Believe it or not, millions of people go undiagnosed for conditions involving the vagina (middle opening), reproductive organs such as the uterus or ovaries; or the pelvic region overall.
If you feel like you may be one of these people being misdiagnosed or living undiagnosed, you are not alone. There are a ton of cases of people with commonly missed diagnoses. Unfortunately, many people and their complaints of pain or experiences with their body are dismissed, resulting in a lack of accurate diagnosis or diagnosis at all. And, studies have shown that people with uteruses are dismissed by healthcare professionals more often.
Oftentimes, people with vaginas (middle openings) see multiple healthcare providers before getting a proper diagnosis. Because their complaints of pain go ignored, many people wait years and years before even trying to get a diagnosis; some even wait until the pain is unbearable.
This is unacceptable; nobody should be gaslit when experiencing pain.
What to do next when dealing with commonly missed diagnoses?
First, know that you have the power of knowledge and access to educational resources on your side. Remind yourself that you know your own body, and know what pain you are feeling. You will often have to advocate for yourself on your journey for proper diagnosis, but properly being able to name your symptoms is how you can find more success in getting diagnosed.
It’s also important to educate yourself on what commonly missed diagnoses are out there for people with vaginas (middle openings), and the differences between the symptoms.
In this post, we’ll talk about a couple missed diagnoses for people with vaginas (middle openings): Endometriosis, Polycystic Ovary Syndrome, and Pelvic Congestion Syndrome. Let’s break down the current diagnosis stats for each of these:
- Up to 10% of people with uteruses in the United States have Endometriosis (ENDO).
- Up to 12% of people with uteruses are affected by Polycystic Ovary Syndrome (PCOS), one of the most common causes of infertility.
- Up to 15% of people with vaginas are affected by Pelvic Congestion Syndrome (PCS).
Now, let’s discuss each of these commonly missed diagnoses in detail:
This is a painful disorder where tissue similar to the endometrium grows outside of the uterus. When endometriosis also affects the ovaries, cysts can occur. Both of these aspects result in pain, often severe. Unfortunately, there is no cure for Endometriosis, nor is there an exact cause known. However, there are options that can help reduce symptoms and make this condition more manageable overall.
- Dysmenorrhea (painful periods) is a very common symptom
- Problems with fertility
- Excessive bleeding (both during menstruation or between periods)
- Pain during intercourse
- Painful urination or bowel movement (mostly during menstruation)
- Fatigue, diarrhea, constipation, bloating, and nausea during periods.
Polycystic Ovary Syndrome (PCOS)
This condition is where the ovaries produce an abnormally high amount of androgens (sex hormones) than usual. As mentioned before, it is one of the most common causes of infertility in people with uteruses. Similar to ENDO, there is no cure for PCOS, but again, symptoms can be made more manageable.
- Irregular menstruation
- Acne or oily skin
- Excessive hair growth on the body (not the scalp)
- Thinning of hair on the scalp
- Depression and anxiety
- Weight gain
- Higher risk for Type 2 Diabetes (depending on the individual)
Pelvic Congestion Syndrome (PCS)
This is a condition involving the formation of varicose veins below the abdomen within the pelvic region. Sometimes these veins can become “congested.” This is accompanied by pain in the pelvic region. Some types of treatment often suggested involve medical or surgical options, but other treatments such as physical therapy offer some relief too.
- Pain in the pelvic region
- Enlarged veins on the thighs, buttocks, or external genitals.
- Increasing pain over time (especially if standing for long periods), often worse at the end of the day
- Increased pain during intercourse or physical activities
- Increased pain before and during menstruation
- Feeling a sudden need to urinate
Now that you’ve learned about some commonly missed diagnoses for people with vaginas (middle openings), you can better understand why it’s important to properly understand your symptoms. Some conditions may seem similar in terms of symptoms, but require different treatments. This is why it is good to understand how to describe your symptoms to your healthcare provider.
It is also obvious why these conditions shouldn’t go undiagnosed. Nobody should have to deal with severe pain on a day-to-day basis; you don’t want these symptoms to worsen over time. Having a proper diagnosis is how you can lead to more manageable symptoms and a better quality of life that you deserve!
What Should I Do If I Think I am Undiagnosed or Misdiagnosed?
If you feel you are misdiagnosed or have a condition that should be diagnosed, don’t worry, you’ve actually made the first step. Acknowledging that there is something, and not dismissing yourself or your body’s pains is a good start!
The next step is to prepare for a journey. As mentioned before, many people are dismissed for their complaints or experiences. You may experience frustration and meet healthcare providers that aren’t right for you. But remember: you are your own advocate. Don’t let someone tell you that it’s “in your head.” You have the right to receive proper diagnosis and to have your story listened to.
There are many commonly missed diagnoses for people with vaginas, but hopefully you have been given the courage to try to understand your symptoms in order to take action towards relieving them! It may take a couple tries, and people may tell you “no” more than once, but don’t give up on yourself. You got this!
Want more information on personal health? I’m always on Instagram, available in the DMs for any quick questions you may have! I am ready to be your hype gal, and also provide free 20 minute consultations if you’re ready to take the next step for your personal health.
More content you may like:
- Diagnosing Pelvic Congestion Syndrome
- How to Treat Endometriosis Pain
- Quick Guide: Chronic Pelvic Pain
- [Buzzfeed Article] After Years Of Doctors Dismissing This Woman’s Pain As “Bad Periods,” She Finally Got A Diagnosis And Her Reaction Is Tearfully Validating
Some of the links on this page may be affiliate links. Laura Meihofer’s LLC is a participant in the Amazon Associates Program and others, as an affiliate advertising program designed to provide a means for sites to earn advertising fees by linking to products Laura organically uses and trusts. If you purchase a product through an affiliate link, your cost will be the same, but Laura will automatically receive a small commission. Your support is greatly appreciated and helps her spread the message about pelvic health!