Overcoming Infertility @ long-term side effects of HRT
An intersex person's gender-affirming memo to parents with transgender youth
Infertility
Hypogonadotropic hypogonadism part 2
Hypogonadism also leads to infertility (Fraietta et al., 2013). You may already know that. You may not know how difficult it is for an individual on PB (or any other cause of hypogonadism) to have children. The testicles develop in response to the follicle-stimulating hormone (FSH) and luteinizing hormone (LH), secreted by the pituitary gland. Together, called gonadotropins, they stimulate the testicles to release testosterone and to create sperm. The pituitary, in turn, is controlled by the hypothalamus, another gland in the brain. In my case, the hypothalamus did not produce the GnRH, which triggers the pituitary to produce gonadotrophins (Sykiotis et al., 2010). PB through continuous stimulation, GnRHa inhibits the pulsatile secretion of gonadotropin, resulting in hormonal suppression, and the cessation of pubertal development and infertility.
I was 35 when I wanted to have children. I also did not want to be the man without visible testicles. Women never mentioned it, probably assuming I had cancer and had my testicles removed. Without them, I did not feel entirely masculine. To bolster my self-confidence and my masculinity, I thought about getting testicular implants. However, it was a misunderstanding as I had testicles. They were just never stimulated to produce sperms. Fortunately, I soon realized alternatives existed—quick GnRH replacement or an HCG fertility treatment.
Using GnRH would only take four months before I would hopefully be able to produce sperm. There was a catch, however. It required wearing a portable pump on my abdomen, which would release GnRH in spurts. I was not too keen on the idea—I did not want to wear a medical device every day for four months! Furthermore, this treatment only existed at certain hospitals and was very expensive.
As a result, my endocrinologist started me on HCG. He told me, “If HCG cannot stimulate your testicles to produce androgens, you cannot have children.” Initially, I was surprised to use the "pregnancy hormone" during my treatment, but I soon learned that HCG is very similar to LH. HCG supplementation triggers the simultaneous development of androgens and sperm. What is HCG? Think of pregnancy tests. Pregnancy tests work by looking for a hormone called human chorionic gonadotropin in your urine (pee) (HCG). This hormone is produced exclusively during pregnancy in women. When a fertilized egg attaches to the lining of your uterus—when pregnancy begins—HCG is released. So instead of taking androgen, I started taking HCG. I needed three bottles, each costing $299, totaling about $900 per month. It was still very expensive, and it took two years for me to see the results. That wasn't all though, HCG only replaced LH; I still needed FSH to become fertile. FSH triggers Sertoli cells within the testicles to provide a conducive medium for sperm production (Casarini et al., 2020). Therefore, in addition to HCG, I also received Follistim (Synthetic FSH). With the two hormones combined, I had to pay a whopping $4,000 monthly, with not a cent coming from health insurance since they still do not cover fertility treatment. It was very uncomfortable at first.
At 35, I was going through another part of puberty. My growing testicles meant I could not sit on a bicycle or squeeze myself in-between passengers on a bus ride. However, as they grew, their effect on my primary sexual characteristics and my masculinity and confidence were immediate. During the treatment, I had to visit the endocrinologist several times for hormonal and sperm tests. All these tests were very embarrassing, but I got used to them. The sperm concentration would ultimately decide how I could have children.
Infertility options are expensive and invasive
First, the old-fashioned way, up to 50% to 80% of men with my condition have a good enough response to treatment to try it.
Second, intrauterine insemination involved artificially washing and processing the sperm and then injecting them directly into the uterus of a woman receiving pro-ovulatory medication.
Third, intra-cytoplasmic sperm injection (ICSI), a treatment costing $12,400 that involved extracting eggs from a woman on preovulatory medication and injecting them with sperm in a petri dish with the resulting zygote implanted in a uterus.
Unfortunately, I did not produce enough sperm to be a suitable candidate for any of the mainstream options available.
The only option left was microscopic testicular sperm extraction (micro-TESE) which involved surgically extracting the most viable sperm directly from my testes. Alas, I could not afford it. This procedure can cost upward of $90,000.
Chronic conditions caused by hypogonadism and HRT replacement therapies
Another long-term effect attributed to HRT is the early onset of benign prostatic hyperplasia (BPH), a condition characterized by prostate gland enlargement seen in older men. The problems with my prostate started around the age of 30 and were directly caused by the highs and lows of injecting androgen or using gels unregulated by the endocrine system. Some less common symptoms of BPH include the inability to urinate and urinary tract infection. However, my symptoms were so extreme that I had to undergo self-catheterization for two years because of a completely obstructed bladder neck leading to over 30 bladder infections. To date, I have had three prostate operations due to an earlier onset of BPH. After months of research, I finally found a surgeon capable of performing prostate surgery without the risk of severe sexual dysfunction that often happens due to these operations.
Sjogren's syndrome
I was recently diagnosed with Sjogren's syndrome at around 40 but have symptoms starting around age 30. SS is an autoimmune condition in which the body attacks itself. Sjogren’s syndrome, unlike its cousin lupus, attacks only salivating glands—such as tear ducts and salivating glands in the mouth. As well as causing skin problems and gastrointestinal problems, SS can also cause serious complications, including lymphoma of the lymph nodes in the neck. Lupus is closely related to SLE, and these two conditions are often seen together. 98% of Sjogren's patients are females in their 60s. It is thought to do with hormone imbalances as a child. It is unusual in males to develop Sjogren’s syndrome or even other forms of rheumatoid arthritis (RA).
When I was 42 it completely disabled me for six months after a severe flare-up. I woke up with brain fog and unable to concentrate. My entire right leg was swollen in spots and my knee was in severe pain and swollen as well. I could not think very clearly, and I suffered from extreme fatigue with severe dry eyes. This required surgery on my knee to remove soft tissue that became inflamed including injections of steroids. Because SS affects soft tissue the joints are left alone but the soft cartilage around the joints becomes inflamed. After diagnosis, I was put on a methotrexate mixture which costs around $7,000 per dose—otherwise, I would have to endure more surgeries because of the damage done by my own immune system.
I suffer from joint pain, morning stiffness, and extreme fatigue, with my eyes dry to the point requiring regular lubrication (it feels like someone is throwing sand and glass into my eyes).
Sjogren's syndrome may be caused by a deficiency of sex hormones such as estrogen. In comparison to sicca controls, women with primary SS have lower estrogen exposure and CMC. Increased estrogen exposure was associated with a decreased risk of developing primary SS. (McCoy et al., 2019).
Autoimmune conditions such as Sjogren's syndrome are not uncommon in the conditions that cause hypogonadism in the population. Hypogonadism, irrespective of PB administration, is associated with a high frequency of autoimmune diseases, including RA (Jimenez-Balderas et al., 2001, Rochira, 2017).
Summary
I was identified at a young age with the condition idiopathic hypogonadotropic hypogonadism, which affects the sex hormones in 1 in every 10,000 births (0.02%); if I had not done so, I would have remained prepubescent for the remainder of my life. Puberty is a critical time for human development and any type of derivation of development—whether induced medically or caused by an intersex medical condition—can have long-term ramifications. Infertility is an emotional roller coaster as well as an extremely costly one. I did not understand any of these ramifications when I was going through my treatment. My treatment was medically necessary, and I would’ve been better off if I understood exactly what the future ramifications would be rather than finding out in the future.
I am a natural example of how an abnormally functioning or non-autonomous pituitary could have serious short and long-term consequences to your body. It is possible that my afflictions just co-existed with my hypogonadism. However, medical literature and data suggest otherwise. I had no choice but to use standard HRT since my pituitary, which sits on top of the endocrine system, was dysfunctional. Adolescent brain structures are affected by pubertal development in four specific parts of the brain: the amygdala, the hippocampus, and the corpus striatum. A child essentially is frozen in time without the appropriate hormones to stimulate the cognitive capacity such as decision-making and understanding abstract concepts such as gender. I hope my story help to clarify the difficulties and ramifications of having an intersex condition that causes a disruption in the natural development of a developing child.
References
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To write this article, I hired a development editor who specializes in fertility and a professional medical document editor. This was a labor of love for me, and I put my own money into it. If you would like to contribute to help defer the cost.
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my next article “Puberty Blockers Psychosocial Effects on Adolescents Exhibiting Gender Dysphoria” is still in the works and I hope to complete it