Please note, this is my personal experience of living with Ehlers Danlos Syndrome, the treatments and path to diagnosis and should therefore not be taken as medical advice. I am aware that some complaints are only indirect EDS symptoms but these also contribute to the overall picture and my experience with the condition, EDS.
Quotes and links are freely available information from the internet and not verified. These, and my experiences, are not intended as an alternative to medical advice.
“ The impact of EDS on fertility depends on the type and severity of the disease. Some patients may have difficulty conceiving while others may have no issues. According to a survey posted on the Ehlers-Danlos National Foundation website, the incidence of infertility was reported to be 43.3% among the 1,352 responders.
Assisted reproduction through in vitro fertilization with pre-implantation genetic testing may be an option for EDS patients with fertility issues. However, it should only be considered after a detailed discussion with a genetic counselor, gynecologist, and healthcare team about the likelihood of successful implantation, full-term pregnancy, and any potential complications during pregnancy and childbirth.”
https://ehlersdanlosnews.com/fertility-and-pregnancy-in-eds/
Male fertility issues are often overlooked when talking about chronic illnesses and their symptoms. This while being unintentionally childless affects one’s life, future prospect, and that of the partner massively. The pain it causes is indescribable and the feeling of powerlessness can cause lifelong depression.
When it came clear pregnancy was troublesome for me and my wife, the first thing that was tested was the hormonal balance of my wife. This was not optimal and with additional hormone drugs we had to try again. Back then i didn’t know about my EDS, nor varicocele and my wife felt the pressure of our future as a family on her shoulders. The hormones had a big impact on her wellbeing and self image. No medical professional looked at me at that time.
Only when ICSI and IVF was the only option left was my sperm tested. The amount of sperm I released was very little and it seemed there were hardly any usable sperm cells. For ICSI and IVF it was good enough though but the chance of conceiving the natural way was very little. Only then, several years into fertility treatments did we know it was my sperm that caused this.
Varicocele was still not mentioned as a possible cause, as if the cause for male infertility did not matter because there is hardly anything that can be done about it in a short term anyway. However as a couple it does matter. Not to blame anyone but to be sure to have done everything possible to get the outcome we wanted, and that was a child. After years we finally ended our fertility journey and chose the adoption route.
Living with Ehlers Danlos Syndrome 