Endometriosis diagnosis 'takes up to 10 years'
Source: Journal of Clinical Nursing 2005; 14: 1127-34
Through in-depth interviews, researchers explore women's perceptions of living with endometriosis and the strategies used to manage their disease.
Researchers have called for a greater awareness of endometriosis after finding that women affected by the condition often wait 10 years to receive the correct diagnosis.
The study findings are based on in-depth interviews with 18 women from New Zealand, aged 16 to 45 years, about their experiences with endometriosis.
The volunteers, who were recruited from a local endometriosis support group, typically took 5-10 years to be diagnosed, as doctors often initially told patients that their symptoms were due to conditions such as irritable bowel syndrome.
The dominant theme uncovered by the interviews was that the severe and chronic pain experienced by the women had taken a significant toll on their quality of life. "As well as causing them severe pain, endometriosis also had a negative impact on other areas of their life, such as their ability to work, family relationships, and self-esteem," explains Professor Annette Huntington, from the University of Wellington in New Zealand, who led the research.
In addition, the absence of a formal pain management follow-up after treatment meant women had to find other sources of information, with many making changes to their lifestyle, including increasing activity levels and improving nutrition.
"Pain management services specifically for women with endometriosis would provide much needed support with this neglected aspect of the disease," the researchers conclude.
That is very interesting. I had doctors wanting to diagnose me with endometriosis everytime I turned around - but no one wanted to diagnose me with PCOS. Turns out, after my laporoscopy, I don't have endometriosis. But I most certainly do have PCOS. So I wonder how many women are walking around thinking they have endo, despite not having had a laporoscopy to rule it in or out?
__________________ Christy (30) married to Earl (42) since 1/17/97
DD Alyssa To view links or images in signatures your post count must be 0 or greater. You currently have 0 posts. born 11/2001
It took me 12 years to get a GYN to finally do a lap and diagnose/remove my endo. My symptoms started 3 years before I even saw a GYN, so that's 15 years of needless suffering thanks to a tiny amount of endometrial tissue deposited behind my uterus. Almost half of my life right there.
I was actually glad I had PCOS whenever I was not on BCP, as I wouldn't have AF pretty much at all. It was blessed relief really!
I hope that the medical community wisens up and other girls and women don't have to needlessly suffer so.
__________________ Me (33)/Michael (3o) Together for almost nine long, happy years!
First PCOS dx: 1989 Supplements: One A Day Weight Smart, B Complex, Biotin, Pantothenic Acid (B5), B12, Saw Palmetto, Vit C, Vit D3, NAC, Alpha Lipoic Acid, Chromium Piconolate, Cinnamon, Magnesium, EPO, Zinc Gluconate, Green Tea Diet: "Modified" Zone plan
"You don't love a woman because she is beautiful, but she is beautiful because you love her" -Anon.
To view links or images in signatures your post count must be 0 or greater. You currently have 0 posts.
My symptoms started 3 years before I even saw a GYN, so that's 15 years of needless suffering thanks to a tiny amount of endometrial tissue deposited behind my uterus. Almost half of my life right there.
That's what I'ma talkinn about!!!!
My heart goes out to you. Accenutating the word tiny - even the tiniest amount can cause so much pain.
From what I've understood about endometriosis . . . it is one of the most difficult disordesr to diagnose. It is based on subjective opinions by us more than what they find. Even when I told my OB/Gyns my symptoms of painful periods, they never addressed their concern of endometriosis. And, even my mother at the time (unfortunately) never brought up painful periods as an issue, because I've been told that is what you go through. I thought it was the norm, which I knew later shouldn't be ignored. So all in all, it is up to us to voice our symptoms and have them addressed.
On the issue of the tissue in endometriosis. . . it doesn't matter how big or how tiny the tissue is becuase it doesn't correlate with the type of pain you have. There could be a large endometrial implant found and not cause any pain whatsoever. And, you can have no tissue found at all and have lots of pain. Although they tend to me be a blueberry color, they can be different colors. Some disappear and some reappear. It is still such a mystery how it happens!
It sure can be nice once an easier cure will be found besides treatments of NSAIDS, lupron, bcps, and a lap.
__________________
To view links or images in signatures your post count must be 0 or greater. You currently have 0 posts. Dear God: Thank you for making me so wonderfully complex! It is amazing to think about. (Psalm 139:14) To view links or images in signatures your post count must be 0 or greater. You currently have 0 posts.
To view links or images in signatures your post count must be 0 or greater. You currently have 0 posts. Daily Regimen
Multi-Vitamin & Mineral with iron (Natrol) - the best one I've found!
Done with Lupron...The cycle is on! Metformin 1500mg
Endometriosis diagnosis 'takes up to 10 years' 
