"The U Project" -
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Is a history of complex, gender based trauma a contributing factor to this cluster of symptoms wrapped around debilitating but medically unsupported pain?
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Note 'The U Project' is a working title.
From 2019 - 2023 a team specializing in peer support for people experiencing addiction, trauma and homelessness as well as other complex challenges had the opportunity to receive direct support made available by the agency they worked for. Tom Regehr; a consultant not affiliated with the employer, facilitated one on one sessions and was successful in creating a safe space where the peer workers could openly discuss anything that affected their work; this included personal challenges.
The peer workers, all women, had their own experiences with either addiction, mental health and homelessness and were in their own recovery. In the sessions it quickly became clear to Tom that the women also shared many more experiences among themselves.
He noticed that several of the women had unexplained pelvic pain unrelated to menstruation or bladder tract. This pain was described as debilitating, one of the women shared “I was curled up on the living room floor sweating and crying, It was all I could do”. It also revealed that the women most often would not talk to others about this experience with the exception of emergency department staff and occasionally their family doctor. Tom brought light to these issues and saw a correlation between similar life experiences and pelvic pain.
Each woman had a similar history of early childhood and lifelong chaos including neglect and traumas: sexual abuse, physical abuse, gender based emotional abuse as well as verbal abuse; often inflicted by their mothers. They also shared an unreasonable amount of pressure or expectations that was placed on them either by self or others. Most experimented with substances then left the mainstream party culture by furthering their consumption which often lead to severe consequences with mental health challenges, addiction challenges, crime leading to charges, court appearances and sentencing to name a few. The women shared they feel a hyper-vigilance from the long term ‘shit show’ they experience.
The women identified their main area of concern was surrounding pelvic pain. Severe pain that only responds to heavy duty painkillers. Pain that cycles in severity with no apparent link to other issues such as menstrual, reproductive or bladder. Symptoms of sexually transmitted infections, yeast infections and bladder infections will sometimes occur but will not show up on medical tests. These symptoms will sometimes respond to traditional treatments but will reoccur within weeks or months. The women described “monster periods” that are irregular that cause ongoing suffering. The women shared they have pain during sex, leading to an inability to enjoy sex and pleasure.
It was also shared that when the women did open up to medical staff they were not only repeatedly misdiagnosed, received subpar treatment if any at all and dismissed. They were also met with disrespect from medical staff and sometimes overtly mocked and shamed causing further suffering, further isolating themselves making them reluctant to share what they were going through with even family and friends. And reinforcing the idea they held that there was something inherently wrong with them.
The peer workers, all women, had their own experiences with either addiction, mental health and homelessness and were in their own recovery. In the sessions it quickly became clear to Tom that the women also shared many more experiences among themselves.
He noticed that several of the women had unexplained pelvic pain unrelated to menstruation or bladder tract. This pain was described as debilitating, one of the women shared “I was curled up on the living room floor sweating and crying, It was all I could do”. It also revealed that the women most often would not talk to others about this experience with the exception of emergency department staff and occasionally their family doctor. Tom brought light to these issues and saw a correlation between similar life experiences and pelvic pain.
Each woman had a similar history of early childhood and lifelong chaos including neglect and traumas: sexual abuse, physical abuse, gender based emotional abuse as well as verbal abuse; often inflicted by their mothers. They also shared an unreasonable amount of pressure or expectations that was placed on them either by self or others. Most experimented with substances then left the mainstream party culture by furthering their consumption which often lead to severe consequences with mental health challenges, addiction challenges, crime leading to charges, court appearances and sentencing to name a few. The women shared they feel a hyper-vigilance from the long term ‘shit show’ they experience.
The women identified their main area of concern was surrounding pelvic pain. Severe pain that only responds to heavy duty painkillers. Pain that cycles in severity with no apparent link to other issues such as menstrual, reproductive or bladder. Symptoms of sexually transmitted infections, yeast infections and bladder infections will sometimes occur but will not show up on medical tests. These symptoms will sometimes respond to traditional treatments but will reoccur within weeks or months. The women described “monster periods” that are irregular that cause ongoing suffering. The women shared they have pain during sex, leading to an inability to enjoy sex and pleasure.
It was also shared that when the women did open up to medical staff they were not only repeatedly misdiagnosed, received subpar treatment if any at all and dismissed. They were also met with disrespect from medical staff and sometimes overtly mocked and shamed causing further suffering, further isolating themselves making them reluctant to share what they were going through with even family and friends. And reinforcing the idea they held that there was something inherently wrong with them.
Here is a summary of the main Symptoms:
Research summary:
A review of existing research around the world is focused on MUS-CPP and completed Sept 2023 indicates that the phenomena is real, a known problem. The papers often has recommendations or suggested responses.
The researchers finding and the searching that we have done ourselves indicates,
- Medically UnSupported Chronic Pelvic Pain or MUS-CPP
Severe, recurring pelvic pain not related to reproductive or bladder tract that does not show up on scans and tests. - Recurring STI/Infection symptoms Painful, visible symptoms of STI’s and infections that do not show up on tests.
- Problem Periods. As a minimum irregular, painful periods.
- Pain during sex and lack of ability to enjoy sex
In some it was consistent, others the pain varied... - Dismissed, minimized and worse by Medical professionals.
The amount and severity of the dismissal by medical people was sometimes described as “I now have medical trauma...” - Not sharing with anyone – even best friends etc.
This is staggering, allowing how this generation is generally so open about ‘personal things’ such as menstrual cycles, infections etc. It is shame based – where did such shame come from?
Research summary:
A review of existing research around the world is focused on MUS-CPP and completed Sept 2023 indicates that the phenomena is real, a known problem. The papers often has recommendations or suggested responses.
The researchers finding and the searching that we have done ourselves indicates,
- Women with complex trauma, addiction, exposure to street life or homelessness etc it is very common. In the general population estimates vary from 5% to 20% but we are sure than Chronic, unexplained pelvic pain is a factor for about 5% of Canadian women **. That is about 2 million women.
- A general lack of awareness among medical professionals, even OB-GYNs.
- A lack of awareness among women in general
- No apparent, easy-to-find awareness raising efforts in the western world (Australia thru to western Europe)
- No apparent, easy-to-find, identified, direct support for the women suffering...
