Truth, Theory, or Tall Tale?

Vacutainer_blood_bottles

Endometriosis will one day be diagnosed through a simple blood test.

Theory

There are several past and ongoing studies which are trying to identify “markers” which may lead the medical community to diagnose Endometriosis through a blood or tissue sample.  Imagine it: a non-invasive, conclusive diagnosis.  It’s still a theory…a hope…

Dr. Agarwal and Dr. Foster of San Diego’s Center for Endometriosis Research and Treatment are currently working on a project to see if a “BDNF” blood test will help diagnose Endo.  They have high hopes for this project.

The Feinstein Institute of Medical Research has an ongoing study to collect and evaluate DNA and menstrual blood samples of women with, and without, Endometriosis.  Their hope is to identify additional markers that separate Endo Sufferers from the general population.

CA-125 has been a long-studied biomarker which may indicate the presence, or recurrence, of Endometriosis.  Unfortunately, it has been deemed widely unreliable.  It is also used to attempt to diagnose ovarian cancer.  Additional studies are ongoing.

With persistent research, perhaps one day Endo will be simply diagnosed with a blood test!

Keep up the good work, Scientific and Medical Community!

Resources:

Center for Endometriosis Research and Treatment

Central European Journal of Immunology : 2015 (Abstract) Pro-Inflammatory Cytokines for Evaluation of Inflammatory Status in Endometriosis

Hindawi Publishing Corporation : 2015 (Abstract) Update on Biomarkers for the Detection of Endometriosis

Informa Healthcare : 2014 (Abstract) Biomarker Development in Endometriosis

Informa Healthcare : 2014 (Abstract) Noninvasive Biomarkers of Endometriosis: Myth or Reality

Interview with Dr. Agarwal

Medscape

Sage Journals : 2014 (Abstract) Peripheral Blood Telomere Content is Greater in Patients with Endometriosis Than Controls

Science Direct : 2015 (Abstract) Circulating Micro-RNAs as Diagnostic Biomarkers for Endometriosis: Privation and Promise

Science Direct : 2014 (Abstract) Urine Peptide Patterns for Non-Invasive Diagnosis of Endometriosis: a Preliminary Prospective Study

The Feinstein Institute of Medical Research

Wiley Online Library : 2015 (Abstract) Serum Biomarker for Diagnosis of Endometriosis

Share Your Story : Angela

Angela

Angela was 29 when she found out she had Endometriosis.  Now 32, she continues to have pain and problems, despite several excision surgeries.  She lives in Darwen in the United Kingdom and she and her fiancé are the proud and happy parents of their fur-baby, Alfie. They continue to push on and live, despite these difficulties.

Angela’s Journey: I’ve always struggled with painful and heavy periods since the age of about 14. I was used to going months without one and then the floodgates would open and the Hell would start again. When I was 18 I was diagnosed with Polycystic Ovarian Syndrome. To be fair I was quite lucky with my symptoms. Yes I put on weight but thankfully I didn’t develop excess hair. It was manageable. I was prepared for potential fertility issues but I wasn’t overly concerned. And then it all went wrong. So so wrong.

Around November 2010 and my 27th birthday I started experiencing severe discomfort and pain in my pelvic area (or my noo noo as I call it – you will see I’m a little bit ‘special’ as this blog progresses!). Sex started to become painful and then there was the bleeding. Without wanting to be gross or too graphic for those of you with a sensitive tummy, I bled heavily for about 3 months. There was no let up. I will admit that I was terrified, especially after making the mistake of Googling the symptoms. After losing my mum to breast and ovarian cancer the year before I really should have avoided the internet at all costs. I trotted off to the doctors convinced that I had cancer and was most probably dying. The GP referred me to the gynaecologist at the local butchers, I mean hospital, who in turn referred me to a specialist at a neighbouring hospital. This specialist turned out to be a fertility specialist – not really what I needed but he said I needed a laparoscopy, which he duly carried out.

For a ‘minor’ operation, it knocked me off my feet and the recovery hurt like Hell. When I went for my follow up appointment he told me I had IBS and should lose some weight. Now I will admit that I had started to pile the weight on. My tummy was permanently bloated. I wasn’t fully convinced but was happy to have an answer, even if I doubted the answer given. I took the medication prescribed and then more problems started. Prior to taking these pills, I’d not had that many toilet troubles, but I soon did. As soon as I threw the pills away, these troubles stopped but the pain persisted and increased. This started many, many appointments with what I can only describe as a bitch of a GP who kept saying it was just IBS and I was over-reacting.

Eventually I was sent for an internal ultrasound scan. There I was told I had enlarged ovaries and the PCOS was active but there were no tumours and no endometriosis. By this point I was really starting to wonder what on earth was wrong with me. I began to worry that people would think I was imagining it or putting it on. In time I was referred to a gynaecologist at a local private hospital (although as an NHS patient). The man I was going to see had come highly recommended so my fiancé and I were feeling hopeful, especially after the first meeting with him. He seemed very understanding and sympathetic and said I needed another laparoscopy. So again I was put to sleep and prodded about with, and again the recovery was not fun. Thankfully my lovely man looked after me and spoilt me rotten.

The follow up came and the surgeon told me that he wasn’t surprised I was in so much pain as I had endometriosis. He showed me some scary pictures of my insides and then we discussed what my options were. By this time I’d had enough of the pain and it was agreed that a hysterectomy was an option, but first I had to take a 6 month course of Zoladex injections which would shut my ovaries down to see if this helped the pain. To cut a long story short, the injections did not help at all, just put me into a false menopause. So a full hysterectomy was booked and on January 31st 2013 I went into theatre and was removed of all my dreams of ever having children, removed of a large part of my feelings of femininity and removed of my sanity, internal thermostat and my control of my emotions.

In March I went to see the surgeon again and explained that the pain had not stopped. He did not seem surprised by this and said he suggested that I may have endo on my bowel and possibly IBS as well so he referred me to a colleague of his. This colleague was a brusque Yorkshireman who seemed to have no interest in what I had to say. He just booked me in for a colonoscopy (even now the words ‘bowel prep’ fill me with dread and make me hope that I am in close proximity to the toilet) and that was that. The colonoscopy showed nothing at all and so it was back to square one. I was then referred to a new surgeon – supposedly the best in the field of endometriosis in the area where I live. In March 2014 he carried out yet another laparoscopy which confirmed that the endometriosis was still there and that there was remaining ovarian tissue left behind after the hysterectomy. Then it was a 3 month course of Zoladex again which helped a little bit and showed the surgeon that the endo was still active.

Yesterday I saw the surgeon again and I will be having another laparoscopy to remove the ovarian tissue and any endo that he finds. It is looking like this could be the last surgery as each procedure is getting riskier and to be honest, they don’t seem to be working. Due to the nerve damage that the endo has caused, I will also be referred to a pain management specialist. Everyone always asks if Mick and I will adopt in the future and the honest answer is probably not. I always wanted children, but after going through all of this, I just want my life back. We want to travel and get back all the years that this disease has taken from us. We have accepted that children are not likely to be part of our future, but I will never rule it out 100% – plus a naughty little pup called Alfie keeps us on our toes at the moment.

Words of Advice for Us:  Listen to your body. You know when something is right so stick to your guns. The number of doctors who tried to make me think that I was imagining it was ridiculous. I had to fight to even get diagnosed and treated. Persistence pays off so don’t take NO for an answer.

If you wish to contact Angela, you can reach her the following ways:

Send her an email: collinsona@yahoo.com

Follow her blog: angelatheendoprincess.wordpress.com/

I want to send a special Thank You out to Angela for being brave enough to share her personal story, struggle, and victories with us today.  You are a beautiful, brave, and strong woman.  Thank you!!!   Angela, always enjoy the company of your fiancé and fur-baby. Live! And may your upcoming pain management treatments offer you some peace.  Please keep us posted.

 

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And if YOU would like to share your story, you can do so by clicking here.  The best part about this disease is the strong network of love and support from our fellow EndoSisters, and our friends and family, too.

Yours, Lisa.

Bookmarks, Business Cards, and Buttons!

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I figured since I’d be mailing out books from my Bloomin’ Uterus library (click here to see what’s available!), I would need bookmarks to send out, too!

So I went to Vista Print and had some business cards made up! I’m uber excited, but they’ll take a few weeks to get here…

I’m also hoping that my gyno will allow me to leave a small stack with the nurse of the office, that way when women with Endometriosis come into the office, they can maybe slip them a card.  I know I was left flabbergasted and bewildered when I left after my diagnosis appointment.  Maybe it would bring a little bit of peace to any new EndoSisters.

That’s not even the best part!!

I used Goodshop to log into Vista Print, and they’ll donate 4% of my purchase price to the Endometriosis Foundation of America! *woot* It’s like a double win!! So now I’m even MORE excited!

I also plan to pass these cards out to anyone who asks why we’re walking around Lake Miramar on March 28, 2015, all dressed up in yellow, wearing Bloomin’ Uterus buttons 🙂 Live in the San Diego area and want to join us?  Click here.  Want your own Bloomin’ Uterus button? ALL proceeds go to the Endometriosis Foundation of America. A $2 donation can be made here.

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Reader’s Choice : Stats & Percentages

In all of the many books and webpages I’ve read since my Endometriosis diagnosis, I’ve read the same stats over and over.  1 in 10 women will develop Endometriosis.  176 million women affected worldwide.  But where did those stats come from? When were they last updated? How do they track it?

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After scouring the web, I finally found some of the sources of those figures, but nothing that actually gives me a current number of diagnoses around the world today:

10-15

In September, 2014, C Mehedintu, MN Plotogea, S Ionescu, and M Antonovici published “Endometriosis Still a Challenge.J Med Life. Sep 15, 2014; 7(3): 349–357.  The article states that 10% – 15% of women of reproductive age suffer from Endometriosis.

2-10

The Florida Hospital does not cite their source, but states that 5.5 million women in North America have Endometriosis, and that it effects 2% – 10% of women in their reproductive age. Pit those figures against those presented by the Endometriosis Foundation of America, which state 8.5 million women in North America have Endometriosis.  See how frustrating it can be to pin down a figure?

1in10

Endometriosis UK credits their statistics of 1 in 10 women have Endo to an April, 2009 article by Rogers PA, D’Hooghe TM, Fazleabas A, et al. Priorities for endometriosis research: recommendations from an international consensus workshop. Reprod Sci 2009;16(4):335-46.

July, 2007: Rogers’ article references an article which states the costs of treating Endometriosis in 2002 in the U.S. along was approximately $22 Billion, citing between $1,023 – $2,801 annually for each patient.  This figure took into account “productivity loss.” To quote the author, “There is a need for more and better-designed studies that carry out longitudinal analyses of patients until the cessation of their symptoms or that model the chronic nature of endometriosis.” Simoens S, Hummelshoj L, D’Hooghe T; Endometriosis: cost estimates and methodological perspective. Hum Reprod Update. 2007 Jul-Aug; 13(4):395-404.

5-10

October, 1999:  An article cites that Endometriosis effects between 5% – 10% of women. Caroline Wellbery, M.D.; Diagnosis and Treatment of Endometriosis; Georgetown University School of Medicine, Washington, D.C.; Am Fam Physician. 1999 Oct 15;60(6):1753-1762.

1in10

June, 1997: Rogers’ article references an article which states that 1 in 10 women will develop Endometriosis. Eskenazi B, Warner ML; Epidemiology of Endometriosis. Obstet Gynecol Clin North Am. 1997 Jun;24(2):235-58.

Since most of these figures in the past 20 years have all been relatively similar, all of this research led my curiosities to “When was Endo first discovered?”

Ivo Brosens (Professor Emeritus of the Catholic University Leuven, Belgium) and Giuseppe Benagiano (of the Sapienza University of Rome’s Department of Gynecology-Obstetrics & Urology) wrote an article in 2011 entitled, “Endometriosis, a Modern Syndrome.”  They state that Thomas Cullen was the first to accurately describe and classify Endometriosis.  Further research shows Mr. Cullen’s discovery was back in 1908, just a little over 100 years ago! We’ll get there…

comparison

In 1880, Malaria parasites were discovered in a patient’s bloodstream.  During the building of the Panama Canal and the occupation of Cuba, the U.S. upped it’s efforts to control the disease and successfully “eliminated” it from the U.S. by the efforts of the Center for Disease Control in 1951. It took 70 years from discovery to cure.

In 1912, Measles had become a problem in the States and had to be reported by all physicians. In the first decade after, 6,000 deaths were reported.  A vaccine was created in 1962 and made available; however, Measles wasn’t considered “eliminated” from the U.S. until the year 2000.  That’s 88 years.

Conclusion

So, in conclusion, what have I found today?  That different sources all have different estimates of how many women have Endometriosis today.  It has varied between 2% – 15% of women either have, or will develop, Endometriosis.   To quote the National Institute of Health, “Because some women might have Endometriosis, but do not have symptoms, it is difficult to know exactly how many women have the condition.”  The world may never know just how many women carry this disease inside of our bodies.

The one thing I am certain of since today’s assignment: too many women have Endometriosis.  Better treatment, and  a cure, must be developed.  And I know steps are being taken by various agencies around the globe to do just that.

 

Resources:

American Family Physician

Center for Disease Control

Endometriosis Foundation of America

Endometriosis UK

Florida Hospital

US National Library of Medicine

World Endometriosis Society

 

*Sunday is “Reader’s Choice” where my readers, friends, and family get to suggest a topic.  Today’s topic came from a fellow WordPress blogger, Elizabeth, “How about some percentages and recent stats on Endometriosis?”  So research began!  Again, I am a layman.  I do not hold any college degrees, nor mastery of knowledge.  Please take what I say with a grain of salt.  If curious, do your own research 😉 Validate my writings.  Or challenge them.  And ALWAYS feel free to consult with your physician. Always.  Yours ~ Lisa