Birth Control Pill

[Peanut75]

My daughter suffers from significant cramping and bleeding during her period.
She’s already suffered from a ruptured ovarian cyst a few months back.
A few different doctors have suggested a progesterone only pill or a patch, but I feel they don’t have a lot of experience with IBD.
I’ve read it’s recommended a low dose hormone pill is more suitable due to crohns and blood clots.
Anyone out there have any suggestions or recommendations?

 

[Maya142]

My kiddo was put on birth control because of horrible cramps in her late teens. She isn't on a low dose one - she initially tried a 3 month version (so she only got 4 periods a year) called Jolessa but that didn't really help much with the cramps. She was then put on Loestrin Fe (which helped a lot) and then switched to Trilegest Fe because she was having breakthrough bleeding. She's still on that and she says it makes a huge difference. I believe Loestrin has a low dose hormone version. Honestly, it was trial and error finding something that worked.

 

[pdx]

Sorry--don't have suggestions just sympathy. My daughter also has painful cramps and heavy bleeding during her periods, which contributes to her iron deficiency. She also had a large (10cm) ovarian cyst that was removed last summer during her resection, and now has another one growing in the same place. She tried 3 different formulations of birth control pills during high school, but they all made her extremely nauseated to the point of vomiting, so she wasn't able to continue them. She has an appointment with a GI doctor next month to talk about other possible birth control methods, but she's hesitant to try something like shots or implants, because it would be harder or impossible to reverse if they make her sick.

 

[Peanut75]

Thanks for your input. While this journey is a difficult one, I’m glad there are some people out there that understand what we are all going through and we aren’t alone.

 

[Maya142]

@Peanut75 I'm guessing you've tried this, but if not, it might be worth asking her GI what she would recommend. We worked with my daughter's gynecologist (but she was definitely older than your daughter - 18 or 19). There are adolescent gynecologists though at children's hospitals.

@pdx I'm not sure your daughter would be open to this, but one of my nieces also struggled with side effects with birth control pills (nausea, mood swings) but really needed to be on birth control because she had cramps that were so bad that she would throw up and she also had very heavy bleeding. She ended up on the Nuva ring and it really helped her.

M really benefitted from birth control - I had totally forgotten, but she used to get ovarian cysts too (much smaller ones though and none of them ruptured). She really had awful cramps though and heavy bleeding and now that is gone. The bleeding is much lighter and more manageable, she has only mild cramps. Her skin is clear too - she only had mild acne, but it was a nice bonus. She does have chronically high platelets due to inflammation but neither her GI nor her gynecologist are worried about clots.

 

[Peanut75]

@Maya142 - thanks. The GI mentioned low dose pill, said other patients have been successful on Yaz and Lo Loestrin.
the ob gyn suggested Twirla , since it’s a low dose patch, bypasses the gi track and you don’t need to remember taking it every day. Insurance denied it, said we need to try 5 other pills…… I wrote a letter to the insurance company with statistics I found, etc, sited journal articles but they still denied me. The dr never did a peer to peer. During a hospital stay in September, the doctor who did a consult with us suggested a progesterone only pill/ mini pill.

 

[Maya142]

Hmmm wasn't Yaz the one with an increased risk of blood clots? And the FDA changed the labeling to reflect that?

So I asked my daughter( who has a better memory than I do!!) and she says she stopped Loestrin Fe because insurance made her - not because of breakthrough bleeding (apparently that was my older daughter who switched off something else due to breakthrough bleeding). She then went to Tri Legest Fe which is actually the same amount of progesterone and estrogen. She tolerated both well - no side effects at all she says. This is what it contains:

28 Tablets: (Each light pink tablet contains 1 mg norethindrone acetate and 20 mcg ethinyl estradiol; each light yellow tablet contains 1 mg norethindrone acetate and 30 mcg ethinyl estradiol; each light blue tablet contains 1 mg norethindrone acetate and 35 mcg ethinyl estradiol; each brown tablet contains 75 mg ferrous fumarate.)

Lo Loestrin contains 1 mg norethindone acetate and 10 mcg of ethinyl estradiol instead. So they are pretty similar.

For what it's worth, we were told that as long as your IBD is controlled, absorption shouldn't be a huge issue. She has Gastroparesis, and that can significantly impact absorption because your stomach does not empty properly, so many of her meds go through her J tube. But she has her birth control orally and no issues at all (and we'd know if she wasn't absorbing it because she would have breakthrough bleeding).