There are many usual signs and symptoms of Endometriosis. If you suffer from this disease, you know them all too well. One of our readers, Tanya, let us know that she suffers from “Silent Endometriosis.” What’s that? She has an official Endometriosis diagnosis, but only some of the symptoms associated with Endometriosis. Some people with Silent Endo don’t have any Endo symptoms (this is known as asymptomatic Endometriosis). Does that make her any less of an Endo sufferer? No, not at all. She suffers from the same invasive disease as the rest of us. Just in a different way.
A whole slew of questions were raised, which we’ll look into:
- Why do some people present with classic symptoms like crippling pain and some don’t?
- And, given that silent endometriosis exists, this makes me wonder if the overall incidents of endometriosis is higher than is usually quoted. How many have this disease and have no idea?
- Since the symptoms don’t present as normal in silent endometriosis, what are some of the other signs that people possibly facing this condition can look out for?
- Why do some patients who are riddled with endometriosis have no pain, and others with very little endometriosis have excruciating pain?
Let the research begin!
Symptoms of Silent Endometriosis
Dr. Jeffrey Braverman wrote in October 2013 about his surprise at how many people facing problems with fertility go undiagnosed with Endometriosis, simply because they do not have pelvic or period pain. A red flag for Silent Endo may be a prior history of miscarriages or failed IVF attempts. He says many patients with Silent Endometriosis suffer from unexplained elevated FSH (follicle stimulating hormone) levels, low AMH (anti-mullerian hormone) levels, unexpected low egg numbers, poor egg quality, or recurrent miscarriages. These symptoms alone may be an indicator of Silent Endometriosis. His office also finds many people with Silent Endo suffer from immune-related issues, such as pelvic inflammation and elevated NK activity (NK cells are immune cells known as Natural Killer cells, and when elevated may show a heightened autoimmune response). Dr. Tamer Seckin, one of the leading Endometriosis experts in the country, later blogged about Dr. Braverman’s efforts to shed light on infertility and Silent Endometriosis.
Dr. Braverman again addressed these topics in 2014 with the Endometriosis Foundation of America. He stresses again that most patients that they see end up having Silent Endometriosis, but the first signs of the diagnosis are infertility, recurrent miscarriages, or pregnancy complications; NOT pain. And that many are able to conceive after having their Endometriosis surgically removed.
On the flip side, a study published in 1987 in the British Medical Journal found no direct link between Endometriosis and infertility. Women with Endometriosis were treated prior to attempts to conceive; however, they “did not return to normal fertility, though all other causes of infertility were excluded.” They, therefore, questioned the disease’s role or contributions to infertility.
A study published in 2015 in the Journal of Psychosomatic Obstetrics & Gynecology found that peoplpe who suffer Endometriosis pain, as opposed to those without painful symptoms, have a poorer quality of life and mental state of being. Is it saying that asymptomatic Endo sufferers don’t suffer? No. It simply points out that pelvic pain can make a drastic difference, as well as recommends the possibility of psychological intervention for those in pain. I’m sure anyone living with Silent Endometriosis must feel some sort of anxiety or grief at this invasive disease in their body, even if they may not feel physical pain.
As if this wasn’t enough to process, there is a case published in 2015 of a woman who had a lump in her belly button. Sound familiar? We have previously written about belly button Endometriosis where the bump bled, caused pain, grew, etc., especially during periods. Well, this gal had no symptoms of Endometriosis but had developed a bump inside her belly button which she carried around for 18 months before having it surgically removed. Her little bump never bled or changed during her periods. She had no prior diagnosis of Endometriosis. Her doctors thought it was a keloid scar or maybe a fibroid in her skin. So they cut it out and sent it off for biopsy: and it came back as umbilical Endometriosis. She was referred to a gynecologist for treatment. And the study doesn’t follow-up with her progress…
The medical community does not know why some patients suffer from Endometriosis pain, while others may not know they have it. It’s been suggested that those with Silent Endometriosis simply have a higher pain tolerance than others. Although I know you Warriors are strong and badass, I don’t know if I buy this theory.
Tanya’s Story & Symptoms of Silent Endometriosis
I asked Tanya if she could share with us her symptoms and diagnosis of Silent Endometriosis. Graciously, she agreed:
“1. I have had right side pain in the area of my ovary since my early 20s (I’m 38 now). I’d been to several doctors and they did ultrasounds, etc. and ultimately said it was nothing. The pain was not based on my cycle like most Endo pain is — it was pretty much always there. After I got the lap, I found out I had Endo on my right ovary, so that’s what that pain was all along.
“2. I frequently got what I thought were UTIs, but when I would get tested they always told me it wasn’t a UTI. I also had to pee all the time, and I had trouble fully emptying my bladder. The biggest concentration of my Endo was on my bladder.
“3. I had bright red spotting up to a week before my period. My fertility doctors always passed it off as low progesterone (without actually testing my progesterone). But really it turned out that I had Endo on my cervix and that’s what was causing my bleeding.
“4. Infertility. Also, poor egg quality and low ovarian reserve, despite my AMH and FSH (tests for ovarian reserve and egg quality) being normal.
“But I had none of the classic symptoms. I am lucky I found out. My half-sister also had Silent Endometriosis and went through IVF and infertility, so it was in the back of my mind for a while. However, I asked two different fertility specialists and my OB if they thought I might have Endo, and they all said absolutely not. I think because I didn’t have the classic symptoms. I finally went to a reproductive immunologist who specializes in Silent Endo and within 5 minutes of speaking to me for the first time, he diagnosed me with probable Endo. I got the lap with his surgeon a couple of weeks later and they found Stage 3 Endo.
“So that is my story. I hope this helps. I really appreciate you researching this. Like I said, I was lucky I found out. I really had to fight to get a diagnosis. It makes me sad that many infertile women are likely suffering from this and have no idea.”
Diagnosing Silent Endometriosis
It may very well be that the only signs and symptoms of Silent Endometriosis are likely fertility issues and an official diagnosis is obtained by chance. Most patients learn of their Silent Endo while undergoing some sort of unrelated abdominal surgery.
If you would like to, you can watch a video of what Endometriosis implants look inside of a patient diagnosed with Silent Endometriosis. Warning: you’ll be looking at a person’s insides! But, it looks just like normal Endometriosis implants. That’s because, in fact, it IS. The symptoms are different; that’s all. Just look at Tanya: she had some symptoms, and she wasn’t diagnosed for quite some time. Her implants, although not causing her extreme pain, did disrupt her body enough to create noticeable issues for her. And, remember, some people have no symptoms. I’m sure many go their entire lives never suspecting…
In 2002, a study followed-up with women who were previously diagnosed with Silent Endometriosis. Between 1986 and 1989, 39 women had surgeries to have their tubes tied (aka a tubal ligation). During those surgeries, Endometriosis implants were observed, removed, biopsied, and they were officially diagnosed with the disease. They’d never had any prior complaints usually associated with this disease. Most were diagnosed with “minimal Endometriosis,” which may be considered Stage I or Stage II Endo. In 2001, the authors followed-up with these women to see how they had been feeling over the years. Only 6% had reported any type of pelvic pain since their diagnosis. The study concludes that there is very little risk that women with asymptomatic Endometriosis will ever develop or have worsening symptoms.
How Many PEOPLE Suffer from Silent Endometriosis?
A study published in 1991 evaluated 86 women, all of whom said they did not have any symptoms of Endometriosis. All 86 underwent laparoscopic surgeries, and low and behold almost half of them did, in fact, have Endometriosis! A whopping 45.3% of the women had “definitive evidence” of Endometriosis.
A 2010 study suggests that 20-25% of women with Endometriosis are asymptomatic (meaning they don’t have any symptoms). Assuming these estimates are accurate, and that 176 million women worldwide have Endometriosis…25% would mean that 44 million women have mild to no Endo symptoms! Think you’re alone in your Silent Endometriosis? Think again! Millions of others are right there with you.
But this begs the question: how many people have it and don’t know it? To quote the Mr. Owl of the old Tootsie Pop commercials, “The world may never know.” We can only continue to educate each other, the masses, and the medical community of the potential signs of Silent Endometriosis.
Stages of Endometriosis and Levels of Pain
Going back to that 1991 study which examined 86 women for Endometriosis, 32.5% were diagnosed with Stage I, 9.3% had Stage II, 1.1% had Stage III, and 2.3% suffered from Stage IV Endometriosis. And none of these women had suffered from any pain or other typical symptoms of Endometriosis.
It has often been said that the Stage of Endometriosis does not dictate the pain level, only the level of infiltration of the disease. Someone diagnosed with Stage I Endometriosis (the least invasive Stage), may have the WORST pain; and someone with Stage IV (the most invasive Stage), may have minimal pain.
But why? It’s a conundrum. Nobody knows. Perhaps one day they will better understand not only the cause of our disease and the course it takes, but also the differences in pain levels, Stage levels, and ultimately…a cure.
Treating Silent Endometriosis
Since most Warriors suffering from Silent Endometriosis don’t suffer any pain, the treatments I’ve run across only discuss surgically removing the implants. Some studies actually mentioned not treating it, even surgically, since there are no symptoms to be treated. Sometimes the risks outweigh the benefits (anesthesia, adhesions, recovery, etc.).
However, alterations to diet and lifestyle may help keep the growths of Endo at bay whether you have Silent or regular Endometriosis – anything we can do to help our bodies fight the growth and recurrence of the implants should be done. Right? Right.
My Last Two Cents
I feel like I’ve raised more questions than answers, but am once again very grateful to our readers for bringing this topic to light. I had no idea that Silent Endometriosis was a thing! Not only am I flabbergasted by the sheer volume of people who may have it and not know it, but am heartbroken with the lack of attention and information available on this subject. I hope this little blog entry brings peace and answers to some…
(Updated March 27, 2019)
Resources:
Braverman IVF & Reproductive Immunology – (Blog, Oct 2013) Silent Endometriosis a Significant Cause of “Unexplained” Embryo/Egg Quality Issues in Young Women
Dr. Seckin Endometriosis Care and Surgery – (Blog, April 2014) Endometriosis and Infertility
Endometriosis Foundation of America – (Video, 2014) Jeffrey Braverman, M.D.; Outsmarting Endometriosis
Fertility & Sterility – (Abstract, Oct. 2002) A Long-Term Follow-Up Study of Women with Asymptomatic Endometriosis Diagnosed Incidentally at Sterilization
Human Fertilisation & Embryology Authority – description of NK cells
Journal of Surgical Case Reports – (Article, March 2015) An Unusual Case of Asymptomatic Spontaneous Umbilical Endometriosis Treated with Skin-Sparing Excision
Journal of Psychosomatic Obstetrics & Gynecology – (Abstract, Aug. 2015) Impact of Endometriosis on Quality of Life and Mental Health : Pelvic Pain Makes the Difference
Journal of Assisted Reproduction and Genetics – (Article, Aug. 2010) Endometriosis and Infertility
The Journal of Reproductive Medicine – (Abstract, July 1991) Prevalence of Endometriosis in Asymptomatic Women
British Medical Journal – (Article, May 1987) Successful Treatment of Asymptomatic Endometriosis : Does it Benefit Infertile Women
~ 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
Bloomin' Uterus 
Thanks again for researching this!
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You are so, so, so welcome!
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Nice, thank for sharing
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I had a lipersocopic tubal ligation after having 2 children. I’ve never had bad periods or problems conceiving. after my procedure the doctor told me I have stage 4 endometriosis. hoping I stay symptom free. Thank you for your extensive research on the topic.
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Thank YOU for sharing with us!! I hope you stay symptom free, as well. ❤
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Thank you so much for your research! I’m 51 years old, have given birth w/o any difficulties to 3 children and I’ve never had the horrific pain described with Endo. For the past few years, I’ve had irregular and heavy periods at times and thought it was related to perimenopause. I had an ablation done about 3 years ago and it helped for about 4 months and then my problems resumed. I changed OB/GYN’s and at the end of October underwent a Laparoscopy exam of the uterus and abdominal cavity. She found diffuse Endo throughout the abdominal cavity, on my bladder, the ligaments to the uterus etc., but none on the inside of the uterus.
The treatment recommendation is 6 months of Lupron to put me into a chemically induced menopause followed by a hysterectomy. I’m really torn about doing this. I have NO PAIN, so why do I need to go through all of this? I’ve been unable to get a straight answer despite my research and I’m very frustrated.
My husband found your blog and I’m grateful for the information.
Thank you!
Karen
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Hi Karen!
If you have no pain from your Endometriosis and if the disease isn’t causing you distress or health issues, I’d recommend NOT taking Lupron. Which is huge for me. I usually don’t full out tell someone they shouldn’t do something. But here’s my reasoning:
Lupron is a band-aid drug meant to suppress symptoms of Endometriosis. It doesn’t make it go away. It doesn’t keep it from coming back. And the side effects are horrendous for may people, myself included. If you’d like, I can send you the link to my experience or another one of my blog entries where other people document their experiences in the comments section. I’ll need you to make an informed decision.
And if you DO decide to go on Lupron, please ask for the 1-month injection instead of the 3-month injection – that way if you decide to quit, the medication will be out of your system faster. And see if you can take the Add Back pill as it may help with some side effects, although it didn’t help with mine. If your doctor recommends Orilissa instead, please be aware that it’s made by the same maker of Lupron and does nearly the exact same thing…with similar side effects.
And, she did Ablation surgery, which is the burning away of the disease. It may cause scar tissue and she may have (unbenknownst to her) missed removing some illness. If you ever do need to go in for a second surgery, please try to find a doctor in your plan that will do wide-margin excision surgery; where they remove the lesions and some remaining healthy surrounding tissue to try to get all of the illness. But that’s only if you ever need a second.
Also be aware that a hysterectomy is NOT a cure for Endometriosis. Endometriosis doesn’t grow inside the uterus. And the disease is NOT the lining of the uterus finding it’s way outside into your pelvic cavity; it’s similar to the uterine lining, but not the same. You’re 51 – you’ll likely soon be going through The Change soon enough 😉 Understand that some women with Endometriosis continue to suffer with pain and symptoms long after they’ve undergone The Change – or even had hysterectomies.
It’s an individual disease, and you’re one without pain, which is awesome! I hope it stays that way!! But Lupron Depot is not a long-lasting medical treatment and it may not help with any issues. Same goes for Orlissa. It’s something you can only take temporarily. Ablation or Excision surgery are also not a cure. Excision is considered the gold standard way to remove the disease from the body, but future surgeries may be required. A hysterectomy is not a cure, whether the entire uterus, cervix, fallopian tubes, and ovaries are removed. Some women have relief; some don’t.
So the deicsion is yours. Fight for what you do and DO NOT want. If you don’t want Lupron, tell her you don’t want Lupron. Ditto for the hysterectomy. It’s your body, and there’s no proof it can help.
But there’s a search feature on my blog. Feel free to plug in Lupron and read all the things. Or even hysterectomy. 🙂 If you’re at a computer, the search feature works great there. If you’re on your phone, you may not be able to find the search feature (you have to be in Desktop Viewing Mode). I’ve rambled…but I’m here if you need me. And if you’re rather email me directly, please do so! 🙂
Yours,
Lisa
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I might have been included in the ‘Silent Endometriosis’ category, but wait. It’s not that simple.
As a teenager, I was generally too shy to complain about period pain. ‘Period’ was not the kind of thing I’d want to mention to anyone. Ever. Even though I occasionally fainted because of the pain, my mom, a GP, just shoved pain killers in my direction and told me to suck it up. “This is the reason men rule the world – they don’t have to put with this every month”, was more or less her view of the situation. I learnt to just get on with life, learnt lots about painkillers (I learnt to start taking them the day before I expected my period), learnt how to cope with pain and sleep deprivation and learnt lots about sucking it up.
So twenty years later when the Fertility Specialist asked whether I had painful periods, I shrugged and said probably no worse than anyone else.
It was a year later during a laparoscopy to look for a cause for my infertility that endo was found. Everywhere. That cul de sac obliterated, my kidney threatened by a ureter that was half obstructed, a 5 mm endometrioma, etc. My periods after the lap was suddenly so much better than ever. No more crippling pain going down my left leg, as the endo around my nerve was taken care of. I slept better. My life got so much better. I even conceived two kids with help from the Fertility Specialist. At the moment, I’m taking Visanne – such a miracle drug! – to try and keep my organs from being (further) destructed by the endo, but that is another story.
So I always wonder, how many other sufferers of so-called ‘Silent Endometriosis’ have simply been similarly failed by doctors who shrugged off their symptoms and by a society where menstruation remains a taboo subject?
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Too many. I grew up thinking it was normal and just pay off the punishment down to Eve for tempting Adam with the apple
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Precisely! So many endo girls grow up thinking what we experience is simply normal. It is easier to live in denial in any case. So when we’re finally discovered when we go for infertility treatment, then look! The doc found another ‘silent endometriosis’ case? I’m pretty sceptical about the figures for so-called silent endometriosis – not saying that it’s not a thing, of course. I just think it’s probably overrated and overestimated.
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Thank you 😀 I feel less alone
Diagnosis with silent endometriosis January 2019 @40 years old stage 4 ……preparing for complex surgery latter this year.
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I have stage 3-4 silent endo, 41
. I thought i had it for a while as i had digestive issues and low amh. I also thought there is a link between histamine intolerance and endo. Anyway, they ignored me but they were monitoring some cyst. It looked like the cyst was growing so they had to operate. It turned out just a fybroid but found ihave stage 3-4 endo with one tube blocked. I still have almost no sympthoms but now i am doing an alternative treatment.i also did a microbiome analysis of my vagina and found pathogens. Endo is triggered by pathogens in cervix. I am fixing that also.
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Thank you for this article. I just found out that I have silent endometriosis on my uterosacral ligaments. My only indications were severely diminished ovarian reserve at 35 years of age and recurrent miscarriages. It’s difficult to say if endo was the cause because I also discovered that I have a partial septate uterus (more common in endo), chronic endometrits (more common in endo) and uterine scaring. Nonetheless- I’m following the advice of my doctor to have the endo implants and lesions removed. I’m a bit nervous!
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Hang in there and let us know if you need anything!!
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Please feel free to email me with any questions or concerns or if you just want someone to vent to!
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