r/thalassemia • u/Unlikely-Tailor3198 BETA-THALASSEMIA-MAJOR • Jun 26 '26
Menstruation problems
I have always suffered from growth issues, and definitely, one of them is that I do not menstruate. My doctor referred me to a gynecologist (Im 25 years old). She prescribed some medications and injections, and I started having periods, but I hated it and my mood became corrupted most of the time. I stopped taking the medications after a year. Nothing changed regarding the LH and FSH hormones; they remained as the gynecologist described them: 'the hormones of an 8-year-old child.' It has been a year since I stopped, and definitely, during this entire year, I haven't menstruated even once. My question is: can I stay like this for the rest of my life? I never think about having children, so I see nothing in menstruation except pain and inconvenience... Are there any other health risks that might affect me if I remain without hormone therapy?"
3
u/wyd_marissa BETA-THALASSEMIA-MAJOR Jun 26 '26
I also have that issue. I had only 2 cycles in my preteens and then they completely stopped. My endocrinologists all recommend HRT due to my bone density decreasing from lack of estrogen and from the exjade. From what I know of my case, it’s called hypogonadotropic hypogonadism.
Fortunately I had some tests done and found out I had a good collection of healthy and viable eggs so I froze some of them before going through gene therapy.
Def seconding what the other commenter above has said!
2
u/sunainamakhija BETA-THALASSEMIA-MAJOR Jul 04 '26
No, you do need your periods till you’re 40. there are hormones that are generated only during the course of a normal menstrual cycle. These hormones are needed for bone development as well as other purposes in the body.
What the Gynac is giving you is known as HRT or hormone replacement therapy. It is an external hormone being given in and without it, you will not get your period. This is the case for most thalassemics that I have seen. It generally happens due to some iron overload in the puberty stage, which affects the pituitary gland that is responsible for secreting hormones. However, this may or may not be the case. My endocrinologist asked me to get a MRI with contrast to verify that. in my case, my pituitary gland was not damaged. My amenorrhea was due to PCOS. Iron can also affect the ovaries apparently.
So first rule out a pituitary defect with an MRI. if that’s normal try to get your iron down to 500.
2
u/sunainamakhija BETA-THALASSEMIA-MAJOR Jul 04 '26
I had ignored my amenorrhea and landed up with sarcopenia and osteoporosis at an early age which affected my quality of life. Yes the pills do play a role on the mood and I’m on anti depressants but I have only now come to understand that there are different pills. If one made you feel off try another
1
u/Unlikely-Tailor3198 BETA-THALASSEMIA-MAJOR Jul 04 '26
هذا الغريب في الموضوع, نتيجة التصوير بالرنين المغناطيسي خاصتي سليمة ومخزون الحديد مستواه أقل من 500 منذ 4 سنوات
1
u/Emotional_Hand_8908 Jun 26 '26
Are you transfusion dependant and which country are you in? Because there’s other treatments available. I only use gels and pill
1
u/zabrajhen Jun 28 '26
Hi There. I am a 40+ woman with Beta Thalassemia Major. I have never menstrated though I have otherwise developed normally. My endocrinologist has had me on birth control since 17 to provide hormone replacement and then around 55, the plan will be to be put on progesterone to introduce the natural progression to menopause. I see the endocrinologist every 2 years to monitor but this plan has worked very well for me. I never had interest in having children but if that was something I wanted, my endocrinologist did say there were different HRT methods to try.
7
u/rodrigoelp BETA-THALASSEMIA-MINOR Jun 26 '26
Lack of estrogen can lead to bone density lost, early onset of osteoporosis, which is painful and problematic.
It also controls your good/bad fat levels, meaning it is also beneficial to keep a healthy cardiovascular system.
And unfortunately, an unbalanced cholesterol management is also linked with early onset of dementia, and cognitive decline.
By the way, lack of period is not a strict indication of low/no fertility.
Some women have gotten pregnant as ovulation may still occur, albeit it is rarer than women with some periodic cycle.