I know because they’ve told me.
Their autoimmune disease affects their reproductive organs, but they keep that painful fact to themselves.
Autoimmune diseases that affect the genitals include Psoriasis, Lichen Sclerosis, and Hidradenitis Suppurativa, among others.
Then there are the conditions that affect the reproductive system internally, like Endometriosis.
Still others occur in the pelvic region, like Interstitial Cystitis.
Any of these conditions can have a profound affect on a person’s sexuality.
Why the Silence?
Secrecy about the impacts of these autoimmune conditions is a by-product of our repressive attitude toward sexuality generally (a subject I explore in 3 Steps for Hacking Sexuality).
Today I shed more light on autoimmune conditions that affect the reproductive organs by sharing a case study of a person who lives with genital psoriasis, a form that affects up to 50% of people with psoriasis according to the National Psoriasis Foundation, but is rarely mentioned.
Websites that address genital psoriasis are brisk and cheerful.
They suggest that with the right ointment and the right attitude, a raw and weeping genital area could be almost invigorating. Or at least no more than an inconvenience.
While a positive attitude is important in addressing any chronic health issue, ignoring the reality of people’s suffering leads to increased isolation. And for people with health conditions that affect their sexual functioning, even more shame and secrecy.
So we won’t be brisk and cheerful today.
But we will be compassionate and optimistic.
Because many people have found ways to live (and love) with these conditions, and some have been able to reverse them through healing protocols.
A Case Study
Matthew’s earliest memory was of physical pain that never went away. What his mum thought was a really bad, persistent diaper rash was actually genital psoriasis.
As a child, he also had psoriasis on other parts of his body, but the plaques of skin in his groin and on his penis were much more fragile than those occurring elsewhere and would fall off easily, leaving raw, weeping skin underneath.
The only treatment was steroid cream, which thinned the skin even further.
Throughout childhood his underpants were always stained with blood from these psoriasis lesions.
Living with Ridicule
When Matthew reached puberty, his intense need for intimate connection superseded his inhibitions about the state of his body and he became sexually active in his early teens.
His older brothers had always teased him relentlessly about his psoriasis, and his friends were also constantly insulting him, in the bantering style of teenage boys.
His visible psoriasis made him an easy target, even with close friends. And Matthew knew he could never tell his friends about the psoriasis he had in places they couldn’t see!
So his friendships began to revolve around drug and alcohol use, and intimate relationships with girlfriends became the primary way he met his need for connection. He was able to find some relief from his inner turmoil about living with psoriasis through this intimacy.
Genital psoriasis isn’t pretty, and there were times when prospective partners were repulsed by it or thought he must have an STD. But the girlfriends who were accepting helped him to feel that he wasn’t destined to be a pariah.
When the genital psoriasis was at its worst during his teen years, he would try to avoid getting an erection, as that would cause the skin on his penis to split and bleed.
At these times, his main strategy was to try not to have sexual thoughts.
In retrospect he thinks that this practice (though he didn’t always excel at it) had a profound effect on him. He learned to interact with girls without objectifying them sexually, and as a result related to girls differently than most boys his age and always had a lot of female friends.
Matthew started self-medicating with alcohol and drugs at sixteen, and continued until his early thirties, even though the genital psoriasis was in remission during most of his twenties.
Partying was a way to normalize himself with other people so that he didn’t feel like a freak, and offered the side-benefit of oblivion from the internalized anguish of having a chronic health condition.
Remission & Recurrence
The genital psoriasis returned in his late twenties, right about the time when his relationship with his first wife began to fail.
After the divorce, the genital psoriasis went into remission again and stayed away during his courtship with his second wife (that’s me!)
It wasn’t until the general decline in his health that started in his late thirties that it became problematic again.
According to Matthew, the state of his groin is a bell-weather for the state of his health generally. If an autoimmune flare begins, it always starts there.
Matthew has found some strategies that help him manage genital psoriasis. These include:
- The dietary elements of the paleo Autoimmune Protocol;
- Salt water baths;
- Sun exposure (he’s a splendid sight in the summertime when fully exposed to the sun);
- Stress management;
- Psorganic Ointment from Nezza Naturals; and
- Judicious use of topical steroid creams.
In the next installment of this post I’ll delve into how Matthew and I have dealt with genital psoriasis in our relationship.
In the meantime, if you are a person who has experience with one or more autoimmune conditions that impact your reproductive system or pelvic area, and you feel comfortable sharing information about that anonymously, you’ll find a link to a confidential survey here.
I am conducting research on this subject because I think we would all benefit from a better understanding about the impacts of these conditions.
Previously I have conducted similar research projects:
- Women and weight on the Autoimmune Protocol with Joanna Frankham; and
- The experiences people have with ‘brain fog‘ on Healing Protocols with Rory Linehan.