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. 

Update: 1/30/13

It's just after midnight which means that I will be in surgery tomorrow, January 31st. I will be having my first IC surgery (cystoscopy with hydro-distension) and I am extremely worried.

I have also been having a personal issue going on that I do not really want to share, I am just hoping that I can make it through and everything will be okay. 

I am also close to going back to work, and I really hope this surgery allows me to do so. I am going stir crazy. If I am unable to get back to work after this surgery, well, I just may kick rocks.

I also received an e-mail from my RE saying that I won't be needing another HSG test to check on my Right tubal blockage. I guess that means there is no hope.

I will also be going back to school in the summer to somewhat make-up for the two semesters I have missed because of my health. I will continue to keep trucking along with my degree, but until that happens, I am happy with the company I work for. They have been very loyal to me as an employee, and I will continue to be loyal to them.

I don't really have a lot to share at the moment, because I am working on getting everything in my personal life back on track. I will post pre/post op pictures soon.

xo Heather

Surgery #2

On January 31st, I will have my second surgery. My first surgery was a laparoscopy for endo, but this surgery is for my IC symptoms. 

I will be having a cystoscopy with hydrodistention. This is not my first cystoscopy, but this will be a much more invasive procedure. If you would like, you can read about my first cystoscopy here. Thankfully, I will be given anesthesia this time!

 I am very worried about this procedure. I had surgery just under 2 months ago and worry that I may put my body through too much, since I will have a robotic laparoscopy in the spring that will last several hours (more on that in another post).

On a recent doctor's visit, I was told that I will most likely be sent home with a catheter after the hydrodistention surgery. Ever since being told that, I have been very upset.

I do not know why I should be sent home with a catheter. Why can't they keep me overnight or as long as needed for my bladder to heal before sending me home? As much as I want to feel relief and to get back to work, I will not go to work in the shape that I am in.

I am putting myself through so much to "feel better." I know that I am not alone, but I am very scared. This whole experience has been terrifying. 

As the days get closer to surgery #2, I am getting more and more nervous. I am even more scared for my upcoming surgery then I was for my laparoscopy. I also have been experiencing anxiety and depression. I am in pain, nauseous and weak all of the time. I swear that my endo is spreading so much that it is pushing on the nerves in my back. I keep getting a painful tingling sensation in my back.

I am also missing my parents and sisters. I wish that they could be here for my upcoming surgeries, but I know that it isn't a possibility. I have my husband, and he has been amazing through this whole experience. I am so thankful for him.
 

 Please keep me in your prayers. I am trying very hard to remain strong. But, even the best fall down sometimes.

Maybe if I have a good cry, I will feel better. 

xo Heather 

Choosing a Doctor

Every Endo Sister that I have communicated with has a story or stories of a bad doctor or specialist experience.

I was officially diagnosed with IC and PFD in September 2012 and Endo in November 2012, and have already experienced horror stories from the urologist that diagnosed me and the gynecologist that performed my initial laparoscopy. If you would like, you can read my stories here and here. 

I never want anyone to have terrible doctors, or to experience the awful stories that I have learned of.

 Since I want everyone experiencing pelvic pain to choose the best doctor, I have decided to make a list of personal advice. I have contemplated and searched the internet for the best advice that I can give women who are experiencing pelvic pain.  

Here are some useful tips:

Record all of your symptoms in a pain journal

 Be as specific as possible. By doing this, when you have a consultation you can quickly reference your worst days and the location of your pain. Read about journal ideas here.

Keep a food diary 

There are free calorie counter apps that make this easy. If your doctor says that you need to change your diet, you can quickly and easily show the specialist what you have and have not been eating.

Write down a list of questions

Write down a list of questions that you may have during your consultation. Bring this list and make sure every question you have is answered. Make sure you completely understand every response the specialist gives you. It is very important that you leave the consultation fully informed.

  Have ALL of your medical records

Before going to a new specialist, make sure that you have all of your past medical history with you. You can have your records sent to your new specialist, but it is also a good idea to have them on file personally. Another useful suggestion is to always ask for your medical record every time you leave an appointment.

 Do your Research

 There are many endometriosis support groups, endo sisters, and organizations that can help you find an excellent surgeon. Search the internet, and do not settle. Read reviews online, ask co-workers, friends and family. Word of mouth is an excellent way to hear about good and bad physicians and specialists.

Go with your Gut

If you are having a bad feeling about your treatment, stick with your gut feeling. Most likely you are correct, and something is off. If you are seeing a doctor, and do not feel comfortable in their care, find a new doctor. It is the simplest piece of advice that I can give you, but it crucial.

Do you have advice for choosing an endo specialist or surgeon? If so, leave a comment below!

xo Heather   

MedGift

I am a huge MTV fan, it is my guilty pleasure. Diem Brown, who is an MTV reality star was diagnosed with ovarian cancer. Since being diagnosed with ovarian cancer, she has started a foundation called "MedGift." When I found out about Diem's story and her fantastic organization, I wanted to share it with you!

"MedGift" is a fantastic organization that allows people with various medical conditions to create a gift registry of things that are personally needed. For example, if you need help with medical expenses or prescriptions, simply add it to your wishlist. Need help covering the mortgage or rent while you are out of work? Let your friends, families and co-workers know what is needed by signing up for the website. 

For more information about the lovely Diem Brown, check out her biography here. You can also find her on Twitter. To sign up for "MedGift," please go to the website for more information. 

xo Heather  
 MedGift Photo Credit: MTV

Update

I went to my new specialist and got a bad report. It was confirmed that I do have IC and PFD. I was also told that I will have to have another laparoscopy very soon because my gynecologist didn't document the procedure well and didn't send off for a tissue sample of the lesions that he removed. Because of this, I will have to have another laparo very soon to confirm whether or not I do in fact have endometriosis. 

Like the picture shows, I feel like a train wreck. I honestly cannot put into words the way I am feeling right now, so I am signing off - Love you all!

xo Heather

Dr. Oz

Dr. Oz showed a segment about Endometriosis and laparoscopic procedures on his show. In case any of you missed it (like I did) here is the segment.  I am dying to hear what you think! Please let me know your thoughts below!!!

 http://www.doctoroz.com/videos/explaining-endometriosis

xo Heather