Severe and debilitating period pain is not normal in any circumstance, but there are some who suffer from painful periods because of an underlying condition. When your painful periods are caused by another condition inside or outside the uterus, it is classified as secondary period pain (“secondary dysmenorrhea”). Adenomyosis falls under this category.
Some people call adenomyosis the evil twin sister of endometriosis. While there are similarities, the two conditions are different.
Endometriosis occurs when tissue that is similar to the endometrial tissue (the tissue that lines your uterus) grows outside of the uterus. Most commonly, it is found inside your ovaries, fallopian tubes, and the tissue lining your pelvis. However, it can be found in other parts of the body too. Endometriosis causes fertility problems, pelvic pain, period pain, pain with bowel movements and urination, etc.
Adenomyosis occurs when the endometrial tissue that is supposed to line the uterus grows into the muscular walls of the uterus. Unlike endometriosis, adenomyosis does not grow outside of the uterus. Adenomyosis causes heavy bleeding, painful periods, an enlarged uterus, fertility problems, etc. .
Contrary to the idea that adenomyosis typically occurs in older women, this condition is present in younger women and girls.
Dr. Karli Goldstein, an endometriosis specialist, told TODAY.com that while this disease was thought to affect women in their 40s who had multiple children, “We’re actually seeing earlier cases of adenomyosis without having children. We’re seeing it even in teens and 20s and 30s in women or patients that have really painful cycles."
Unfortunately it takes a long time to get a diagnosis, but a young girl or woman could be experiencing adenomyosis and not even know it.
Take Jess for example. According to i, an independent news brand in the UK, 27 year old Jess has begun “undergoing investigations for adenomyosis”. She had symptoms when she was a young teenager, but was dismissed by doctors who told her her pain was normal.
“It’s just quite disheartening and dismissive and feels a bit hopeless when you think it’s just the pain that you have to live with,” she shared.
Another woman named Marie said she dealt with long and heavy periods since she was 16, but was told by medical professionals to lose weight to deal with her symptoms. It wasn’t until her 30’s that she was finally diagnosed with adenomyosis.
It is difficult to know how many women actually experience adenomyosis because it is likely underdiagnosed. A hysterectomy is needed to actually confirm that you have adenomyosis, and understandably not everyone wants to undergo such a serious surgery. It also seems that it is underdiagnosed because many doctors do not discuss these conditions with their patients, and instead write off their pain as normal. Many years go by before the individual gets a proper diagnosis.
Women with painful periods need the proper treatment, and while situations may be complex, it shouldn’t take years or decades to receive a proper diagnosis. No one should be told that severe period pain is normal, or that they just need to lose weight. Their situation should be looked into thoroughly. In my experience, the goal when you go to the doctor’s office is to be offered a quick solution, leaving you to take care of the rest. That looks like not having a clear plan and not actually being educated on what your condition is. You’re not informed on what it practically looks like to manage your pain. As a result, there’s some trial and error as individuals try to figure out how to take care of their body.
Healthcare systems are complex. Doctor’s aren’t health coaches, and they don’t need to be. However, when you walk out of the doctor’s office there should be a clear understanding of what’s causing your pain and what you need to do to manage it, as well as some type of follow up to see if that plan is actually working. If the doctor doesn’t know what’s going on, the patient should be fully aware that the doctor doesn’t know and that there will need to be more appointments and tests to figure it out.
My suggestion to anyone suffering from severe period pain is to educate yourself, find a doctor that does not dismiss your pain, ask questions and seek out any additional help you need (counselors, nutritionists, health coaches, etc.).
You are not alone, and it’s not all in your head. Continue to educate yourself, ask questions, and don’t lose hope.
Disclaimer: Amber’s Care should not replace medical advice. If you have questions about the following statements, please consult a doctor or a medical professional.