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Blogging For Endometriosis – One Year Later

It is so hard to believe another year has gone by and we are celebrating our FOURTH Blogging for Endometriosis Awareness campaign! Virtual high fives all around for those who have been a part of all 4 campaigns!

Blogging for Endometriosis - One Year Later

 

This year has been one heck of a year. There have been some awesome moments getting to watch my daughter start kindergarten and watch her grow and shine through her first season of cheerleading.

There have been some really high moments but there have also been a lot of low moments. Like really low moments. If you would have ever told me before that I would cut myself as a way to ease the pain and anxiety, I would have told you you were insane. Absolutely no way. Now that that has happened, I would much prefer a hug versus an “I Told You” so. There were many times I fell to my knees weeping. The song, “The Last Night” has never been more personal.

This past year I may have lost my footing and my faith may have been shaken but the worst part of this past year was feeling like I had lost my voice.

So many times I felt like I have been been in a crowded room and screaming at the top of my lungs but no one hears me. It has been difficult because I have felt at moments that even my most supportive doctors have stopped listening because they don’t know what else to do.

I have been diagnosed for 11 years and we have tried everything under the sun. Surgeries including a total hysterectomy, Lupron (the level), hormones, experimental treatments, herbs/oil, physical therapy and chiropractic therapy. Nothing has provided long lasting results.

I’m not saying that they don’t care anymore but I feel like they just don’t know what else to say or what to do. The response I get most of the time is that I am “too high risk.” Because of my history of obstructions, I know that makes this difficult but at some point the benefits have to outweigh the risks, right?

The one thing that this past year has taught me more than ever is the need to become your own best advocate. You know your body more than anyone else. If you know something is wrong, then keeping fighting. Keeping pushing for answers even if it means second, third, or fourth opinions. Do not keep silent. Stand up for your health and let your voice be heard.

While the goal of Blogging for Endometriosis includes spreading awareness and education to those outside of the endo community, we know that it just as important to take care of our own and let them know that they are supported, they are heard, and they are loved.

We are a team and we will fight as a team! I love you all & we got this as long as we have each other!

 

Blogging For Endometriosis

write your representative – endometriosis awareness campaign

BLOGGING FOR ENDOMETRIOSIS AWARENESS

As a part of the Blogging For Endometriosis Awareness Campaign, a way you can get hands-on to raise awareness and ask for more funding for research and treatments, take a few moments and write your representatives! We even have a template letter that you can use! You can find out who your representatives are, personalize the letter, and drop them in the mail! For the cost of a couple of stamps, you can help make major strides in the efforts to further endometriosis awareness.

 

Template of letter you can send to representatives:

(The Date)

The Honorable (Representatives Name)
Unites States House of Representatives/Senate
(The Representatives Address)
Dear (Representative/Senator Insert Name),

I am writing this letter to request your support for the following issue that is of great importance to me. I have lived in your district/state for ______ years and vote regularly in elections.

Endometriosis is a disease that has had an enormous effect on me. Endometriosis is a chronic condition with no cure; the most common occurring symptom is pelvic pain, usually occurring just before or during menstruation. Some women have this pain during intercourse, bowel movements, urination or pelvic exams. Other symptoms include infertility, or blood in the urine. Endometriosis affects 172 Million women worldwide during their reproductive years, however the exact number is not known because often times it goes untreated. Currently there is an average of 8 to 10 yrs here in America in getting a diagnosis. Endo is a mysterious disease in which the pain does not always equal the amount of endo found. Many Doctors are uneducated in the different ways in which endo can look, and most Doctors do not keep up on current research and so many myths from 20 yrs. Ago remain. These Myths only complicate treating the disease.

At this time the cause of endometriosis is unknown, there are no definitive diagnostic tools available to clinicians and that leaves many patients suffering for years before receiving a diagnosis or attempting surgery to relieve their symptoms, even then the disease returns after surgery in over 40% of all cases. These symptoms can dramatically affect a person’s quality of life, leading to a loss of mobility, a loss of relationships, and a sense of isolation, as well as the inability to continue to work or conceive a family.

With so much still unknown about this disease, increased research is vital to the understanding and eventual cure. Therefore, I would like to request your support in the following areas:

Encourage the National Institutes of Health to expand the endometriosis research portfolio.
Support funding for the Centers for Disease Control and Prevention to raise awareness about endometriosis and collaborate with community partners on getting the word out about this chronic condition.

I would greatly appreciate your consideration and support on the above items. They are extremely important to me. Thank you for taking the time to read this letter.
Sincerely,
(Your Name)
(Your Phone, Email, or Address)

Letter created by Elisabeth Oas

 

You can also look here to find a list of up to date Congress contact information as well as sample letters and templates so you can make sure your voice is heard!

chronic illness

My Endometriosis-Specific Ultrasound

I promise I had no intuition of dropping off the planet the last two weeks nor did I anticipate not finishing out Blogging for Endometriosis the way I had planned. I have spent so much time beating myself up feeling like there was so much more that needed to get done or that I should have been able to get done. I have looked in the mirror more than once and wanted to put a big L on my forehead. But I am trying to show myself grace. The same grace that I would be offering anyone else who was in the same situation and I am allowing myself to fully accept it.

That said, I do apologize for going AWOL on the last half of endo awareness month! 2014 has most definitely not gotten off to a great start and it seems like the more time that passes, the bigger nosedive my health seems to take. Hopefully all of the recent doctors visits, procedures, and consults will lead to a turn around!

Last week, I had my endometriosis-specific ultrasound. From all of the information that was given to me prior to the ultrasound, this is new technology that is currently only being offered in two locations in the US (here in Charlotte and at the Mayo Clinic in Arizona). This type of ultrasound allows endometriosis lesions and implants to be more easily seen during the ultrasound which can aid in diagnosing and treating endometriosis by not only being a non-invasive way to monitor the endo but also helps provide a guide if surgery is necessary by showing where trouble spots are located. To be able to get a clearer picture of what is going on, this ultrasound requires a bowel prep.

This was all of the information given to me before the ultrasound beforehand. I’m not sure if I had just built everything up so much in my head or what but I was completely let down by the experience. Maybe it was because it was brand new technology or because it is only offered so few places but I just went in with the grand idea of what the ultrasound would look like or how detailed the results would be. Honestly, if I hadn’t been told that this was an endometriosis-specific ultrasound, I wouldn’t have known it was different than any other pelvic ultrasound I have had in my doctors office. There were no large implants seen but smaller implants and scar tissue are still not able to be seen so I felt like we were really no better off than we were when we started. I definitely cried but the doctor reassured me that in no way was my pain being discounted and really validated my feelings and my experience. So far both doctors that I have seen at the Women’s Institute have been great.

After reading the ultrasound results and going over my medical history and ops reports, the team would decide which direction they thought would best to treat my case. If they thought surgery would be the best option, they would call to set me up with Dr S. If they thought an alternative treatment option (such as medication, physical therapy, etc) would be the way to go, they would set me up with Dr M (who did my ultrasound). They called yesterday and I will be seeing Dr S on Friday! I’m both anxious and relieved because I finally feel like we are taking a step toward finding relief. I’m not sure what the game plan or time line is but will definitely keep you updated!

In the meantime, I am prepping for my repeat colonoscopy tomorrow! Including this one, I have done four bowel preps in 6 weeks. Not fun. And because my colonoscopy had to be aborted in February because the prep was ineffective, I get to do a double prep for this one. Awesome. I had to drink 2 bottles of magnesium sulfate this morning and have to drink 4 liters of NuLyte between tonight and tomorrow morning. I want to throw up just thinking about it and I have to start drinking in 15 minutes.  I just keep reminding myself that this time tomorrow it will be all done and I shouldn’t have to do another prep for a long, long time! Keeping all fingers and toes crossed!

Tomorrow’s start time is 12pm so if you happen to glance at the clock around lunch say a prayer or send some vibes!

disclaimer

Information posted here should not be considered medical advice. It is not intended to replace consultation with physicians or other healthcare providers. A New Kind of Normal covers my personal experience and because every person's experience is unique, it should not be relied upon as a substitute for professional healthcare.

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