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Friday, March 2, 2012

Doing My Part

It's March. And March is Endometriosis Awareness Month. Since being diagnosed with endometriosis in January, I have learned a ton about this disease and want to do my part to raise awareness of this incurable disorder. Please take a moment to read this information as it may help yourself or someone you love realize a condition that has yet to be diagnosed. Here's what I've learned about Endometriosis:

  • It's a painful reproductive and immunological disease in which tissue similar to the uterine lining (endometrium) grows outside the womb and implants in other areas of the body
  • There is no absolute cure
  • Affects one million women in US
  • 48% of infertile women have endometriosis
  • Symptoms can include: painful periods, pelvic pain, infertility, pain with sexual activity, gastrointestinal and urinary tract difficulties
  • Some women have no symptoms at all
  • Endo patients have an elevated risk of certain cancers and autoimmune disorders
  • No definitive cause of the disease
  • Can only be diagnosed through surgery
  • Genetics, immune dysfunction and exposure to environmental toxins may be contributing factors to disease
  • This disease is commonly misunderstood, misdiagnosed and ineffectively treated
  • Endo is the most prevalent cause of hysterectomy, infertility and pelvic pain in women and girls
  • The average delay in diagnosis remains an astounding 9 years
  • A patient will seek the counsel of 5 or more physicians before her pain is adequately addressed
  • It is not unusual for a patient to undergo repeated surgeries and embark on different medical therapies; many carrying significantly negative side effects and none offering long-term relief
  • Can affect women from all walks of life ranging from adolescence to post-menopause
  • Can be so painful as to render a woman or girl unable to go about her normal routine

My endo is only stage II and thankfully my pain is manageable. But it is a contributing factor in my struggle to conceive which has brought a lot of pain, sadness, disappointment and frustration. I've met some other bloggers who also suffer from various stages of endometriosis - JameeJoanna and Living our life in cycles. Our stories are all unique but the disease leaves few of us unscathed, whether the damage is emotional, physical or both - I can safely say that endo sucks!

   

12 comments:

Kristin said...

thank you for sharing this! I am trying to figure out what is wrong with me and my gut tells me I have it... having a ultra sound next week

Shannon Elise said...

I have Stage II also Jess and I agree...it totally sucks! Thanks for all the great info.

myfertilityjourney said...

Thanks for posting this, can I repost it on my blog?

Lola said...

I have stage IV Endo. Been having painful periods for years. I still remember the day I got my first period because of the pain I had that day. Doctors always telling me it was normal to have such pain. But I knew it wasn't . I was diagnosed back in 2010.

Toni Rapp said...

Thanks for stopping by and reading my blog. I look forward to reading and getting caught up on your journey as well.

newbie said...

Thanks for sharing this - I have often wondered if I have a mild case, because I do have some of the symptoms. Going through infertility has taught me that I should at least ask the question. Thanks again for sharing - knowing is half the battle, as they say.

Diane said...

Glad you are part of the group posting this month. I was diagnosed over ten years ago and after several surgeries ended up having a hysterectomy. To my horror the disease has continued to grow and I still suffer pain. I hope they find a way to get you thru and that you can conceive. Developing a support network is so important. Feel free to visit my blog or message me. Www.thedianestory.wordpress.com

Good Timing said...

Just stumbled upon your blog and wanted to thank you for sharing endometriosis awareness. About a year ago I had a laparoscopy and hysteroscopy to remove stage II endo as well as a polyp. 4 months later we conceived with IUI and injectables, hcg trigger shot and progesterone -loved the supps lol! So don't give up hope because it can happen. :). Oh, I also wanted to say I had very bad mittleschmirtz ovulation pain as well!! Sounds like our endo is very similar. Loved your fave things party, what a lovely idea! :)

Annabelle said...

Thanks for posting this! It's been a while since I've seen a list of symptoms for the nasty disease that I've been cursed with since I was 12! I also experienced the horrific mittleschmirtz ovulation pains! Thanks for following me also! I may repost this if you don't mind. I think awareness is very important!

EndoJoanna said...

Thanks for the mention Jess! I am so glad to have gotten to know you and I wish you all the best on your journey to baby! Thanks for posting this about endo, it is very informative and helpful. I hope it helps others! xo

Rebecca said...

I was diagnosed with Endo when during a Saline Infusion Sonogram. My RE found an endometrioma. He had found others before but wasn't positive about them until then. The IVF I had also provided conclusive evidence when the follicles were all emptied and the endometrioma of course was bloody. I have no clue which stage I have but only that the periods are always heavy and painful. I have pain in the bladder, stomach and rectum too which seems to be related to this disease. One day I hope they find a cure.

Meghan Newsom said...

I, also have endometriosis (along with another slew of diseases) and it SUCKS. i'm so sorry you have it and have to experience the pain it brings.

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