A Call to Action for Increased Funding for Endometriosis

An estimated 176 million women and girls throughout the world are affected by endometriosis, according to the World Endometriosis Society. I’m pleased to announce that ACOG, ASRM, and other organizations are co-sponsoring the worldwide Million Woman March for Endometriosis to raise awareness and advocate for increased funding for this common and often painful gynecologic condition. We believe that an internationally-coordinated campaign is absolutely necessary to effect change. So on March 13, we’ll be marching on the National Mall in Washington, DC, while similar events take place throughout the world.

Endometriosis affects 6–10% of all reproductive-age women. It’s a leading cause of chronic pelvic pain and a common cause of infertility. Unfortunately, we still don’t know what causes it. And the treatments that we have, while helpful, are not curative. According to the Endometriosis Foundation of America and the World Endometriosis Research Foundation, the health care costs of endometriosis are estimated to be $70–95 billion each year in the US alone. Although this is comparable to other chronic diseases, two-thirds of these costs are due to loss of productivity at work.

Our campaign goals include:

  • Empowering women and teens by encouraging them to unite with their supporters to take a stand against endometriosis.
  • Raising awareness about endometriosis and its effects on women and girls.
  • Educating and training the medical community to promote early detection and improved treatment.
  • Finding a cure for endometriosis and developing non-invasive diagnostic tests.
  • Working with Congress to allocate funding for endometriosis.

We won’t be marching alone in March. Awareness campaigns also will be occurring in dozens of capitals around the world—Amsterdam, Belfast, Berlin, Brasilia, Buenos Aires, Copenhagen, Dublin, Helsinki, Kingston, Lisbon, London, Madrid, Oslo, Reykjavik, Rome, and Stockholm, to name just a few.

Throughout my presidential term, I have advocated for well-woman health care and prevention. Wouldn’t it be wonderful to one day have endometriosis on the list of “preventable” conditions? That will only happen when our research discovers the cause.

Please plan to join us in Washington, DC, on March 13. For more information about supporting the Million Woman March for Endometriosis, go to www.millionwomanmarch2014.org.

Resource: Endometriosis Fact Sheet (PDF)

11 thoughts on “A Call to Action for Increased Funding for Endometriosis

  1. I’m a little troubled that some comments here– critical, but respectful and not inflammatory–have been removed. Why were they removed?

  2. More research is great and necessary. What can’t wait is more education and training for additional excision surgeons. Women whose lives are being destroyed by this invasive and miserable disease can’t wait for better access to treatment options that work.

  3. I applaud this campaign and more research is certainly a worthy cause, but there IS effective treatment for endometriosis: excision surgery by an experienced specialist. However, far too many ob/gyns continue to accept outdated notions of the disease and approach it only by way of (often ineffective) management of symptoms. This campaign should be calling, first and foremost, for a revolution in the education and training of doctors about endometriosis as well as the promotion of more surgical specialists with the expertise to remove disease– as some surgeons have been doing effectively for more than two decades.

  4. Prayers for all the women with endometriosis, adenomyosis, pelvic floor disorders, and women without answers. Especially all the women and girls who may be living in pain without a diagnosis. You were her. Lets not forget her. Those are our angels.

  5. It took 3 years and at least 12 different doctors to determine that I have endometriosis. Every time I would go to the doctor and complain of pelvic pain they would write it off as a UTI, give me a script of antibiotics and send me on my way. This was a monthly ordeal at first. Then monthly turned to weekly. I would make an appointment, go into the doctors, tell me it was a UTI and write me a script of antibiotics and now pain killers because the pain had worsened. Finally I went to the OB once again complaining of pelvic pain and when my test for a UTI came back negative a doctor asked me what my periods were like. I explained extremely painful, I am bed ridden for at least 2 weeks, I bleed through a heavy duty maxi pad in an hour, and with the pain I was beginning to vomit as well. The Ob told me to get undressed from the waist down. All she did was an internal pelvic exam and she looked up at me confused and baffled and said “I can feel the fibroids. We need to get you in to have a laproscopy done right away”. The day of my laproscopy my parents and husband were all waiting in the waiting room. Anxious to hear what they found. My husband said my OB walked into the waiting after my surgery and looked exhausted and in disarray . She sat down and spoke to my family and said “I am so sorry. Its horrible. It’s worse than we thought. And she will most likely never be able to bear children ever again.” My husband I have a child already that I had years before this but we wanted one more. My husband came into my recovery room with a heavy heart and broke the news to me. I felt like I had just been punched in the stomach. After my 6 week post op of my laproscopy my OB had told me that my case was beyond her experience and I need to seek another OB out. At this point I was in so much pain that I wasn’t able to leave my bed or heating pad. I relied on pain meds just to slightly take the edge off. I went to 4 different OB’s and all they did was prescribe me birth control and more pain meds. I was only 27 at this point. I ended up breaking down and sick of not being able to live my life any longer and have the pain dictate it. I found an OB and I walked into her office she could tell I was exhausted and in agony and I explained to her every thing I had been going through in the past 2 years and I wanted my life back. I wanted to be a mom again, a wife again, and not just some lifeless human being that lived in my bedroom. I ended up asking her for a hysterectomy. I was 28 at this point. I had a full hysterectomy. She took both of my ovaries, cervix, and uterus. She had to peel my uterus off my bowels because they had become adheased to them. I am now 6 months post op from my Hysterectomy but unfortunately I now am being treated for Interstitial cystitis which seems to go hand and hand with endo. I’d like to say that I am fully happy with my decision on getting a hysterectomy but apart of me still mourns for that second child I will not have. And apart of me gets silently upset and envious to see all my friends having their 2nd and 3rd baby. Yes I am very fortunate to at least have a child but I wouldn’t wish this disease on my worse enemy. I hope that we can bring more awareness to the world because I know their is a lot of similar cases like mine. Women who at the child bearing age have to have a hysterectomy because this disease has ruined their reproductive system and some of their major organs. I think we should all be done with sitting in silence. And that’s my story.

  6. This disease has consumed & robbed my adult life of so much. I had signs since I was a little girl with bowel issues, teenage years mask with BCPs. I’ve been married for almost 8 years, after a year getting off BCPs and the dominos fell. Incredible pain during menstruation, ovulation & intercourse. I went through OB after OB saying its normal, my RE said IVF was the best chance and doing a laparoscopy didn’t outweigh the risk, the cycle should’ve been cancelled twice, but nonetheless $20k+ later unsuccessful… All the while I just knew endometriosis was the cause. New OB (by accident) did a pelvic, 5 years in to this, and said ‘has anyone told you, you have endo?’ From there did 1st lap,and found stage 1. I knew it had to be worse. Just had robotic laproscopy done from highly regarded excision specialist, I had it everywhere, ovaries were adhered to uterine wall & bowel, adenomyosis too. I’ve had terrible ovulation pain on my right side (ovary adhered to uterine wall) every month and terrible bowel issues during menstration & ovulation. How did my RE not pick up on any of this in ultrasounds, my left ovary was ALWAYS hard to find. How did my first lap not show my ovaries were adhered, on my bowels, appendix, all surfaces in my pelvic floor! The robotic surgery cost $7k+ but I know this specialist was worth. I feel so let down by so many of my OBGYNs telling me the pain was normal…debilitating pain is not normal. I’m a very healthy, normal weight, a personal trainer & masters degree in physiology…I knew my body wasn’t doing what it was supposed too. I feel let down, used financially and EXHAUSTED. The emotional toll of this disease goes far beyond me & my husband, it affects our families. Insurance does not have our best interest in mind!!

  7. Not just reproductive aged women, seeing it in young teens and menopausal women. Endo remains active after menopause and is very painful, denying women their careers, their sexuality, their activity, often interfering with their bowel and bladder function and can cause severe low back pain and sciatica. I manage a 10,000 member Facebook page of patients who have failed all Gynecology generally has to offer. Yet when I can find them care with a skilled endo surgeon their lives are restored. It is not just research you need, research has been going on forever with NO improvement in care except among those who h ave developed advanced surgical skill. You need training centers and speciality centers

  8. EndoConneCT, a support group for women living in Connecticut with endometriosis, greatly appreciates this letter of support. We will be representing Connecticut in Washington, D.C. in March and have launched a campaign to reach out to all ob-gyn’s in our state.

  9. I do wish they would include adenomyosis in this. My daughter lost her uterus to adenomyosis at age 27, unable to handle the chronic pelvic pain. Since it is so similar to Endometriosis (all inside the uterus as opposed to outside) why not include it in education and campaigning? Thank you.

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