Medicine has advanced so much, why is surgery still the only way to diagnose this disease that, according to the WHO, affects 10% of women and girls globally.
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>Endometriosis is commonly misdiagnosed and females often report being incorrectly told their symptoms are trivial or normal.[9] Females with endometriosis see an average of seven physicians before receiving a correct diagnosis, with an average delay of 6.7 years between the onset of symptoms and surgically obtained biopsies, the gold standard for diagnosing the condition. This average delay places endometriosis at the extreme end of diagnostic inefficiency.[11]
https://en.m.wikipedia.org/wiki/Endometriosis
That is absolutely ridiculous.
The tissue in question has to be inspected somehow. Since it’s inside the body, and this isnt Star Trek, the only way to get a sample is to biopsy.
Endometreal cells show low differentiation in most types of medical imaging. While ultrasound and MRI can detect bigger accumulations of specific types of endometreal cells, endometriosis can cause symptoms well before it becomes visible in medical imaging.
This is one of the reasons diagnosing endometriosis is so challenging: non-specific abdominal pain combined with clear scans and normal bloodwork leave little critearia upon which to form a diagnosis.
Part of the problem is that the nature of testing pretty much requires you to either observe what you’re looking for outright, or observing other conditions that can only come about in the presence of the thing you’re looking for. Endometrial tissue is not dense enough to be seen on an X-ray scans. Normal endometrial tissue grows many blood vessels during the menstrual cycle, but outside the uterus that typically doesn’t happen, so blood dyes used in CT scans typically don’t show it as being particukarly unusual. Some cancers can be detected by looking for signs it leaves in the blood, and diabetes can be detected by looking for signs in the urine, but endometriosis doesn’t appear to leave these kinds of signs.
An ultrasound scan can pick up many different kinds of cysts, including endometriosis, but it can’t distinguish them, so it’s not a conclusive answer either. It is, however, just about the best we currently have in terms of pre-screening before moving on to surgery.
That’s the problem. To get a diagnostic test, we need something that can detect endometriosis but not other things, or at least something that can detect it in a way that makes it look different from other things. Alternatively, we might be able to get a better pre-screening process going if we better understood the exact cause of endometriosis: that’s not exactly what you’re looking for, but it could at least help determine who is at high or low risk. But we currently don’t understand the exact causes.
Areas for possible research include trying to understand what causes endometriosis, trying to find possible biomarkers that endometriosis leaves behind, or devising some kind of scanning technology that makes endometriosis easier to distinguish. It’s not like there are no options, and we certainly shouldn’t be at the point of throwing up our hands and calling it impossible. But it *is* a legitimately hard problem.
There are smart folks working on this problem.
[Non-invasive tests to provide quicker diagnosis of endometriosis](https://ec.europa.eu/research-and-innovation/en/horizon-magazine/non-invasive-tests-provide-quicker-diagnosis-endometriosis)
[New imaging study could make diagnosing endometriosis quicker, more accurate and reduce the need for invasive surgery.](https://www.wrh.ox.ac.uk/news/new-imaging-study-could-make-diagnosing-endometriosis-quicker-more-accurate-and-reduce-the-need-for-invasive-surgery)
And many others:
[https://www.google.com/search?q=innivative+testing+for+Endometriosis&rlz=1C1ASUM_enIE861IE861&oq=innivative+testing+for+Endometriosis&aqs=chrome..69i57.20201j0j15&sourceid=chrome&ie=UTF-8](https://www.google.com/search?q=innivative+testing+for+Endometriosis&rlz=1C1ASUM_enIE861IE861&oq=innivative+testing+for+Endometriosis&aqs=chrome..69i57.20201j0j15&sourceid=chrome&ie=UTF-8)
It take a lot of work to safely develop and release a new accurate test and even longer for it to be adopted. But on teh positive side the market for such a test would be huge, so the R&D budgets will be ther to investigate new proposals.
If you have cramps outside of your actual “period”, schedule an ultrasound. Do not call a place and say you’re experiencing some pain. Tell them that you want an ultrasound. I learned from the pain of other women that there is NO point in going to a doctor with an open-ended complaint of symptoms. Make appointments for specific procedures and go from there.
Endometriosis means that you have little deposits of your uterine tissue in parts of your body that aren’t the uterus. Usually, they tend to be nearby (the ovaries, around the uterus in the pelvis, etc), but they can end up in [really weird places like the lungs](https://en.wikipedia.org/wiki/Thoracic_endometriosis).
The reason why it’s hard to definitively diagnose it is you…have to look around to find the tissue and where it is. If you don’t see any, is it because you weren’t looking in the right places or because it was too small or because there isn’t any? It’s [pretty hard to spot](https://media.springernature.com/lw685/springer-static/image/art%3A10.1186%2Fs12905-020-01016-3/MediaObjects/12905_2020_1016_Fig1_HTML.png) even if you’re actually looking around inside of the body. We unfortunately don’t have a way of highlighting the endometriosis tissue with a scan, since it doesn’t really stand out on the scans we have now unless it’s really big. There is some work on special scans and blood tests that can diagnose it, but they’re not fully fledged yet.
As for *why* it’s like this? Sexism and a male-dominated medical research world.
Endo sufferer here. I got so sick of doctors trying to put me on the pill since I was a teen. It NEVER helped. Made my period a day or so shorter, but they were still heavy and painful. Had the exploratory surgery where they cleared out some of the excess tissue in my early 20s. It helped for a few months. I saw a new dr in my early 30s and told her about my experiences and that I had no interest of going on the pill. She told me she wanted to help and would get back to me. She called me a few weeks later and suggested Mirena. It helped so much after just a few months, I felt like doing commercials for it. After I finished having kids (38- 44, just putting it out there since I was warned since 15 that I might not be able to get pregnant at all. Had ZERO issues and needed no assistance) I got another one which took less than a few cycles to completely alleviate my terrible symptoms. PLEASE, do yourself a favor if it is a good option for you and try Mirena. I’m eternally grateful to the doctor that cared enough to want to improve my life, did the research, and suggested this because it changed my life. I moved and had to get a new doctor at a large practice, some better than others. One actually told me Mirena shouldn’t help endometriosis for these few reasons. Well, I’m sorry. I’m living proof and I’ve talked to a few other people in the same boat as me. Doctors don’t know everything and others are fantastic.
The goal would be to find a biomarker that you had a normal range for women who have their endometrium in the correct place and then a range that suggested there was a lot more than there should be.
For people like me with bicornate uteruses that biomarker would give a false positive but I might have then found out about the dodgy plumbing a couple of decades earlier
My endometriosis was found on accident. My surgeon found it during my gallbladder removal. During the procedure, he was intending to repair what he thought was an umbilical hernia (not a hernia, my bellybutton just looks weird) and found endometriosis all in my abdomen. I have a suspicion it’s now growing around my spine since I get nerve pain. Thankfully I’m trans and several years into hormone therapy so menstruation doesn’t really happen anymore. I do have to get a hysterectomy eventually, regardless of my gender stuff. It’s genetic. No one in my family that was born with a uterus gets to die with it still in their body.
Sidenote: You would think with endometriosis being commonly passed through genetics, there should be a dna test at least. Of course, I know not all endometriosis is genetic, and that for those people a dna test won’t help. But for those of us where it is, a test would be nice.
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