Research states that multiple sclerosis (MS) has no links to infertility. However, your healthcare team will need to monitor your illness as the pregnancy progresses.
For those living with MS who are experiencing fertility issues, in-vitro fertilization (IVF) could be an option. On this topic, we introduce Priya*, invited and interviewed by long-term Life Effects contributor Trishna Bharadia. Priya had lived with multiple sclerosis for several years when she opted to undergo IVF after being diagnosed with primary infertility.
Priya shares her seven top tips for enduring the emotional and physical roller coaster of IVF with a chronic illness. She hopes to bring comfort by sharing her experience with those facing similar challenges.
(*Names have been changed for privacy reasons)
For some, starting a family can be a complex decision at the best of times.
When you add multiple sclerosis (MS) to the mix, that decision can become even more complicated. Then, when you consider primary infertility as well (when pregnancy has never been achieved by the person before), the decision can become overwhelming.
These are the circumstances that Priya faced at age 37. She was offered the option of IVF. What followed was a two-year physical and emotional rollercoaster. Happily, it concluded with the birth of her daughter in 2019.
Priya was diagnosed with MS in 2011. At the time, she and her partner were already considering starting a family. Her MS diagnosis threw everything into a tailspin. They decided to postpone the decision as she began disease-modifying therapies. At that time, the recommendation was not to be on disease-modifying therapies if you wanted to have a baby.
Time passed. Priya decided she was ready for a family as she continued her MS treatment. But, despite trying, something wasn't right. Following tests, Priya was diagnosed with primary infertility.
"Navigating the IVF journey alongside MS has been tough," says Priya. "I want to help others in a similar situation so they can benefit from some of my experience. Especially as I've found very little information available for people like me."
Here are Priya’s top tips for someone with MS who is going through IVF:
1. Talk to your healthcare team about MS medication and treatment
You may be unable to take some MS medications when trying for a baby or during your pregnancy.
It is essential to speak to your doctor about your circumstances before trying for a baby and throughout the entire pregnancy process. Take a list of all your medications, and ask your doctors how pregnancy may change your MS treatment plan.
Remember that IVF can take months or even years, so you may have to discuss a long-term plan with your healthcare team.
2. Practice good communication between you and your partner
As with an MS diagnosis, IVF can be very isolating for some people. Honest and open communication between you and your partner can really help.
IVF can be very emotional, not just because of the hormone treatments but also because of the bigger picture you're trying to achieve.
It's natural to feel irritable, frustrated, and depressed during this time. It’s easy to take things out on the person closest to you.
The journey can be made easier if you're both honest about what your feelings and expectations are so that you can address them together. Seeking outside help, for example, from your doctor, a therapist, or a counsellor can also help.
3. Build a good support network
Priya found online support groups where people were sharing similar experiences helpful. This was especially useful because there is a lack of information specifically about MS and IVF. She could share her concerns, hopes, and fears and learn from other people's experiences. Support from close family and friends also helped, particularly if she needed to vent or offload.
IVF can physically impact your body, so practical help from family and friends is also helpful.
4. Make sure that your healthcare teams are talking to each other
It's possible that your fertility and neurology teams will not automatically consult one another without being asked. So, you may have to foster that relationship yourself.
However, joined-up or shared care is essential. Make sure that both (or all) teams are aware of your personal circumstances as you progress through your fertility and MS journey.
Get copies of your clinic letters and test results (in case the hospitals can't share records). Don't be afraid to ask your doctors to communicate with each other.
5. Be prepared for an emotional rollercoaster
People can tell you what the emotional journey might be like, but everyone's journey is individual. You might go from feeling high to low and back again within hours.
Meditation, practising mindfulness, exercise, and doing things you enjoy can help regulate intense emotions.
It's easy for IVF to become all-consuming and to forget about daily living. Make time for the things that make you happy.
6. Expect fatigue to be the “norm” for a while - it’s not selfish to say no
There is a lot involved in the IVF process. You'll find your hands full with time-consuming and energy-draining tests, appointments and procedures.
If you have MS fatigue, that may not stop. Medications and hormone treatments can also worsen fatigue, so it's not uncommon to feel exhausted.
Learn about sleep hygiene, nutrition, and relaxation techniques to help your health and well-being.
At first, Priya felt guilty after turning down the invitations and requests that were proving too much for her physically. Letting go of guilt by clearly defining priorities and boundaries helped her in the overall process.
7. Get ready to dig deep to find accurate information
Priya has a professional background in research, and even she found it difficult to find specific information about MS and IVF!
Look online for fertility support groups and charities in your particular country. Ask your medical team if they know the latest research, studies and information. Only go to trusted sources - and if you need more clarification, check with your nurse or doctors.
Many of your peers will give you advice. While they mean well, try to make your decisions based on information from professionals or people who have actually been through the process.
IVF works for many people, but not everybody. Having positive but realistic expectations is essential. Finally, remember IVF is only part of the journey, whether successful or not.
Priya had many moments when she wanted to give up. She was lucky enough that she fell pregnant with what she decided would be her final attempt at IVF.
Please remember that IVF is not available or appropriate for everyone or every situation. However, if you are currently going through IVF, please consult regularly with your doctor, hospital, and healthcare team to get through the process in the best way possible.
NPS-IE-NP-00635 February 2023