Endometriosis on your skin

skinIt’s about time I research more about Endometriosis being found in places other than your pelvic region.  We’ve already covered lungs, spine, and eyes, and today we’re going to delve into cases of Endometriosis and skin.  Skin? Yes, skin.  I’ve read that it’s rare, just like the other areas outside of the pelvic cavity…but, it does occur.  Some theorize it is implanted via the lymphatic or vascular systems; others think the cells are transplanted via surgery.

There seem to be two common categories of Endometriosis and the skin : spontaneous Endometriosis and scar Endometriosis.  Spontaneous Endo simply appears in random places on healthy skin (cutaneous or subcutaneous).  Scar Endo is found within scar tissue from prior surgeries or injuries.  It appears that surgical excision/removal of the Endometriosis lesions from the skin is the most common and effective way of handling the lesions.  Some surgeries may leave defects, which may (or may not) be repaired or rebuilt with a surgical mesh.  Some studies suggest that hormonal treatment may be too harsh for the patient for solitary lesions.

The first recorded case of Endometriosis (or an endometrioma) in the belly button was reported in 1886, and was referred to as a “Villar’s Nodule,” named so after  Dr. Francis Villar.  It’s described in his publication Tumeurs de L’ombilic. You will still find credit and citations to Dr. Villar in many current studies and reports regarding cutaneous Endometriosis.

A study presented in 1967 involved a 27-year-old woman who complained of pain and discharge from her anus during her periods.  Upon close inspection, nodules were discovered on her anal sphincter.  They were surgically removed and biopsied, and Endometriosis was confirmed.  Unfortunately, I do not have access to the entire article and cannot recant how her recovery ended.  But…the anus? Ugh. It’s everywhere… (insert “pain in the ass” joke here).

A study published in 1995 focused around a 46-year-old woman who had complained of a “nodule” on her belly button for the past year and abdominal pain for the past two years.  Her belly button would occasionally bleed.  She had no prior surgical history, did not take birth control, and did not complain of painful periods.  The nodule was surgically removed, biopsied, and Endometriosis was discovered.  After the removal of the mass, she did not have any recurrence.

A study was published in 2007 where a 47-year-old woman had complaints of a darkened  spot on her caesarean scar, which became increasingly painful during her periods.  She had her caesarean delivery 12 years prior, and had no previous health issues.  Upon inspection, beneath the discoloration was a small, subcutaneous mass.  An initial incision biopsy of the mass’s tissues revealed the presence of Endometriosis, and the mass was excised.  Endometriosis can be found in many scars, and because hers took 12 years to manifest, physicians reported, “[t]his leads us to the hypothesis that the mechanical migration theory played an important role in the development of the disease, since it appeared on the caesarean scar (a low-resistance point) after many years.”

In 2009, a 46-year-old woman was reported to have a lesion in her umbilicus (aka belly button), which had a little black “mass.”  It was surgically removed and biopsied…the results were consistent with Endometriosis.  One theory as to why Endo grows in your belly button is that the cells were transferred during abdominal surgery and unknowingly deposited there…however, this woman had no history of abdominal surgeries.  She also did not have any abnormal menstruation history .  It was a mystery.  Eighteen months later, she had no recurrent growths or symptoms.  A photograph of the black mass in her belly button can be seen by clicking the Acta Dermato Venereologica article under “Resources.”

In another study published in 2009, a 36-year-old woman would swell and bleed from her belly button during her monthly cycles.  The surgeons removed the mass from her umbilicus, which was biopsied and the presence of Endometriosis was confirmed.  A year later, she was still free of recurrent symptoms.

A 2010 study analyzed the case files of 376 women who were treated at the Fundacion Jimenez Diaz in Madrid, Spain.  Of those, 15 were treated for cutaneous Endometriosis.

In 2011, a 15-year-old girl went to the Emergency Room with complaints of pain and swelling to her vulva.  She had suffered an abrasion (they don’t go into details of “how”), 11 months prior.  The E.R. suspected Herpes due to the presence of lesions and treated her for such.  Regardless, her Herpes test came back negative.  After recurring symptoms of the same issues, biopsies were performed of the lesions found on her vulva, and were determined to be Endometriosis.  Unfortunately, her specific treatment at the E.R. is a common occurrence for many Endo sufferers who go to the E.R. : an STD is initially insinuated and tests are run, resulting in humiliation and a general sense of mistrust for the medical community.

A study published on May 1, 2015, in the Journal of Clinical and Diagnostic Research highlights an 18-year-old girl had begun to bleed from her fingertip during her menstrual cycle.  Her pelvic and rectal examinations were normal, but her fingertip had a small, discolored lesion, which had a distinct point which would continuously ooze blood during her periods over the past three months.  Due to financial issues, she could not afford to have an MRI or exploratory laparoscopic surgery of her abdomen.  Instead, doctors decided to biopsy the tissue around the lesion on her finger.  Lo and behold : Endometriosis.  The surgical excision of the lesion on her finger resolved her bleeding finger completely.  If you’d like to see a photograph, please feel free to click on their article referenced under “Resources” below.

A 2016 published case report was of a 49-year-old woman who had her gall bladder removed laparscopically in 1991.  In 2012, the muscle area beneath her belly button had become very painful.  She was previously diagnosed with painful periods and Endometriosis and she insisted on hormone therapy, which helped reduce her painful symptoms.  Two years later, the mass had grown to approximately 30mm (a little bigger than an inch) beneath her belly button and she had it surgically removed.  It was biopsied and confirmed as Endometriosis.  Although Endometriosis has been known to transfer during Endometriosis excision surgeries, this is the first report (as far as the authors know) of the tranferrance occuring during a gall bladder removal surgery.

A 2017 article discusses a 30-year-old woman with no history of Endometriosis or prior surgeries.  She was on Depo Provera and 9 months after stopping the contraceptive, she developed painful, bleeding little brown lumps in her belly button (this study has photos!).  They bled when she was on her period.  She had been to several physicians complaining of the bumps and had most recently been diagnosed with contact dermatitis and given creams.  When those didn’t work, she was referred to a dermatologist.  They took a shave biopsy of the bumps and they came back positive as Endometriosis.  She was then referred to a plastic surgeon to remove the bumps and a gynecologist to look further into a possible Endometriosis diagnosis.  Unfortunately, the study ends there.  The authors of this study stress the importance of conducting biopsies of masses before offering any type of diagnosis.

A 2017 abstract is about a woman who complained of a nodule in her belly button that bled while she was on her period.  Her physicians treated it as if it was a keloid scar, with cortisone injections.  But when those didn’t help, they suspected umbilical endometriosis.  A biopsy was performed on the nodule and confirmed as Endometriosis.  She was referred to her gynecologist for further treatment.

A study published in August 2017 was of a 29-year-old woman who had a nodule in her belly that would swell and bleed when she was on her period.  She had her appendix removed when she was 6 years old.  Imaging studies led to an exporatory laparoscopy.  They found extensive Endometriosis and excised it, as well as the lump from her belly button, which was biopsied and confirmed as Endo.  There’s a picture of her belly button lump pre- and post-op here.

One study summed up what any Endo suffer already knows:

“Education of all doctors, including the primary care physicians, is important to help early diagnosis and treatment of this agonising condition.” ~Cutaneous Endometriosis; A. Agarwal, Y.F. Fong

What did I learn from all of this?  So much!!  But most importantly?  Pay attention to your body.  If something doesn’t look or feel right, don’t be afraid to ask your doctor.  And if you’re bleeding out of a weird spot during your periods, dude…seriously…have your doctors check it out!

Do you, or someone you know, have skin Endometriosis?  I’m so fascinated (and terrified), I’d love to hear the story! Drop a comment below…

*Updated August 9, 2017*

Resources:

Acta Dermato Venereologica : Article (2007) Diagnosis and Treatment of Post-caesarean Scar Endometriosis

Acta Dermato Venereologica : Article (2009) Spontaneous Endometriosis in an Umbilical Skin Lesion

Deep Dyve : Article (2010) Cutaneous Endometriosis : A Review of 15 Cases Diagnosed at a Single Institution

Dermitol Sinica : Article (1995) Cutaneous Endometriosis of the Umbilicus

Gallica

Journal of Clinical and Diagnostic Research : Article (2015) Spontaneous Fingertip Endometriosis : A Rare Case Report

Journal of Endometriosis and Pelvic Pain Disorders : Abstract (2011) A Case of Cutaneous Endometriosis Following Vulvar Injury

Journal of Rare Disorders: Diagnosis and Therapy : Article (2017) Spontaneous Cutaneous Endometriosis of Umbilicus: A Case Report

Keio University : Abstract (2016) Abdominal Wall Endometriosis that Developed at the Port Site After Laparoscopic Cholecystectomy

Royal Australasian College of Surgeons : Article (2017) Umbilical Endometriosis: A Potential Encounter for General Surgeons

Singapore Medical Journal : Article (2008) Cutaneous Endometriosis

Springer Link : Abstract (1967) Endometriosis of the Anal Canal : Presentation of a Case

U.S. National Library of Medicine : Abstract (2009) Spontaneous Endometriosis in an Umbilical Skin Lesion

U.S. National Library of Medicine : Abstract (2009) Spontaneous Umbilicus Endometriosis : a Case Report with One-year Follow-up.

U.S. National Library of Medicine : Abstract (2017) Umbilical Endometriosis Mimicking a Keloid in a Young Black Woman: A Case Report

~ 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

16 thoughts on “Endometriosis on your skin

  1. I think I may have some endo nodules on my skin. I am asking my doctor about them but they have been increasing. They don’t bleed as such but they are painful in waves. On my arm and my leg??
    The mind boggles.

    Helen

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  2. I have suffered with ends since I was 21 (now 37) and have had 14 operations, I have been covered and it has grown in my bowel, bladder, ovaries and has even lead to my ovary sticking to the tube from kidney causing the kidney to fail

    I have have what I can only describe as boil like spots on my bum cheeks, they flare up with every period are extremely sore, can bleed and go down as soon as the period finishes, I know this is endo related x

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  3. Hello, I am 30 years old. About two years ago I was at the gym, where I laid down on a machine to work on hamstrings. Right then when landing on my abdomen I felt like I just landed on a bruise. I went home and discovered a dime size bump in my bellybutton and that had a purple hue to it. It was painful and I had told my roommate about it. He was an EMT and immediately jumped to the conclusion that I got some sort of skin infection from the gym. I went to the emergency room. After recieving an MRI and ultra sound they saw nothing. Then they came to the conclusion of Cellultis. I was given antibiotics and on my way. Not even a week later I’m still in pain and feel the antibiotics haven’t made my bump even diminish in size. Went back to that doctor where I was given more antibiotics. Two years later, I get medical insurance. I explain to my doctor my painful belly button and how the emergency room doctors diagnosed it as cellulitis. She proceeds to numb my bump, slice into it and tells me she sees a little bit of puss. Then I am sent home (with more antibiotics) and told to do a seal salt soak to my belly button to draw out puss. Week later nothing’s drawn out. I call the doctor back to set an appointment. She sees nothing had come out and decided to make a dermatology appointment. Two weeks later I’m sent to the dermatologist office. I explain my painful bump and we schedule a biopsy. After getting the procedure I was in even more pain than before. Now my stomach to the bottom right of the bump itches. I even feel it growing or moving. Two weeks of waiting I find out I am diagnosed with cutaneous endometriosis. The dermotologist says she can refer me to a surgeon to fully remove it if it’s too painful. Before making any choices I right away call my best friend who is a nurse and I told her of my diagnosis and she tells me to make an appointment with an OB GYN immediately. I finally have my appointment in 3 days to begin my journey. All I know is, Im 30 years old, I’ve never been pregnant and before all this my husband and I were trying.

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  4. Hi, I’ve had endometriosis for years. Have gone through the entire process of shots at 18 to put my body into menopause, multiple surgeries to burn the endo, etc. At the age of 28 it was discovered my endo went completely through my lg. intestines (good times). I made the decision that enough was enough and went through a total hysterectomy. I’m now 45. For a while that resolved all pain issues….and I had gained a new lease on life and I was so happy. I didn’t know what it was to be without pain after so many years of it. About 7 or so years ago I started feeling that very same distinct pain I had felt for years. There was no mistaking that pain! I started to research to see if it was actually possible to in fact have endo after a total hysterectomy. Short answer, YES :O Not what I wanted to see but it made sense for the pain. For several years I asked my various physicians if that was possible and they all laughed…..until my recent visit to the CLE Clinic. I ran into an oncologist who said yes, it’s very likely that is what you are feeling, they see it there. Good news, I’m not crazy (Phew…. I questioned that a few times). Bad news, I live in FL and need to find a physician here that is skilled in that area, will believe me and test me for it. I say I want to be tested because having a total hysterectomy, I haven’t had a period for years. This past week I was bleeding again, and now from my bum again also. I’d love if anyone can suggest a physician who this is their strong suit and in fact will believe me. That said, I welcome suggestions. I live on the south west coast of FL but also travel to Orlando every other week. Many thanks for your posting, it is such an unfortunate disease that so many suffer with.

    God bless!

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    1. Hi hun! First of all, I am so sorry your pain has returned. Secondly, I personally do not know of any experts in Florida, but have posted your question to our Facebook page in the hopes that someone there will be able to offer suggestions! Also, here are some tips and tricks to finding someone in your area: https://bloominuterus.com/2016/01/04/readers-choice-how-to-find-an-endo-specialist-in-my-area/ Wishing you the best of luck, and some relief. Thank you for sharing with us today. And God bless you, too. Stay positive and stay strong during these times. ❤

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    2. Please contact Doctor Shailesh Puntambekar who I consider one of the best in the world. He has helped my wife 6 weeks ago when we left South Africa to have the operation in India. You will have no regrets.
      You could tell him that u were referred by Ahmed from South Africa. You could find his videos on YouTube.
      Dr. Medical Director Consultant Cancer Surgeon & Laparoscopic Surgeon
      HOSPITAl I, S GALAX\ Galaxy CARE Laparo · Scopy Institute
      +91 98220 23706 Mobile no

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  5. Hi
    My wife was diagnosed with endometriosis after 5 years of pain and suffering. We have been to many gynecologist, urologist, nephrologist and rheumatologist that could not diagnose the root of her kidneys going into failure. The local options was steroids to suppress the problem. We never gave up searching on google for solutions and found that local doctors did not have much understanding about endometriosis and fibroids. Her condition was so bad that her organs were fused and the endometriosis was now spreading into her bladder. We were advised by Dr Shailesh Puntambekar in india to do a MRI scan and she was positively diagnosed with endometriosis and fibroids. We flew to Puna in India and a laparoscopic procedure was done by Dr Shailesh. His experience in these procedures are phenomenal. We would never look back. You could watch the operation live. Dr Shailesh had the experience to clear the endometriosis from within the bladder, doing a complete hysterectomy with minimum blood loss and pain. We flew back to South Africa within 7 days after the laparoscopic operation. The costs was also much cheaper than what we would incur in SA. My wife’s condition has improved tremendously and I would like to inform people that endometriosis can also affect your immune system. Please email me if you ever need assistance. I am no doctor but could help people referring you the right help.

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  6. Hi,
    I have cutaneous endometriosis and am due to have surgery to remove it in two days time. They will also be looking for endometriosis in my pelvis, although I don’t struggle with those symptoms. I’m hoping the surgery fixes things for me, as it’s pretty miserable!
    Emma

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