Porphyrias are a group of genetic disorders characterized by high levels of porphyrins in the blood and tissues, because of a failure to change porphyrins and porphyrin precursors into heme. There are several types of porphyria, each with different symptoms and disease progression.
Acute porphyria, which affects the nervous system, can cause severe attacks that may require hospitalization and can be life-threatening if untreated. In women, hormonal contraceptives and menstruation can cause porphyria attacks.
What are hormonal contraceptives?
Natural versions of these hormones regulate ovulation and the menstrual cycle. In the early stages of the cycle, the levels of estrogen start to rise and trigger the ovaries to release a new egg, which a sperm cell can fertilize if introduced at the right time.
Levels of progesterone then start to rise, and prepare the uterus for the potential implantation of the fertilized egg. If a sperm does not fertilize the egg, the inner lining of the uterus starts to shed and menstruation occurs.
The artificial hormones in hormonal contraceptives (especially progesterone) “trick” the body into thinking you are already pregnant, so there is no need to release an egg.
Why are they linked to porphyria attacks?
The estrogen and progesterone that the body produces normally can also stimulate the enzymes that produce porphyrins. The sudden increase in porphyrins can cause an acute porphyria attack.
Many women with porphyria experience attacks either in the middle of their menstrual cycle (when there is a surge of estrogen surrounding ovulation) or a few days before the beginning of menstruation (when progesterone levels are high). The artificial estrogen and progesterone in hormonal contraceptives can have the same effect.
Considerations with hormonal contraceptives
If you have porphyria, your doctor will talk with you about whether you will be able to try hormonal contraceptives. Some women with inherited acute porphyria have no problems taking these contraceptives every month, while others have serious attacks. If you have had a severe attack in the past, it is unlikely that your doctor will prescribe a hormonal contraceptive.
If you want to try taking such birth control methods, you should discuss with your doctor the signs of an acute attack, and have a plan for treatment. You should generally avoid long-acting hormonal contraceptives (like Depo-Provera) because if there is a severe response, it’s difficult to counteract the treatment. Likewise, injectable and implanted hormonal preparations are advised against, as they cannot be removed.
Small intra-uterine devices (like Mirena) release progesterone that acts locally, so that very little of the hormone reaches the bloodstream. This makes this type of device less likely to cause an acute porphyria attack.
Last updated: Sept. 1, 2020
Porphyria News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.
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