Last night, my boyfriend and I were talking about Endo’s “weirdness” how it can pop up in strange and unheard of places, and he popped the question (no, not THE question…), “Are there any reports of men having Endometriosis?” I remembered reading somewhere that there were a few rare cases of it, but hadn’t read them deeply enough to understand their situations, diagnoses, and prognoses. So, we have our topic for today!!
In rare cases, cis-men develop Endometriosis. Transmen also suffer from the disease. But we will focus on cis-men for this blog: it appears many have been treated with long-term or large doses of estrogen therapy, but some are healthy men who have no history of cancer or estrogen treatment. Here’s what I could find:
A 21-year-old man complained of lower abdominal pain. He suffered from a condition known as PMDS (Persistent Mullerian Duct Syndrome) and had been undergoing testosterone treatment since he was 18 years old. PMDS is a rare medical condition where both male and female sexual organs are present. An MRI of his abdomen revealed that he had a cervix and uterus with gonads (ovaries) and fallopian tubes. He underwent a hysterectomy, removing his uterus, gonads, and fallopian tubes. All of the tissue was biopsied and was shown to have Endometriosis. It is unknown how he fared after surgery, or if he received any sort of subsequent treatment. However, there was one article that men with PMDS who have a hysterectomy and remove their ovaries may be thrown into menopause! Poor guys!
A 27-year-old man went to his physician with complaints of scrotal pain. Unfortunately, the abstract does not describe his medical history or diagnosis but does hint that whatever it was that was bothering him was found to have inflammation of a tube at the back of one of his testicles, which was later shown to be Endometriosis.
A study published on January 31, 2018, discusses the case of a 40-year-old man who complained of lower abdominal pain on the right side the radiated into his right flank. It had been constant for the past three days and he began to bloat. He was in good health except for some asthma, which he treated with steroids a week before. A CT scan and MRI both confirmed the presence of a cyst on the tube that carries sperm from his testicles to his urethra. A cystourethroscopy was performed, which allowed his doctors to see inside his urethra and prostate. The mass was surgically removed during a laparoscopy, described as a cyst filled with brown fluid, and biopsied. He received a “highly unexpected diagnosis” of Endometriosis. And the symptoms and pain were gone after surgery. The authors of this study are intrigued and hope that the findings of Endometriosis in men may prove against the retrograde menstruation theory.
A study published in September 2018’s edition of International Journal of Surgical Pathology highlights the cases of two men, 43 and 50 years old, who developed a testicular mass. Both biopsies came back as Endometriosis. And neither man had been exposed to any significant chemicals or hormones. The authors state that the fact that the masses were found in the Müllerian ducts support the theory of Endometriosis developing from embryonic remnants.
A 47-year-old man had undergone three prior surgeries to repair his inguinal hernia. He went to the hospital for a fourth inguinal hernia surgery and also had complaints of infertility. While in surgery, a mass was discovered next to his spermatic cord, which was removed and biopsied. It was discovered to be Endometriosis. Prior to this discovery, the patient had been taking Fertilin, an anti-estrogenic medicine to help combat his infertility and boost his sperm health and activity. The article does not disclose any prognosis of the patient after his release from the hospital. The article does state; however, that it was interesting that most men who develop Endometriosis have a history of estrogen therapy, but their patient had a history of ANTI-estrogen therapy…Interesting indeed.
In 1979, a 50-year-old man was found to have Endometriosis in his bladder. In 1955, he had his prostate removed due to the presence of an adenocarcinoma. Over the next five years, all of his annual rectal exams were normal. Eleven years later, he suffered from a ruptured appendix and bowel blockage, requiring surgery. Three months later, he was readmitted to the hospital with complaints of rectal bleeding and diarrhea. It was discovered that he had a hard nodule in his rectum. Biopsy found it similar to the adenocarcinoma that was previously excised from his prostate, so both of his testes were removed. He was prescribed 12 mg of Tace (estrogen therapy) to be taken daily. In 1972 (four years later), he complained of blood in his urine. A cystoscopy revealed a nodule inside his bladder. A portion was removed for biopsy: it appeared identical to endometrium, but a diagnosis of Endometriosis was not given. Instead, his Tace dosage was doubled to 24mg per day. Nearly a year later, he was hospitalized due to blood in his urine. Imaging studies showed a build-up of fluid in his left kidney due to a bladder obstruction. A cystoscopy was performed and a large lesion was blocking his ureter opening. Biopsy confirmed the presence of Endometriosis on and within his bladder wall. At that time, is prior specimens were re-biopsied and confirmed as Endometriosios. That portion of his bladder was resected. He was taken off of Tace and prescribed a regimen of birth control pills. He continued to have intermittent blood in his urine and four months after starting birth control had a “hemorrhagic episode,” the birth control was discontinued, and he underwent a further resection of the newly-bleeding bladder. His symptoms disappeared.
A study published in 2014 shows a 52-year-old man went to the E.R. with complaints of “excruciating stabbing pain in the right lower abdomen and pelvis area for 3 weeks. The pain was worse on getting up from a supine position and was not relieved by bowel movements. It slightly increased upon urination as well.” Seven months before, he had undergone inguinal hernia repair (which had been surgically repaired a few times before) and had a medical history of cirrhosis due to Hepatitis C. He underwent a diagnostic laparoscopy and a mass was discovered attached to his bladder and his hernia site. It was filled with blood, was removed, and biopsied. It was Endometriosis, complete with it’s own estrogen and progesterone receptors. After his surgery, his pain completely resolved.
In 2019, a study was published of a 54-year-old man who began to have blood in his urine. It didn’t hurt, it was just there. He had a medical history of hypertensoin, Diabetes, and he was obese. A cystoscopy was performed and a lesion was discovered at the base of his bladder. A transurethral resection was performed and the lesion was removed. A biopsy confirmed it was, in fact, Endometriosis. The possibilty of a lab mix-up was considered, but the results were confirmed as belonging to that 54-year-old man. And a follow-up six months later found no recurrent lesion growth. The authors stress that male Endometriosis is incredibly rare, but possible. And stated that obesity can increase aromatase activity, converting testosterone to estrogen.
A 69-year-old man who had prostate cancer and undergone 9 years of hormonal therapy developed Endometriosis. A lesion was found within his testicle, which had also developed cysts. Tests of the tissue and cysts confirmed the presence of Endometriosis lesions. They attribute that the prolonged estrogen therapy to the development of Endometriosis.
A 73-year-old man had tissue removed from his bladder, which was “histologically indistinguishable” from Endometriosis. He had begun to suffer from hydronephrosis, which is when your kidney swells due to a build-up of urine, which had been caused by his bladder Endo lesions. For the past five years, he had been treating his prostate cancer with Estrogen therapy.
A 74-year-old man complained of having blood in his urine. Five years prior he had his prostrate removed due to prostate cancer and had been treated with Leuprolin (a form of Lupron) and Ethinyl Estradiol (an oral contraceptive). Bladder cancer was suspected due to the blood in his urine and he underwent imaging studies and an exploratory surgery of his bladder. He had a small tumor inside of his bladder, which was partially removed and biopsied. The mass had estrogen and progesterone receptors and was determined to be Endometriosis. Six months after he stopped taking Ethinyl Estradiol, the mass shrank. The authors of the study suspect that it was his estrogen treatment that led to the development of Endometriosis, and also attribute it’s disappearances to the discontinuation of the oral contraceptives.
Back in 1971, an 80-year-old man was found to have Endometriosis on his bladder, but only after several procedures to confirm this. He was previously medically castrated in 1958 due to blood in his urine and a suspected case of prostatism. At that time, it was discovered that he had a blockage in the bladder neck. The blockage was removed, later confirmed as a adenocarcinoma (a tumor). After the procedure, he was prescribed estrogen, 12mg to be taken daily. Four months later, he went in for surgery to have his prostate gland removed. Biopsy showed abnormal cell growth on the prostate, as well as a carcinoma, which was removed. He continued to take the 12mg of Tace daily…with no recurrence of the carcinoma during annual examinations. In 1968, he was once more seen by physicians due to blood in his urine. Testing failed to reveal a cause. Nearly a year later, the blood in the urine returned. This time, it was so “profuse” that it required several transfusions before physicians could perform a cystoscopy to look up into the bladder. Once inside, they found a 1cm “dark-brown lesion) on the right side of his bladder. The pathology suggested Endometriosis and the physicians thought maybe there had been a mix-up in the lab and some uterine tissue was mixed in with the sample. Two months later, (yep…you guessed it) there was more blood in his urine. The biopsy for this third cystoscopy came back as a bladder infection. He continued to have regular blood in his urine after that procedure. In April 1970 (six months the “bladder infection” diagnosis), he underwent yet another cystoscopy, wherein another dark lesion (in the same spot) was located and biopsied. Once more, it was strongly suggested to be Endometriosis. A week later, a resection of his bladder was performed. A “firm, golf-ball size, growth-like structure” was found within his bladder and in the bladder wall.. Upon examination of the growth, it ruptured – spilling “old blood” (sound familiar?). They dug around in his pelvic cavity searching for any signs of female organs: 100% male insides. The patient did well after the procedure. This may very well be the first written account of Endometriosis in a male patient.
An 83-year-old man developed an endometrioma (chocolate cyst) in his abdominal wall. He had previously received over 10 years of TACE treatment (a chemotherapy procedure to kill tumors) for prostate cancer. This abstract hints that the endometrioma was removed, with no recurrence. However, he continued to suffer from his prostate cancer, but died in 1979 of heart disease. His physicians had hoped to more thoroughly examine his remains for clues as to why he developed an endometrioma, but no postmortem examination was conducted.
These are not all of the reported cases of men with Endometriosis; I’m sure I’ve missed a few. Most of the men diagnosed with Endometriosis had the commonality of estrogen therapy. Another two shared a history of recurrent inguinal hernia surgeries. One young man had a functioning uterus and ovaries, which produced estrogen. And some men have no abnormal medical or treatment history; just a spontaneous development of symptoms.
Many doctors believe that the role of estrogen may aid in the development of Endometriosis in men. Others believe the men may have “bits of female organs” still in their bodies from their developmental stages as a fetus, although several tested did not show signs of any remnant female bits. As usual : Endometriosis is a mystery; in women, as well as men. However, I would think that these few, rare cases would prompt the medical and scientific community to research further any link between heightened estrogen levels and Endometriosis…
What are your thoughts? I’d love to hear them!
*Updated March 27, 2019*
Avicenna Journal of Medicine : Article (2014) An Unusual Cause of Abdominal Pain in a Male Patient : Endometriosis
Cancer : Article (1979) Endometriosis of the Urinary Bladder in a Man with Prostatic Carcinoma
Fertility and Sterility : Article (2008) Endometriosis in a Male with Persistent Mullerian Duct Syndrome
Case Reports in Obstetrics & Gynecology (.pdf download) (Jan. 2018) – Endometriosis in a Man as a Rare Source of Abdominal Pain: A Case Report and a Review of the Literature
International Journal of Surgical Pathology Abstract (Sept. 2018) – Endometriosis with Cystic Degeneration: A Rare Disease in Males
Pathology : Abstract (Feb. 2019) – The Bleeding Obvious – A Case of Male Endometriosis (You may be able to access the full study)
The Journal of Urology : Abstract (1971) Endometriosis of the Bladder in a Male Patient (you may be able to access the entire article on Scihub)
The Journal of Urology : Abstract (1980) Endometriosis of the Male Urinary System : a Case Report
The American Surgeon : Abstract (1985) Endometriosis in the male
Urology : Abstract (2006) Cystic Endometriosis of the Epididymis
Journal of Laboratory Physicians : Article (2010) Endometriosis – Morphology, Clinical Presentations and Molecular Pathology
Gut and Liver : Article (2012) An Unusual Cause of Inguinal Hernia in a Male Patient : Endometriosis
Pathology – Research and Practice 208 : Abstract (2012) Paratesticular Endometriosis in a Man with a Prolonged Hormonal Therapy for Prostatic Carcinoma
International Journal of Urology : Article (2012) Bladder Endometriosis Developed After Long-term Estrogen Therapy for Prostate Cancer
~ 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
15 thoughts on “Reader’s Choice : Can Men Get Endometriosis?”
It’s mad to think that men can get it! I totally agree with you, I really don’t know why endo hasn’t been researched more, it’s about time really.
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Totally about time. I’m amazed that something I’d never heard of before my diagnosis affects SO many people, and it’s still an “unknown ” cause & cure disease. Baffling!
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I know! When you think of the times we live in, you’d think there would have been more medical studies and research behind it by now.
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It’s interesting to read that men could get symptoms of Endometriosis. Especially when it is usually classified under women only. And with the lack of knowledge endometriosis gets as it is, imagine if men have the symptoms and it is not understood they have the disorder so they go just as long as most of us (even longer) trying to figure out what it is they have. It would be very interesting to see more studies on how this might possibly evolve in the medical field.
Endometriosis was discovered in the 1950s and seems to have had a slow start in research investigations. Stereotypes and myths most likely were some of the barriers but also a lack of technology since scanning generally cannot definitively substantiate endometriosis. While I feel endometriosis deserves to be a specialty board certification by its own right, crucial knowledge needs to be disseminated across all disciplines to ensure quality for this sub-population wherever they happen to intersect the health care delivery system.
Lately, endometriosis research seems to be growing by leaps and bounds and is absolutely fascinating. New research shows the disease is systemic and behaves like a malignant condition by metastasizing distal sites with stem cells and by taking on a life of its own. The detection of endometrial implants distal to the pelvis is increasing as the access to specialized and skilled gynecologists has improved. The disease is classified as benign but the structural damage the condition causes can be life-threatening and most often life-altering. Furthermore, endometriosis has been shown to be a precursor to low-medium grade ovarian cancers, adenocarcinoma and certain endocrine and brain cancers but at a very low incidence rate. The disease encompasses immune and hormonal alterations. Some researchers are also questioning the presence of bleeding abnormalities which could explain the difference in severity among cases. Whether the bleeding tendency is an inherit feature of endometriosis or a coexisting condition seems to need further investigation. The more recent discoveries of endometriosis in men and postmenopausal women seems to dismiss the retrograde flow theory. Dioxin exposure as an initiator and embryonic remanent tissue are plausible causative theories which seem more promising because the endometrial tissue is not identical to the endometrium.
Endometriosis places a big damper on the lives of those affected by the condition. As patient with stage 4-5 endometriosis (depending what scale you are using) and permanent infertility, I am so hopeful for more viable treatment options which will some day eradicate all the human suffering this disease causes.
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Well said, Pamela! WELL SAID! ❤
Thank you. 🙂