Hormones in CF Chapter

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Thank you for taking this poll! The answers will help us write the hormone chapter of a resource guide about sexual and reproductive health for women with CF and their providers. We are asking for email addresses not to track answers but to prevent rogue actors from participating in this poll.

Email *

Name of CF clinic (We are asking this to keep your name private, if you so choose)

What questions do you want your provider to ask you? Please select up to 4.

Do you have a cycle?

Do you track your cycle? If so, where are you in it? Every visit by PFT person.

At puberty, talk to us about impact of puberty, hormones and CFRD.

Have you had your thyroid checked? Yearly

If you are tracking periods, do you notice a change in your CF symptoms? Yearly

ENT to ask questions about hormones. Every visit.

What hormone issues run in your family? (Genetic predisposition to certain conditions) Yearly

Do you feel you need to see an OB/GYN or endocrinologist who can answer your questions? Yearly

Schedule regular labs to check these issues

Are you aware of how your hormones may impact your life? Identify that there are shifts in hormones over the lifespan. Patients may not know of the correlation.

Do you notice patterns in your symptoms during the month?

What questions are important for patients to ask providers? Please select your top 3.

Do you have expertise in thinking through CF and hormonal aspects of that?

Tell if you notice hemoptysis during your period.

Tell them if you notice an exacerbation cyclically.

What kind of specialist do I see for this?

Do you have a referral to endocrinologist who knows CFRD?

Do you know if these birth control pill will impact my CF?

Option 7

What peer to peer advice have you found helpful or do you have peer advice to share?

If you have questions about your hormones, see a hormonal specialist

Talk to your team about a continuous glucose monitor

Track your periods and symptoms and bring the report to your doctor

Find an online group of women with CF you can talk to (like CFReSHC!)

If you have gone through the route of checking with your docs and you are still struggling, please seek out a psychologist.

Listen to your body and what you need.

Get familiar with how hormone fluctuations can affect the non-CF population and use that to compare to your symptoms.

Figure out when you need more rest.

Be your own advocate and keep asking questions and seeking different providers.

Do trial and error with your birth control options to get the best outcomes/results for you.

Do you think your hormones are an important part of your CF Care?

Yes

I'm not sure

Clear selection

Do you notice a correlation between your period and CF symptoms?

Yes

I haven't thought of it

I did before my periods stopped (from menopause, birth control etc.)

I did not before my periods stopped (from menopause, birth control etc.)

Clear selection

Do you experience hemoptysis during your menstrual cycle?

Yes

I did before my periods stopped

I did not before my periods stopped

Clear selection

Do you experience emotional swings before, during or after your cycle?

Before

During

After

Not at all

I did before my periods stopped

I did not before my periods stopped

Clear selection

Do you feel like your provider pays attention to your concerns about your hormones?

Yes

Other:

Clear selection

Do you use a period tracker app to track symptoms? If so which on?

Yes

Other:

Clear selection

Have your hormones and/or menstrual cycle changed on modulators?

Do you believe you have underlying hormonal issues that are not addressed because they are overshadowed by your CF?

Yes

Other:

Clear selection

Please write in any additional resources you have found helpful on this topic.

Do you want to write a blog post on this topic? (It may be anonymous) If yes, please leave your name and email so the team can follow up

Please leave your name and email here if you want to be added to our mailing list for updates on future meetings.

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