#vulvicryptic variations

Do you have vulvar hypospadias?

62.9% said "yes." 37.1% said "I'm questioning if I do."

2. What type of hypospadias do you have or suspect you have?

32.8% said "vestibular / partial." 32.8% said "vestovestibular / subtotal." 15.5% said "vaginal / total / persistent urogenital sinus." 19% said "I'm unsure." "Prefer not to answer" was an option, but no respondents chose it.

3. Throughout your life, have you experienced chronic / frequent / reoccurring (with no other known cause)

Respondents could select multiple answers.

40.5% said "urinary tract infections." 41.4% said "incidents of incontinence or near-incontinence." 56% said "dribbling urine after urinating." 50.9% said "urinary retention." 33.6% said "pain while urinating in general." 37.1% said "pain while urinating after vaginal penetration." 57.8% said "discomfort or pain during vaginal penetration." 19% said "inability to do vaginal penetration at all." 54.3% said "discomfort or pain when inserting / removing menstrual products regardless of size or method of insertion" 16.4% said "menstrual products slipping down or falling out regardless of size or method of insertion." 45.7% said "constantly feeling the presence of an internal menstrual product regardless of size or method of insertion." 22.4% said "inability to urinate while using a tampon / cup / disc." 40.5% said "reduced or no erogenous (sexual) sensation where it is typically expected in the genital area." 17.2% said "reduced or no sensation in general in part or all of the urogenital region." One respondent (0.9%) said "none."

When given the chance to elaborate, respondents reported:

a history of chronic UTIs, particularly during childhood or around their menstrual periods

overactive bladder with urinary retention, sometimes requiring catheterization, and difficulty fully emptying the bladder

an anteriorly deflected urinary stream that caused urine to contact the perineum/anus

dribbling and wetting oneself, often when young

pain or discomfort during penetration (sexual or attempted insertion of fingers/menstrual products) sometimes leading to avoidance or difficulty with insertion

reduced erogenous sensation, making masturbation difficult or impossible until late in life, or causing the clitoris to lose sensation easily

diagnoses including hypertonic pelvic floor dysfunction, pelvic organ prolapse, and scarring on the inside of the bladder

4. Do you have any of these other congenital variations in sex characteristics?

Respondents could select multiple answers.

35.3% said "sleeve hymen" (which can also be called "redundant" or a hypertrophic hymen) 19.8% said "other atypical hymen variation" (imperforate, microperforate, cribiform, septate) 28.4% said "vaginal hypoplasia or atresia" 29.3% said "labial fusion" 12.1% said "labial hypoplasia" 19% said "labial hypertrophy" 4.3% said "urethral duplication" 39.7% said "a ridge, line, seam, or set of bumps between the urethra and the clitoris" 10.3% said "a small tube-like structure that seems to extend from the urethra." 12.1% said "clitoral hypoplasia or atresia." 19% said "clitoromegaly." 4.3% said "other ambiguous genitalia." 6% said "other urogenital variation." 31% said "higher than expected amounts of a sex hormone (hyperandrogenism, hyperestrogenism)." 8.6% said "lower than expected amounts of a sex hormone (hypoandrogenism, hypoestrogenism)." 1.7% said "any gonadal variation (ovotestes, testes where ovaries were expected, etc.)" 9.5% said "any variation of the uterus." 5.2% said "any chromosomal variation." 56% said "i am questioning if I have one or more of these traits." 2.6% said "none."

When given the chance to elaborate, respondents reported:

hymen variations, particularly sleeve, microperforate, and septate, while others were uncertain they had a hymen at all

variations in the vaginal opening include the urethra sitting on the threshold or protruding tissue that obstructs the introitus, potentially related to the hymen or other excess tissue/flaps inside the vagina

mild labial fusion, labial hypertrophy (or suspected), labial hypoplasia, and the appearance of "labia inside labia."

clitoral variations including clitoromega, a forked clitoris, or difficulty locating the clitoris entirely.

suspecting or being diagnosed with Congenital Adrenal Hyperplasia (CAH or NCAH), formerly PCOS now PMOS

hormonal variations mentioned include having "mini puberties" with temporary testosterone spikes, mild hyperandrogenism or signs of it (pre-T in some cases)

cysts on ovaries, small ovaries, endometriosis, a septate uterus, vaginal hypoplasia/atresia

5. If you would like to share any non-sex characteristic bodily variations (such as an atypical number of kidneys, scoliosis, etc.), you can do so here.

Respondents reported:

many (roughly 20%) brought up generalized joint hypermobility, or being diagnosed with/suspecting hEDS / Ehlers-Danlos syndrome / Hypermobility Spectrum Disorder, sometimes alongside POTS, and other symptoms related (fragile/stretchy skin, joint instability)

scoliosis, kyphosis, lordosis, and other spinal differences, chest wall differences (pectus excavatum, pectus carinatum), and other congenital skeletal variations

joint pain

various autoimmune conditions

various neurological conditions

flat feet

many mentioned having limited access to healthcare, and so rely heavily on self-observation rather than diagnosis

6. How long have you known or suspected you have hypospadias?

For reference, this survey was active over the course of January 2026.

8.6% said "one day or less." 19% said "a few days / a week." 15.5% said "a few weeks / a month." 37.1% said "a few months." 9.5% said "a year." 6.9% said "a few years." 2.6% said "since childhood." One respondent (0.9%) said "as long as I can remember."

7. How did you learn about the variation called "vulvar hypospadias"?

Respondents could select multiple answers.

"From my parents" was an option, but no respondents chose it. 2.6% said "from a doctor." 3.4% said "from a friend or partner." 12.9% said "from reading medical papers." 94% said "from seeing it discussed online."

(& many of you mentioned my blog specifically, which makes me happy!)

8. How did you realize, or begin suspecting, you had hypospadias?

Respondents could select multiple answers.

"My parents told me" was an option, but no respondents chose it. 1.7% said "a doctor told me." 2.6% said "a friend or partner told me." 20.7% said "reading medical papers." 76.7% said "reading / talking about it online." 89.7% said "examining my own body."

9. Do you know if you were exposed to either high androgens or high estrogen while in the womb?

4.3% said "yes; high androgens." 8.6% said "it's possible/likely; high androgens." 7.8% said "it's possible/likely but I'm not sure which." 77.6% said "I'm not sure / have no way of knowing." 1.7% said "I know I was not exposed to highandrogens or high estrogen in the womb." "Yes; high estrogens," "yes but I'm not sure which," and "it's possible/likely; high estrogens" were all options, but no respondents chose them.

10. Do you consider yourself intersex?

52.6% said "yes, entirely or partially because of my hypospadias." 7.8% said "yes, but not because of my hypospadias." 26.7% said "questioning / unsure / ambivalent." 6% said "no." 6.8% selected "Other" and wrote in their response.

(The following two questions focus on medical abuse and intersexism)

11. Have you been subjected to CIMI (coercive intersex medical interventions)?

10.3% said "yes." 9.5% said "I suspect I may have, but I'm not certain." 18.1% said "I'm not sure if I have or not." 61.2% said "no / I have no reason to believe I have." One respondent (0.9%) said "prefer not to answer.

When given the chance to elaborate, respondents reported:

scars in the genital area without clear explanation

having a fused labia operated on without justification, sometimes without anesthetic

being prescribed or coerced into taking hormonal medications, often disguised as birth control pills, even at a young age. Respondents experienced negative side effects and many were not informed of the true purpose of the medications or alternative options.

doctors not listening to reports of pain, lying about hormone levels to justify hormonal treatments, conducting genital examinations without explanation, and being forced to engage in vaginal dilation treatment.

12. Have you ever experienced other medical neglect, mistreatment, abuse, or general poor medical care as a result of / related to your hypospadias?

21.6% said "yes, many times." 10.3% said "yes, once or twice." 19.8% said "I have experienced something which may count, but I'm not sure." 12.9% said "I'm not sure if I have experienced anything that might count." 33.6% said "no." 1.7% said "prefer not to answer."

When given the chance to elaborate, respondents reported:

having issues such as chronic UTIs, yeast infections, inability to penetrate the vaginally comfortably, and visible genital differences dismissed and often attributed to personal failings

having multiple doctors, including gynecologists, urologists, and pediatricians, failed to notice or mention the unusual placement and appearance of the urethra during physical examinations, pap smears, and checkups, even in cases where it should have been blatantly obvious, or having a doctor make a vague comment on an abnormality but refuse to elaborate.

experiencing difficulty or pain during procedures like catheterization and not being listened to by providers, or being chastised for contaminating urine sample with menstrual blood due to hypospadias

actively avoided seeking medical care for genital-related issues due to fear or past negative experiences, resulting in low exposure to medical appointments where the condition could have been noted

receiving no sexual education relevant to their anatomy, leaving them unable to understand their experiences or apparent differences.

(End of medical abuse TW)