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XXY Perspectives







This letter was originally posted on the XXY+Adults Support Mailing List, January 31, 2000.


"My husband was diagnosed with KS 8 years ago during a fertility work-up.  Since that time, we've explored all of our options to have a family (most of them expensive).  We heard about a procedure where a testicular biopsy could be performed to search for sperm and if they find any, the doctors could do another procedure called ICSI. Has anyone gone through this process?  My husband is concerned with the pain and long term effects of having this biopsy done . . . not to mention the disappointment if it doesn't go well.
Interested in any thoughts."

Hi -- I'm sorry I was away for the weekend and just waded through the hundreds of emails I received.  I really wanted to answer this one before I got to alot of other stuff though.

My personal take on the subject is

My husband Dan is a 47 XXY non-mosaic diagnosed in 1993 -- it was discovered when we were trying to conceive.  I won't bore you with the details of how we got to Cornell in NYC but suffice it to say that we finally found a doctor/hospital willing to try something called TESE (testicular sperm extraction) in combination with a procedure called ICSI (which is a fancy way of saying they inject the sperm they find into each egg produced by the woman).  But then you sound like you sort of already know what is involved?


Anyway, our second try at this (which made Dan's THIRD biopsy -- the first was for diagnosis and could have been avoided if we hadn't been right on the cusp of new technology) we successfully conceived our biological son, Kevin -- who is a healthy 46 XY.

Since Kevin's birth we have tried three more times (once with a fresh biopsy, twice with frozen tissue from previous biopsies) and are preparing to try again as soon as I get my next period.  So far, we have had no luck, but obviously remain hopeful.  This will probably be our last attempt as we have run out of insurance and spare cash (LOL - who has "spare cash" these days?).

Seriously, what this involves in our case is that Dan is NOT on hrt, but instead does a combination of shots of HCG and pills (called Teslac) which boosts his natural production of testosterone.  The surgery is painful, but has become less so as his doctor has learned to find more sperm using less tissue, meaning smaller incisions and less scarring.  Still, there is no question that sex is out for at least several months as ejaculation is painful post-surgery.   There is also a small drop after each surgery in the amount of testosterone Dan produces as there is less tissue to produce the hormone.  Long-term effects?   This is too new a procedure to determine.  Dan's doctor has said it simply means that in the future Dan will probably need hrt earlier than he might otherwise.  A lot depends on how much your husband is producing naturally...


Yes, this is also VERY expensive.   An ICSI cycle (without the TESE part) at Cornell, including all the medication the woman has to take costs about $15-20,000.   Most insurance carriers will not cover infertility.  We lucked out because we had an old and very vaguely worded policy from Guardian -- we wound up covered for 4 attempts (and as you see, we are up to #6- by the way, this makes a GREAT medical deduction on your income taxes if you can afford to pay this up front).   HMOs generally do not cover anything; major carriers may cover some.   Dan's surgeries (which are generally not coded for infertility -- our doctor has been very cadgey and listed stuff like "tumors" or " cysts" ) IS covered under our hospitalization plan (BC/BS), but if you're not covered that averages about another $5000 plus costs of medications.

More importantly there are tremendous emotional costs.  Infertility is often compared to a roller coaster.  You get all excited and UP during the beginning of a cycle, and if it doesn't result in a pregnancy you come crashing DOWN hard!  Depression, anxiety, financial worries, all take a toll on the marriage.  I strongly urge you to consider both contacting groups like AIA (american institute of infertility) or RESOLVE for support groups and information, as well as finding a qualified couples therapist who can help you cope with the strain.

Having said all that, I wouldn't trade a single moment of all this for the joy of having my son.  It was SO important to both of us that he was our biological baby.  We had tried donor insemination for awhile while waiting for Cornell (a long story) and I hated it -- I felt violated.  Now that I've experienced a pregnancy we are discussing whether to go back to donor or move on to adoption if this cycle doesn't work out -- and obviously I am leaning towards adoption.   (Incidentally the costs in DI are MUCH smaller although generally still not covered by insurance.)


I would be happy to discuss this with you over the phone or in private emails whenever you wish.  Try not to feel overwhelmed, but look at what your ultimate goals are -- whether biological connections are important, how far you are willing to go in search of a baby which may never come, etc.

Wendy



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This page first created: May 24, 1999
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