Turner Syndrome Foundation
This post is based on the recent webinar by Dr. Oktay on “Fertility Preservation in Girls with Turner Syndrome.” It briefly highlights the importance of early diagnoses and treatment as well as the types of fertility preservation treatments individuals with TS can pursue.
Note: The information in this post is educational. It does not replace medical advice from your doctor(s). Always consult with a medical professional regarding any specific health concerns.
What are some key terms I need to know to understand fertility preservation treatments?
- Ovary -This is an organ that helps females produce eggs.
- Tissue -This is a group of similar cells that act together to perform a specific function in the body.
- Puberty -This is the time when the child’s body begins to develop and change as they become an adult. It usually happens between the age of 10-14 in girls.
- Menopause -This is the time a woman’s life when her period stops happening.
- AMH test (or Anti-Mullerian Hormone test) -This is a specific hormone level test that allows fertility doctors to assess a woman’s egg count.
- In-vitro – This means “performed outside living organism in test tube, culture dish, or elsewhere”.
- Fertility preservation- This is a type of treatment process that helps you save eggs or sperm so that you can use them to have biological children later on.
- In-vitro fertility preservation (IVF)-This is the process of taking out a female’s eggs, then putting it into a petri dish with someone’s sperm-either a donor or their partner-fertilizing the egg to become an embryo. The uterus then receives the injected, newly-made embryos.
- HPO axis-The hypothalamus, pituitary gland, and ovaries work together to regulate the reproductive system in women and girls.
Why are fertility preservation treatments important for those with Turner Syndrome?
Women with Turner Syndrome (TS) are at risk for early menopause and infertility. One of the main reasons is that since TS is often diagnosed late, it is hard for them to benefit from fertility preservation options.
Additionally, TS causes some other pregnancy complications, including:
- High spontaneous pregnancy loss (29-66 %)
- High donor egg pregnancy loss rate (40%)
- Women with TS have a high maternal mortality risk (1-2%) due to having an increased risk of body tissue defects.
- This causes only 38% of those with TS to have a complication free pregnancy process.
Due to medical challenges related to TS, those with TS who want to have children often have a gestational carrier, or someone else who can get pregnant normally, take their egg and have a baby for them.
Some health challenges related to TS that create pregnancy challenges include:
- Thyroid dysfunction
- Obesity
- Diabetes
- Left side ongenital heart disease
- Low birth weight
What are the types of fertility preservation treatments?
What is egg freezing?
Egg freezing is when a doctor takes out eggs from the ovaries’ follicles in the vagina using a needle with a suction cup on it, and then these eggs are frozen at quite cold temperatures (below zero, to be exact).
If you or a loved one wants to do egg freezing (source- webinar and Mayo Clinic):
- Firstly, when you or a loved one chooses to do egg freezing, meet with your doctor to learn how egg freezing works and how it will effect the body. This is especially important if it’s your young loved one. Their HPO axis not fully grown, extra care for both this treatment and estrogen treatment is strongly recommended.
- Then, start having you or a loved one take a fertility medication, which is injected into your skin (similar to growth hormone therapy) for 2 weeks. This will be enough time to the onset of the period for ovarian stimulation.
- As you or your loved one take the medication, have the doctor periodically check the hormone levels and vagina with an ultrasound to make sure they know when around the eggs would be ready for collection.
- After this, wait for the doctor to tell you when you or your loved one’s eggs should be collected.
- Once the doctor tells you and/or your loved one and the day arrives, prepare you or your loved one to be sedated for the treatment.
- Make sure that following the treatment, you or your loved one does not have unprotected sex for a few weeks. Furthermore, let the doctor know if you or your loved one experiences fever, rapid weight gain, or other symptoms.
- Want to use the frozen eggs? Let your doctor know-read more information about how they are injected into your body here.
Dr. Oktay recommends this treatment for:
- Girls who are not in puberty if their AMH levels are not too low
- Women post-puberty who do not have depleted ovaries (or have no eggs)
What is ovarian tissue freezing?
In the ovarian tissue freezing technique for fertility preservation, an ovary is taken out of a female’s body. Then, its eggy tissue is removed, sliced and frozen. It is then, once a patient is ready to become pregnant, thawed and surgically placed back into the ovary. The tissue is either placed in their existing ovary or the original ovary’s spot.
An advantage that this procedure has over egg freezing is that it restores your ovary’s function and, in most cases, fertility, without IVF.
If you or a loved one wants to freeze ovarian tissue, this is what you need to do:
- First, head to a genetic counselor as well as you or your loved one’s doctor. This is so you can get the full explanation of how the procedure works and see if it is right for you or your loved one. Based on recent research, the procedure appears to be safe in children with no complication such as blood loss. It is important to note that evaluation by a specialist important because of the likelihood that it might not benefit based on certain genetic abnormalities in the individual.
- Then, if you or your loved one are okay with it, then plan an appointment for the ovary removal procedure with your doctor. This should take about an hour.
- After the removal procedure, don’t worry-according to our research, there seems to be no side effects to this surgery.
- Are you or your loved one very sure that you or they want to become pregnant? Tell the doctor that you or they want the tissue injected, and set an appointment.
- Once the tissue-injection surgery is finished, prepare for you or your loved one to wait several months for signs of fertility in the ovaries to appear. Some signs include hormone levels rising and eggs developing in the ultrasound.
Dr. Oktay recommends this treatment for:
- Girls who have too low AMH levels to do egg freezing
- Post-pubertal women with no depleted ovaries
When doing this procedure, it is important to be very sure that you want to become pregnant. This is since the time to have a child after the procedure with your ovaries goes very quick.
What are the outcomes of ovarian transplanting?
The pregnancy success rates after the transplantation have increased in recent years overall, and it could as high as 60%. However, there is not enough data for how this affects those with TS.
Doctors believe that these if ovarian tissue freezing goes well, there’s a chance for a success.
What is egg donation?
Two types of donor eggs options exist- eggs that you know who they’re from and eggs that are donated anonymously.
This option is more flexible now because donor egg banks are existing and growing.
However, if you or a loved one want to do egg donation, here is what you need to know (source- UCSF Health):
- Let your or your loved one’s doctor know that you/they want to take this treatment. Prepare to take detailed medical testing to see if you need gestational surrogacy for this treatment to work.
- Then, if you find out that the treatment works for you or your loved one, research alongside your or your loved one’s doctor the various potential donors.
- Once you find a donor, make sure that you or your loved one are sure that you want to become pregnant soon. This is so you can synch both of your bodies well enough that your body’s ready to receive the eggs when the donor’s eggs are grown.
- Once the doctor receives the donor’s eggs, they mix the egg with their stored sperm. They then implant the embryo into your or your loved one’s uterus.
Dr. Oktay recommends this treatment for:
- Women post puberty who have depleted ovaries
What is embryo freezing?
According to the National Cancer Institute, embryo freezing starts when the eggs are taken out of a woman’s ovaries by surgery. Then, sperm from a donor or the woman’s partner fertilize them. The eggs, now embryos, are frozen and saved for later. When a woman taking this treatment is ready to be pregnant, the embryos are thawed. Then, doctors implant the embryos back into the uterus. Hopefully, these embryos eventually grow and become babies at birth.
If you or your loved one wants to do embryo freezing, this is what you need to know:
- Firstly, if you want to set an appointment with your doctor or genetic counselor to learn more about embryo freezing, do it. That way, you or your loved one will better understand the procedure going in and see if it is right for you or them.
- If you believe that the procedure works for you or your loved one, set an appointment with your or your loved one’s doctor to start egg removal.
- After the egg removal procedure, prepare to wait for the egg fertilization process.
- Is you or your loved one ready to become pregnant? Let the doctor know, and they will soon set an appointment to place embryo into the body.
- After the treatment, be aware of certain side effects such as bleeding, cramping, bloating, and infection (source: Medical News Today).
Dr. Oktay recommends this treatment for:
- Those who are post puberty who do not have eggs in their ovaries
Furthermore, another way that you or your loved one can have children is adoption, which this article will not go into detail. However, you can learn more about adoption and the adoption process in our free recorded webinar-Adoption 101: From My Experience. Hosted by TSF, it is led by guest speaker Rachel Girratano.
Conclusion
Overall, there are many treatments that can help females with conditions like TS preserve their fertility. We hope this article helped you understand that. Furthermore, we hope this article helped you learn the importance of getting an early fertility evaluation after being diagnosed with TS.
This article was written by Dhruvi Patel, TSF Volunteer Blog Writer.
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