Saturday, January 29, 2011

Mullerian Tissue

I was wondering if Dr. Suporn has encountered residual Mullerian tissue in any of his SRS patients and what his policy might be toward that tissue. I am not sure if I have any residual tissue, but I have noticed with my change to a more cyclic estrogen dose using intra-muscular injections that I do get approximately monthly groin cramps. I am also able to probe what appears to be a 3 inch cavity where the left inguinal canal cavity resides, which is about an inch wide and admits my index finger. I get sympathy pains just thinking about it. It's obviously the location where my left gonad goes when it vanishes for a time (sometimes quite painfully).

I have finally received my passport, marked in the female gender; but the US State Department still has my original letter of SRS recommendation from my therapist. They did return my letter from my endocrinologist, however. Hopefully, they'll return the letter to me and I'll be able to bring both letters with me.

According to Dr. Suporn's office manager:

Mullerian tissue is typically associated with the presence of a uterus – which is present in a genetic woman, but not in a normal non-genetic woman. It is rarely present in a non-genetic woman, other than in specific intersex conditions or pseudohermaphroditism, Since such an eventuality is a rarity, there is no policy per se, and if it should arise as an issue, he would deal with it on a case-by-case basis. Unless you have specifically been diagnosed with this condition, it is not likely to exist.

I appreciate knowing that Dr. Suporn deals with this issues like this on a case-by-case basis instead of blindly removing the tissue.

Deborah is someone I met in here in Utah who visited Thailand some years back with someone who went for SRS. Deborah has been running a support group here for years. Last night she took me to my first meeting with Intersex Society of Utah.

I was halfway looking forward to the intersex support group meeting and halfway not. This may be difficult to understand, but while I have accepted my potentially extremely rare intersex condition on an intellectual level, I'm still trying to come to own it emotionally. I'm not sure taking it to that plane will make any difference. My instincts have been trying to tell me that it will make me less human, that everything I have previously come to know about myself is filled with lies from doctors about being normal.

It left me not knowing how to think. Maybe I was afraid it will make me feel pitied, or treated differently. This strange feeling is a force within myself I need to content with. Not to mention, most doctors I deal with would never believe I have PMDS, if I truly have it. Somehow, I was finding comfort in the uncertainty, like my first college essays, where I was afraid to make a stand on a point and be wrong. I took refuge in the words "probably" and the gender neutral "they", resulting in the professors docking points every time I used one of them.

I guess you could say I grew up being afraid to be wrong, to waste everyone's time. And sometimes I'm afraid to be right with no rational reason.

The letter I have from my endocrinologist is also an original endorsement for SRS, that she sent when I was getting documents ready for my passport application. I got that one back. I'm hoping the State Department didn't lose or insists on holding on to the original of the letter I scanned and faxed to Dr. Suporn's office. I am hoping I can bring it with me, too.

I know the likelihood of diagnosed PMDS is incredibly low, but despite doctors' blessings, I am not normal. I have not been normal for my whole life. In my original fact sheet to the doctor, I wrote of a retractile, smaller testicle that rises high in the groin quite periodically. Last year, I had to see a doctor because one of the times it came down I was in severe scrotal pain for about a  week. It had gone painfully high and apparently caused an intestinal blockage. It seemed to me at the time that there was something wrong with my physiology to allow my "testicle" to rise that high. I spoke to my mother about it, and she said that she had taken me when I was about 9 to see the doctor for what she thought was appendicitis. The doctor told her that I had an undescended testicle and that if it dropped on it's own, I would be fine. There are also times during it's ascent that are very painful.

I decided to do a little research online to understand my own anatomy, how this could happen. I came across papers on Pre-Mullerian Duct Syndrome, the incidence of which is hard to measure because of the pseudohermaphroditic qualities. The condition was only diagnosed when typically removing a cancerous testicle. In practically all, if not all, cases, the patient had a history of cryptorchidism. Typically, the prostate was also small, like my own; the testosterone count was minimal, like my own; and fertility was low. The conclusion of the paper was that the majority of PMDS cases quite likely go undetected. However, I have found that the procedure for treating cryptorchidism involves removing any Mullerian tissue that exists. So maybe the condition is not quite as rare as some believe.

It's considered an autosomal recessive condition, which requires each parent to donate the gene. My father was born with bilaterally undescended testes. The doctors acted to save both, but one still shriveled up and died. I share a slow adolescence with my mother, who when taken to the doctor at 12 because she did not have her first menarche was told she produced too many hormones. She claims it's a Swedish thing. In my pictures at 10, I looked like my father at 8. At 16, I looked 12 and I hated it. Now at 45, people insist I'm about 37, and I like the slow aging so much better now.  I won't even go into detail how long it took for male pattern hair or muscle tissue to appear. Let's just say I was far behind my peers. 

Throw in the fact that a 3-inch "cavity" where my left inguinal canal is supposed to be is cramping 2 1/2 weeks since the last episode and this has been occurring since I switched to injectible estrogen; and given the fact that I have transitioned on a menopausal dose of estrogen (1 mg daily) over the last three years; and I have to accept that something's going on down there; and PMDS is the only explanation I can find (that just threw my memory back to Karen Carpenter's "On Top of the World").

My main concern is that if my suspicions are true, then it's female, it's alive and it's mine; and I want to keep it if it's viable.

At the Intersex Society of Utah meeting last night, after presenting just my symptoms, the facilitator told me that I definitely sound intersex and that it is the right group for me. The other facilitator, Dr. Mark Malan, wants to meet me as soon as possible, after hearing only some of this information second hand. I also met two people at the meeting who have something that sounds very similar. I'm planning on meeting Dr. Malan next week.

Hugs and God Bless,


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