Wednesday, September 8, 2010

Tying It All Together

The thing that really bothers me of late is the fact that I had another inguinal hernia caused by my retractile testes again over the weekend. As usually happens, I was experiencing pain in my lower abdomen, significantly above the groin. When I investigated, I found that, as it chronically happens every few months, my significantly smaller testicle on the left side had retracted, and by applying pressure on the abdomen, I eventually returned it to the upper groin, where I was able to finally get it back out. It's ipsilateral, which means it only occurs on my left side.

Technically, this is considered a version of cryptorchidism, which I may have inherited from my father, who was born with an undescended testicle on the same side, and had to have it surgically corrected through a process called orchipexy, where the testes is surgically attached to the scrotum. If uterine tissue is present, usually a hysterectomy is also performed. In my case, it descends and stays down most of the time, so the doctors only repeatedly threatened an operation if it became problematic.

My first recallable incident, according to my mother, occurred when she took me to the doctor afraid that I may have appendicitis because of my abdominal pain. The doctor at the time noticed the "undescenced" testicle and issued the first "threat of surgery" that I can recall.

There is a possiblity that the condition may have been engendered by my own mother's high hormone counts, as she recalls a checkup with the doctor for her own puberty giving her such a diagnosis.

I found the following article snippet suggesting evidence to support a link between natal estrogen levels  and cryptorchidism:

The major clinical data concern the boys born of women treated during their pregnancy with diethylstilbestrol (DES), a very potent estrogen agonist, from 1950 to 1970. Some studies have reported alterations in sperm quality and a higher incidence of genital malformations, cryptorchidism, and testicular cancer than for the control population (Glaze 1984, Strohsnitter et al. 2001), whereas others found no such change (Wilcox et al. 1995). These discrepancies may be due to differences in the period of treatment during pregnancy, suggesting that there may be a specific period of sensitivity to xenoestrogens in the testis. A recent analysis of these epidemiological studies by Storgaard et al.(2006) pointed out that DES seems to have a negative effect on sperm count only if administered at high dose during the first semester of pregnancy.

-- Géraldine Delbès, Christine Levacher, and René Habert, "Estrogen effects on fetal and neonatal testicular development"

But it doesn't explain the fact that my rectractile experience is so intense, that it only occurs on one side or that I can swear there is a cervix and at least a vaginal cavity under my left scrotum, where someone drunkenly thought they were penetrating a vagina, and being able to penetrate deeply using my own hand.

But then I found in an article on Wikipedia that there is a genetic hormone deficiency that might explain not only the potentially hidden female parts, but also the cryptorchidism and the specific form of gender identity disorder that I have, where I have a fluid sense that is predominantly female and feminine, but slightly androgynous male from time to time:

Anti-Müllerian hormone also known as AMH is a protein that, in humans, is encoded by the AMH gene. It inhibits the development of the Müllerian ducts (paramesonephric ducts) in the male embryo...

...AMH prevents the development of the mullerian ducts into the uterus and other mullerian structures. The effect is ipsilateral, that is each testis suppresses Müllerian development only on its own side. In humans, this action takes place during the first 8 weeks of gestation. If no hormone is produced from the gonads, the Mullerian ducts automatically develop, while the Wolffian ducts, which are responsible for male reproductive ducts, automatically die...

Functional AMH receptors have also been found to be expressed on neurons in the brains of embryonic mice, and are thought to play a role in sexually diamorphic brain development and consequent development of gender-specific behaviours...

In men, inadequate embryonal AMH activity can lead to the Persistent Müllerian duct syndrome (PMDS), in which a rudimentary uterus is present and testes are usually undescended. The AMH gene (AMH) or the gene (AMH-RII) for its receptor are usually abnormal. AMH measurements have also become widely used in the evaluation of testicular presence and function in infants with intersex conditions, ambiguous genitalia, and cryptorchidism.
-- "Anti-Müllerian hormone

So an AMH defiency is a very plausible hypothesis for me, and as the following Wikipedia suggests explains that what I have felt physically since I was 16 is potentially grounded in reality, and not wishful thinking. As a matter of fact, it seems a reasonable diagnosis, via Occam's razor. The actual Wikipedia article on PMDS (Persistent Mullerian Duct Syndrome) is rather enlightening:

Typical features include undescended testes (cryptorchidism) and the presence of a small, underdeveloped uterus in a male infant or adult...

Cryptorchidism in AMH deficiency suggests that AMH may play a role in transabdominal testicular descent, perhaps by facilitating contraction of the gubernaculum.

Other Müllerian derivatives which may be present in at least a rudimentary form are the cervix, upper part of the vagina, and fallopian tubes.

Although persistent Müllerian duct syndrome is classified as an intersex condition, it does not involve ambiguity or malformation of the external genitalia.

-- "Persistent Mullerian duct syndrome"

As likely as it may seem in my case, it usually takes surgery to confirm, even though I have seen no other condition, yet, that adequately "explains the pain."

The other concern is that there are SRS doctors who will refuse to operate on intersex patients, possibly because it implies custom procedures, rather than something that can be reliably factorized.

The good news is that while I did disclose my retractile testicle, the surgeon saw no indicators that he could not perform my SRS.

It's just a matter now of getting to Salt Lake City in a couple of weeks, getting my relocation bonus once I start working, and use part of it to schedule the procedure with the required downpayment, then "things" should indeed seem normal for once in my life.

Hugs and God Bless,

1 comment:

  1. I had never thought about PMDS until recently. When I was about 9 years old my father saw me exiting the shower. He noticed that I only had one testicle fully descended. At that time he examined me for an inguinal hernia with the cough test. Soon after, surgery was performed to repair a double inguinal hernia. Mind you, I had no pain from the hernia.

    Years later, at the age of 24, I was injured at work and was rushed to the emergency room with a femoral hernia. My intestines had actually dropped into the side of my left leg about 8 inches down. It was obvious a repair was needed on that side, but the doctor checked and said I need a repair on the other side as well.

    Prior to surgery, I asked if he would go ahead and perform a vasectomy while he was at it. I already fathered two children and didn't want anymore.

    One week post-operatively, during my follow-up visit, the doctor had some interesting statements to make. I honestly never gave these statements any thought.

    He explained, "Its a good thing you wanted a vasectomy, because I had no choice anyway. Your spermadic cords were fused together and I couldn't separate them during the hernia repair so I had to sever them."

    Further he said, "I don't know what the last doctor did, but it definitely wasn't a hernia repair. You're all a mess in there and there were no existing sutures or scar tissue on the inguinal ring."

    A year later I had another hernia, by the way.

    I have an online friend that is intersex and was describing the removal of anomalous tissue from her abdominal area during some surgical procedure. That was the first time my conversation with the doctor actually clicked.

    Based on the comment of "mess in there" and "not a hernia repair" coupled with the inguinal hernia symptoms I figure PMDS. Based on the comments about fused spermadic cords and and one undescended testicle, I'm fairly certain that could have been transverse testicular ectopia.

    While I have never considered myself intersex, on transsexual, I now do.