inside the uterus and is expelled during menstruation. Endometriosis occurs when this tissue grows outside of the uterus, sometimes attaching to other organs and causing significant pain, bleeding, and inflammation.

The symptoms of the condition tend to get worse with time if they go untreated, so treatment is vital to combat this condition. In addition to medicinal options, diet and exercise have been shown to have a beneficial effect in dealing with the symptoms of this condition.

Benefits of Exercise

In general, the benefits of exercise are somewhat mixed in terms of their success in alleviating pain that results from endometriosis. Among the side effects of this condition are extremely painful periods, pelvic soreness, fatigue, and pain because of exercise. Because of that, women who experience endometriosis are typically hesitant to pick up new exercise routines to combat the symptoms of their condition.

Still, exercise can have certain positive effects. One of the benefits comes before the condition develops. Research indicates that women who exercise vigorously are far less likely to develop endometriosis, although there is less of a pattern for women who exercise less.

For women that have already developed the condition, some level of exercise may help alleviate some of the pain. During exercise, the body releases endorphins, which are natural chemicals that relieve pain and improve mood. These feel-good chemicals work for everyone doing exercise—not just those with conditions that cause significant pain—but this endorphin production can be especially helpful in dealing with pain as significant as that caused by endometriosis.

In general, light to moderate exercise is advised for women with this condition. Exercise beyond that may be impossible, as the body experiences more pain with high levels of exertion. Exercises like walking and yoga, however, require relatively little stress on the body and can produce endorphins to provide some level of pain relief.

Dietary Suggestions

Diet appears to have a much more significant effect on symptoms, so it is important for women that experience this condition to focus on regulating their diet with the proper nutrients.

Certain fatty acids can aggravate pain that is caused by endometriosis, and others can help to relieve that pain. The bad kind of fatty acids are found in foods like meat, dairy, and palm oil, so women with endometriosis would do well to cut these foods out of their diet as much as possible. On the other hand, omega-3 acids fall in the good category, so it helps to consume plenty of food that includes these compounds. Examples of foods that are high in omega-3 fatty acids are salmon, olive oil, and legumes.

Cutting meat and other animal products out of your diet carries the risk of having an unbalanced diet, with too little protein and calcium intake. Having a balanced diet is vital for stabilizing your hormones, and hormones are ultimately responsible for the development of this condition. Thus, balancing your diet with the right nutrients is vital. To keep your protein levels high, replace meat products with foods like tofu, nuts, and fish, and replace the calcium that you get from animal products with leafy greens, almonds, and tofu.

There are a few foods that you will want to avoid in case of endometriosis and other conditions, like arthritis. Caffeine and refined sugar are two of them, as these ingredients tend to result in nutrient loss, allowing additional pain and inflammation to occur in the body because of endometriosis.

Valerie Johnston is a health and fitness writer located in East Texas. With ambitions of one day running a marathon, writing for Healthline.com ensures she keeps up-to-date on all of the latest health and fitness news.

                                       

Special thanks to Valerie Johnston of HealthLine for sharing such an informative post.