When I first began researching chronic pelvic pain, I was blown away at how common these experiences were. I remember thinking back to those dreaded sex-ed classes in school and being angry—angry that there was no attention paid to pelvic pain when I now know the prevalence of the various conditions.
There are varying severities and forms of pelvic pain, and there are multiple conditions that cause pelvic pain. It is estimated that pelvic pain impacts approximately one in seven people with a uterus.
A Few Common Pelvic Pain Conditions
- Endometriosis: a chronic pelvic pain condition that affects approximately 10% of the population, globally. It occurs when endometrial tissue grows outside of the uterus, causing pain during menstruation as well as throughout the cycle.
- Adenomyosis: occurs when the tissue lining the uterus grows in the muscular wall of the uterus and causes severe cramps during menstruation with heavy bleeding.
- Vaginismus: occurs when the vaginal muscles involuntary spasm and tighten when the person attempts penetration of any kind. Dyspareunia is the medical term for painful penetration which is often confused with Vaginismus.
The Struggle To Receive a Diagnosis
Diagnostic lapses or delays refers to an extended period between the onset of symptoms and between a “formal” diagnosis. Research indicates that there are mass diagnostic lapses for endometriosis as well as other chronic pelvic pain-related conditions.
When I first began my struggle with chronic pelvic pain and attempted to get medical help, I assumed that I would go to the appointment, get diagnosed, get treatment and ta-da! All better.
I thought it would be an easy journey from point A to point B, and that acquiring a diagnosis would not only be simple but the first step to facilitating “getting better”.
I quickly realized that because these conditions are so poorly understood in the medical community, I would have to push for a diagnosis, and push to be heard. Upon further research, I learned that there is a frequent pattern of pelvic pain conditions being subject to diagnostic lapses.
Because pelvic pain conditions are subject to diagnostic lapses, most of the time the individual has an idea that something/what condition is impacting them before receiving a “formal” diagnosis from a medical source. Because of these lapses we have seen an increase in trust for our own bodily experiences rather than a hyper-emphasis on “doctor is always right,”.
People are arguably becoming more knowledgeable and critical of medical care, and I really think this complicates the idea of a “diagnosis,” in the first place. People with pelvic pain endure symptoms for an average of multiple years before receiving a “formal” diagnosis.
I think that this makes it important to re-conceptualize the idea of diagnosis but also the significance of it. Having a diagnosis doesn’t mean that you are any more valid, just like not having a formal diagnosis doesn’t mean you are not suffering or that you don’t know what is attributing to your pelvic pain.
Why Getting A Diagnosis Is So Difficult
But why are pelvic pain conditions subject to such diagnostic delay? Research shows that there are three central sources of diagnostic delay: the individual level, the medical level, the structural level.
1. Individual Level
Though termed at the “individual” level, diagnostic lapse from this source actually comes from more general societal misconceptions about menstruation and pain. People with periods are faced with a lot of misinformation about what it means to menstruate from a very young age.
I remember feeling embarrassed of my menstruation—sneakily hiding pads in my sweater sleeve at high school before asking to go to the bathroom, being scared to ask adults for menstruation products if I surprisingly got my period at school…. all of these interactions made me feel as though my period was something that I couldn’t discuss openly.
This “hiding” of menstruation has resulted in a general misunderstanding of what sort of pain or symptoms are “normal” when you have a uterus.
Additionally, because pain is so associated with menstruation experiences, people just assume and are taught its normal.
An example of this in a research study on endometriosis specifically found that one of the main reasons that diagnostic delay occurred was even though the participants recognized that their pain during and outside of menstruation was disruptive to their lives, they had internalized the normalization of their pain to the point where they thought they simply had “bad luck”.
2. Medical Level
As well as diagnostic lapses occurring at the individual level, diagnoses are heavily delayed at the medical level. A lot of pelvic pain conditions involve differential diagnosis—which refers to how a doctor must differentiate between two or more conditions that could be attributed to the person’s pain.
For example, IBS and endometriosis overlap in the symptomatology and have few options for definitive testing. Similarly, Dyspareunia (painful penetration) and Vaginismus (involuntary vaginal muscle spasms) are frequently confused for one another.
Differential diagnosis is what primarily leads to diagnosis lapses because for people with pelvic pain because of the overlapping symptoms there is a lack of adequate testing developed and available. There is also a tendency of medical professionals to dismiss pelvic pain conditions due to this lack of research which would further lead to misdiagnoses.
3. Structural Level
There are also a number of structural issues in the institution of medicine that disproportionately impacts those with pelvic pain that contribute to diagnostic lapses.
Related to symptomology, a professor from the University of Maryland School of Medicine said that medical school teaches doctors to look for the most obvious diagnosis that fits the symptoms and used the analogy of “if you hear hoofbeats, think of horses, not zebras”.
In addition, it is known that a key issue in medicine is the lack of time that professionals can spend with the patient, often resulting in people feeling rushed out of appointments.
These two structural issues create an environment where doctors are looking for the most obvious diagnosis and have limited time to do so. This means that complex pelvic pain conditions that often need more intentional time to be properly diagnosed fall through the cracks. Patients bounce around from doctor to doctor trying to find someone who takes the time that is needed.
The fact that diagnostic lapses are considered a common experience for those with pelvic pain conditions, as well as the fact that doctors themselves are pointing out the structural failures that contribute to this failings, means something needs to change.
Though changing the medical institution is hard to do and will take a lot of time, I think we need to start educating people on these conditions, early.
Too many times have people told me that they didn’t know Vaginismus even existed before I posted about it, and too many times have people told me that they had been normalizing their own pain because they thought that penetration should hurt.
I think we need to create a community and make people more comfortable talking about things that society has wrongly labeled “taboo”.
This fact itself is why I am so honoured and excited to be a part of somedays, because I believe that bringing awareness and building community for people with pain will normalize these conversations, and hopefully in the future we can see people become more open with their struggles and find beauty in relief.