AJust as I slowly opened my eyes and saw a bright white light in front of me, I heard a soothing voice speaking to me from above. I felt drawn to it, but a gentle hand on my arm made me suddenly realize that, apart from my shorts, I was naked under a rice paper-thin hospital gown. "The operation went well," the voice said, patting my elbow reassuringly. - I found endometriosis and adenomyosis, but we'll talk about that when you sober up.
Gland - what? But at that moment I didn't care, because that voice was somehow the savior I'd been waiting twenty years for—a doctor who not only listened to me but finally answered my questions with something tangible. Pray, something's wrong t "no"or "maybe", but an actual specific diagnosis.
I don't know when my symptoms started. I was probably 15 years old, I was leaning against the school bus with stomach cramps. Maybe it was when I went on the train at the age of 18, went to the toilet in a French hotel and found that it hurt to pee.
When I got home, I went to my GP - the same GP my teenage sister asked for pills from, and he winked at her and said, "Have fun!" He diagnosed cystitis by dipping a strip of litmus paper into a small sample jar—a test doctors still routinely use to check for urinary tract infections in women, but it turns out that at least one in five gives the wrong result. case. I was on the antibiotic trimethoprim, and when I got a headache, I was taking another antibiotic called nitrofurantoin.
The stomach pains did not go away. No, let me put it another way: it disappears for weeks and sometimes months. A third drug, cephalexin, seems to have hit the nail on the head with no side effects. So it became my crutch. A few times a year I would go to the GP and be drenched in urine and leave with a prescription. Three capsules a day, even for seven days. till next time. have fun!
The pain gradually became stronger, and the intervals between the so-called cystitis infections became shorter and shorter. One day during my sophomore year of college, I couldn't leave my boyfriend's bed. I was lying with my legs folded across my chest and dialed the number of a taxi company to take me to surgery on campus - we never called a taxi, it was before Uber so you know it's serious when someone does that.
"You're just unlucky," the doctor told me. No matter which GP I go to, no matter where I am, male or female, I am asked the same question. do you drink Are you sexually active? Are your panties too tight? If I were to hear of another woman being questioned so mercilessly today, I would probably call it victim blaming.
I began to feel anxious about going out, even on weekends, in case the "attack" made me miserable. I would call my general practitioner and cry and beg for a preventive prescription. No, cranberry juice does not help. Yes, my underwear is cotton.
I began to recognize the early warning signs: dry throat, shaking, nausea. On the advice of a general practitioner, I take antibiotics every time I feel a 'tingle' and always after sexual intercourse. In retrospect, it seems incredible that no one thought that something else could have happened.
But when you're told over and over again that it's just bad luck and that some women suffer more than others, you believe it. You trust professionals. You don't defend yourself because you don't understand what you have to fight for.
I'm sure it sounds like a cry for sympathy or a memoir about menstrual woes. But I want to tell this story, although it embarrasses and embarrasses me that endometriosis affects one in 10 women of reproductive age in the UK, but due to misconceptions about women's pain, endometriosis takes an average of eight years to be diagnosed and is dismissed as dysmenorrhoea (periodic cramping). and the lack of simple tests for its identification. You probably know someone who is suffering. I know that I am always careful, as a gynecologist, when friends tell me about pain.
In endometriosis and adenomyosis, the lining of the uterus (the lining of the uterus that women shed each month) grows outside the uterus when it shouldn't. Endometriosis usually spreads to the ovaries and fallopian tubes. In the case of adenomyosis - the "evil sister" of endometriosis - it develops within the muscular wall of the uterus itself, causing it to swell. This extra tissue cannot be shed during the menstrual cycle, so it builds up, causing inflammation, scarring, cysts, and reproductive organs to "stick" together.
There are many symptoms, but the main ones are transverse: severe menstrual pain, pain in the pelvis, heavy bleeding, painful sex, fatigue, headaches and, in severe cases, infertility. If you have one disease, you have a 50% chance of getting another. It's not fun.
Given that it is a female epidemic, little is known about both conditions due to a severe lack of research funding. In context, endometriosis is as common as diabetes, but about 20 times more is spent on treating diabetes. As the NHS website states, "The cause of endometriosis is unknown."
Women's Time host Emma Barnett, a woman with endometriosis
Hopefully you've at least heard of it, thanks to famous patients likefemale HoursPresenter Emma Barnett, model/presenter Alexa Chung and the late Hilary Mantel and the 2020 Parliamentary Cross-Party Review, which interviewed 10,000 women with endometriosis and found that 58% had been diagnosed. They had seen their GP more than 10 times before. What about adenomyosis? I get it, but I can't even say it. It is estimated that between 20% and 60% of women may suffer - a fact that is poorly understood.
There is no cure. Your options are: use hormonal birth control, such as the pill or IUD; get pregnant temporarily; have a hysterectomy. Imagine if there was a condition that affects 1 in 10 men, and they were told that the only way out was to remove a large, vital organ (don't laugh behind your back). It just won't wash off.
That could change. This autumn, a Scottish Government-funded trial began using the anti-cancer drug dichloroacetic acid to ease endometriosis pain. If successful, it will be the first non-surgical, non-hormonal treatment of the disease in 40 years. The government also included endometriosis in its women's health strategy published last August, saying a "knowledge gap" about it must be closed.
But I'm also angry about my lack of knowledge. Sitting at my laptop, I stumbled across a page on a UK endometriosis website which showed that "endo" and "adeno" - nicknames for the conditions - can masquerade as IBS. In my twenties I had digestive problems that sent me running to the nearest toilet. Doctors blamed me for having a salmonella infection at the age of 22, and I just nodded and accepted what in hindsight was an obvious "I didn't know" code.
Then came the headache. And he passed out. I'm putting together this painful puzzle as I type. I would pass out without warning for years. I'll wake up on the floor. I passed out on the subway and buses, passengers ignored me thinking I was drunk, I got out and called my parents in agony. At a bar on Christmas Eve, I suddenly lost my vision and grabbed the back of what I thought was my boyfriend's sweater—my nails digging into his skin in a panic—only to discover, come on, that I'd accidentally injured some guys in the bar.
That time I went to the ER and I was laying on the ward and the only other patient was a man in a Santa suit, I'm not kidding, another man in a Santa suit was holding his hand. The doctor at the time told me that I would "grow up". No one asked me about my period. How I wish I could go back and hug that girl and demand some answers on her behalf.
Instead, the girl is comfortable being uncomfortable. When I describe how I feel to my family, I talk about my "normal pain," even though it often distracts me and makes me kick things.
I didn't because I was broken. I attributed it all to my hard work at the newspaper. I didn't know that women with endometriosis suffer from chronic fatigue twice as often.
"You're always tired," my husband Tim said on loop in the ten years since we met. It was like with the Horlicks I just needed to go to bed earlier - and considering how many times I started waking up in pain during the night, I did.
It's been over a decade since I first visited my GP with pain and relief. Instead, at 2 a.m., I would lie on my bedroom floor, stifling a cry so I wouldn't wake Tim, and rub my stomach—grabbing handfuls of flesh, as if I could somehow get the pain out of my body.
I can usually turn around and open the nightstand door and pop a paracetamol tablet into my mouth. I don't need water so I'm used to swallowing pills. Fill your mouth with saliva, stuff it inside and try not to choke.
It was a very lonely time. Looking back at my WhatsApp messages from that time, you can see how much it affected my life as I kept canceling plans and letting my friends down. Or just go spend the night making faces and wishing I was home. There are days without work when I know that sitting at a desk is out of the question.
In fact, work finally made me see a specialist. I was a women's editor at a newspaper when endometriosis started making headlines and prominent women started sharing their stories of unexplained pain and misdiagnosis. After writing several articles about this little-known disease, I was sitting at my desk in agony one day, not thinking about it, when I suddenly realized that it all sounded familiar.
Writer Hilary Mantel suffers from endometriosis
Features of Rex
I found a personal counselor who put me on a roulette of very strong antibiotics with no success. There was talk of a bladder infection and then more medication. The goal never seemed to be to find the root cause of my pain, just to control it. When I was inspired by what I saw at work, I asked, "Could I have endometriosis?" He immediately dismissed the idea.
At least I wasn't on weaponized painkillers or anti-depressants like many women. But until then, I'll do anything to make the pain stop.
The truth is, I'm not that bad. Most of the time my work is going well. I live a social life. I didn't have to go back to my parents, give up on my dreams, or accept that I couldn't exercise—all things I'd heard from other women. Plus I have private health care that many people can't afford and have to wait to see, let alone diagnose.
A few months before the pandemic, I was exhausted and decided to see another specialist. There are more pills, yes, but in a targeted way that actually starts to make a difference. My daily discomfort turned into absolute pain – but the pain was regular. When, during a Zoom consultation during quarantine, he suggested I see a gynecologist who specializes in endometriosis, I shed tears of relief and frustration.
I also cried during my first appointment with the gynecologist when she told me that what I was describing sounded like endometrium and that she would scan me with an ultrasound wand that can detect serious cases of the disease - something the doctors never suggested. another diagnostic method is laparoscopy, a keyhole operation, which examines the inside of the abdomen and uterus to determine endometriosis, and if something is found, it is immediately removed with a laser. It's basically a "while you're there" situation.
My gynecologist said my ultrasound didn't show anything wrong, but all the evidence points in one direction. She recommended an operation. But I hesitated. Superficially, I declare that now is not the right time to take two weeks off work. In fact, I've become so conditioned to believe it's not endometriosis that I no longer want to get "I can't see anything here" from my doctor. So I put it off for six months and nervously went ahead a year ago — after twenty years of waiting, waking up from anesthesia, to hear that bittersweet diagnosis: endometriosis was treated with a laser, adenomyosis of the uterus is not helping, fertility looks good, but we can never say for sure .
This is where stories like mine often end, confirmed after years of being told nothing is wrong. A few days after the surgery, I wrote an article saying, "Sometimes knowing you're not a 'hysterical woman' is healing in itself." Okay, for a while. But we need to talk about what happens next, when the glow of "I told you so" fades.
My initial relief gave way to anger that I had spent most of my adult life in pain, some of which I could have been spared.
What am I missing? Years where I never felt completely relaxed. And now I have to be immune to most antibiotics. There are also things too raw to even touch: accepting my pain, how disconnected I feel from my body when I look in the mirror, and instead of fighting harder to be heard, there is a future. Since up to half of women who have surgery will have endometriosis return within five years, this means you're caught between relief after treatment and the horror of your body failing you again (if it ever does). doctor). Many people will find out too late that their fertility is compromised - if diagnosed early, they may have frozen their eggs.
I may never know how many of my health problems are caused by endometriosis and its evil sister, I may never know if I have urinary tract infections, bladder infections, irritable bowel syndrome, or if it has always been these conditions. But what I understand and am starting to accept is that none of this is my fault and my underwear is never too tight.
good friend? The truth about female friendshipClaire Cohen's work is published by Transworld on April 20, priced £10.99
modelingHannah Rogers.hair and makeup Alice Theobald of Arlington Artists using Trish McEvoy and Drybar.Main Image: Claire Cohen in Self-Portrait Dress (www.matchesfashion.com).shoe,Manolo Blahnik.Image 2: Dress, Victoria Beckham (fenwick.co.uk)
If you feel your primary care doctor doesn't take your symptoms seriously, ask for a referral to a specialist or go to a different practice for a second opinion. A fresh set of eyes can be extremely helpful. Review how to present your symptoms factually, clearly, quickly, and without unnecessary minutiae.What to do when no doctor can diagnose you? ›
What should I do if I can't get a diagnosis? If you think you have an underlying disease that hasn't been diagnosed, you can ask your primary care provider for a referral to a specialist. And if you or your doctor suspect the disease could be genetic, you can always make an appointment at a medical genetics clinic.What are the signs of medical Gaslighting? ›
Signs of Medical Gaslighting
“It's all in your head.” “Your pain is manageable.” “You're just tense.” “You're too young to be feeling – ”
- They Know When You're Lying.
- About Any Professional Sanctions or Problems.
- What They Don't Know.
- They Might Make Their Decision in Under 20 Seconds.
- They Don't Have Time to Explain the 'Whys'
- They Don't Understand Your Insurance Plan—So You Should.
- They Won't Answer, "What Would You Do"?
The ADA law does prohibit discrimination against individuals with disabilities who have chronic pain, as well as people in recovery from opioid and substance use disorders.What is it called when a doctor ignores your symptoms? ›
Medical gaslighting is when a healthcare provider dismisses your concerns or symptoms, causing you to question them yourself. Women and people of color are groups that commonly face medical gaslighting.What is medical Gaslighting? ›
For example, medical gaslighting occurs when healthcare professionals downplay or blow off symptoms you know you're feeling and instead try to convince you they're caused by something else—or even that you're imagining them.What is the most difficult disease to diagnose? ›
- Irritable Bowel Syndrome. 1/14. This condition causes pain in your belly area and changes in bathroom habits that last at least 3 months. ...
- Celiac Disease. 2/14. ...
- Appendicitis. 3/14. ...
- Hyperthyroidism. 4/14. ...
- Hypothyroidism. 5/14. ...
- Sleep Apnea. 6/14. ...
- Lyme Disease. 7/14. ...
- Fibromyalgia. 8/14.
Regardless of its source, chronic pain can disrupt nearly all aspects of someone's life – beyond physical pain, it can impede their ability to work and participate in social and other activities like they used to, impact their relationships and cause feelings of isolation, frustration and anxiety.What is medical ghosting? ›
Ghosting is a visual artifact that occurs in magnetic resonance imaging(MRI) scans. These artifact are a consequence of environmental factors or the human body (such as blood flow, implants etc.).
By dismissing patients, we mean directing patients to leave your practice and seek primary care elsewhere."Do doctors ever withhold information from patients? ›
Except in emergency situations in which a patient is incapable of making an informed decision, withholding information without the patient's knowledge or consent is ethically unacceptable.Can doctors gossip about patients? ›
It's All About Identifiable Information
Healthcare professionals may talk about real-world experiences they've had with their patients all they want. The only way they might break the rules is whether or not they give any identifiable information away during their storytelling.
Essentially, to establish true informed consent, a physician is now required to disclose all risks that might affect a patient's treatment decisions.When doctors are condescending? ›
If the doctor is condescending or makes you feel foolish, it's not a healthy partnership. Friends and family often ask me to recommend a doctor. Typically it's because for some reason they aren't happy with the current one or have developed a new medical condition and need an expert.Why won t my doctor give me pain meds? ›
Changing Standards for Pain
Speak directly with your doctor about why they've prescribed you certain medications and why they won't prescribe you others. Some additional reasons why your doctor might not prescribe pain medications include: Drug-seeking or disruptive behaviors from patients. Personal beliefs and values.
While in the strictest sense, long-term pain is not normally categorised as a stand-alone disability, in the majority of cases, it is a symptom of a long list of defined disabilities, such as cancer, fibromyalgia, or arthritis.Can doctors prescribe opioids for chronic pain? ›
Doctors prescribe opioids – like hydrocodone, oxycodone, and morphine – to treat moderate to severe pain. Opioids are often prescribed following a surgery or injury or for certain health conditions. These medications carry serious risks of addiction and overdose, especially with prolonged use.Are doctors allowed to ignore patients? ›
Doctor is concerned with legal or ethical conflicts: Any time a legal or ethical situation comes up, a doctor is fully within his or her right to decide not to treat the patient any longer.What is it called when doctors don't take you seriously? ›
By Sarah Jacoby and Robert Powell. If you've gone to the doctor only to be told that your concerns aren't serious or that you're "just stressed," you aren't alone. This unfortunately common behavior, sometimes called medical gaslighting, leaves patients — especially women — feeling dismissed.
Some of the “red flags” are: The patient is from out of state. The patient requests a specific drug. The patient states that an alternative drug does not work. The patient states that their previous physician closed their practice.Who is most likely to be gaslighted by a medical professional? ›
Women and people of color are especially likely to experience medical gaslighting. Research on various medical conditions has repeatedly shown that women's and people of color's symptoms are less likely to be taken seriously than those of White men.How do you tell if your doctor really cares about you? ›
- 1.Constant update. Even without you calling, good doctors must encourage multiple updates with patients. ...
- 2.Non-tolerance. ...
- 3.Personal talks. ...
- 4.Transparency. ...
- 5.Easy communication. ...
- 6.Positive interactions. ...
- 7.Practical suggestions. ...
- 8.You feel satisfied.
- Write down your symptoms and concerns. ...
- Ask questions. ...
- Bring someone to your appointment with you. ...
- Don't be afraid to repeat yourself. ...
- Consider seeking a second opinion. ...
- Remember that your symptoms are real.
Hutchinson-Gilford Progeria Syndrome (HGPS)
HGPS is an extremely rare genetic disorder in which the symptoms resemble aspects of ageing at a very early age. The condition affects one in eight million live births and those born with HGPS typically live to their mid-teens to early twenties.
Neurological disease such as stroke, motor neurone disease, Alzheimer's and multiple sclerosis aren't diagnosable from blood tests. Similarly, the diagnoses of depression, schizophrenia, ADHD and autism lack a specific blood diagnostic marker.What are the signs symptoms that your nervous system is malfunctioning? ›
- Persistent or sudden onset of a headache.
- A headache that changes or is different.
- Loss of feeling or tingling.
- Weakness or loss of muscle strength.
- Loss of sight or double vision.
- Memory loss.
- Impaired mental ability.
- Lack of coordination.
Borderline personality disorder (BPD) has long been believed to be a disorder that produces the most intense emotional pain and distress in those who have this condition. Studies have shown that borderline patients experience chronic and significant emotional suffering and mental agony.What are 5 diseases that could be the cause of chronic pain? ›
- irritable bowel.
- back pain.
Changes in brain structure
Being in long term pain literally changes the structure of our brains. Chronic pain reduces the volume of gray matter in our brains. Grey matter is the area of the brain which controls learning, attention, memory, thought processes, motor control and coordination.
Medical gaslighting is when doctors blame the patient's mental state for their symptoms, for example. Or when they brush off the patient's worries, claiming there is nothing wrong when there is. This can happen with other medical providers as well.What does ghosting do to your brain? ›
Ghosting hurts deeply. It activates a systemic experience of loss that stems from our amygdala, hippocampus, and prefrontal cortex. It's actually a full brain experience. * We are left wondering what went wrong, without the benefit of an explanation, the opportunity to ask questions, or clarify the sequence of events.What is the trauma of ghosting? ›
Traumatic Effects of Being Ghosted
Sometimes, the trauma may seem like depression. Other times, ghosting can cause anxiety and panic attacks. Still other times trauma may lead to obsessive thoughts and confusion. Finally, trauma may also make you feel profound shame.
A doctor might dismiss patients because they aren't following clinical recommendations or routinely cancel or miss appointments. Belligerent or abusive behavior is also grounds for dropping a patient. In certain instances, physicians may be legally liable for “patient abandonment,” a form of medical malpractice.Why do doctors dismiss patients? ›
Missed appointments, chronic lateness, drug-seeking behavior, belligerent attitudes and refusal of treatment can strain a physician-patient relationship to the breaking point.How might a doctor commit abandonment? ›
An example of intentional abandonment is the refusal to see a patient after, for example, failure to pay for the received medical services. Miscommunication regarding call coverage or negligence that occurs through errors in the scheduling system are examples of inadvertent abandonment.What is benevolent deception? ›
Benevolent deception, or mutually beneficial lies are false, misleading statements that are intended to benefit both the person we're lying to and ourselves.What is it called when a doctor withholds information? ›
The practice of withholding pertinent medical information from patients in the belief that disclosure is medically contraindicated is known as “therapeutic privilege.” It creates a conflict between the physician's obligations to promote patients' welfare and respect for their autonomy by communicating truthfully.What happens when a doctor withholds information? ›
The AMA labels the withholding of pertinent information from a patient in a situation other than an emergency as ethically unacceptable. Doing so could leave medical professionals liable for claims of medical malpractice.Do doctors scold patients? ›
And don't forget that scolding can be a way of expressing concern. If your doctor is worried that you are not progressing as well as he/she had hoped, or if you have not been compliant, then angry or scolding words can be your doctor's way of expressing frustration.
In addition, discussing patient care with partners and colleagues for clinical advice and support is also a very common and important part of the practice of medicine.Do doctors talk to their family about patients? ›
If the patient has suffered some traumatic injury and cannot make medical decisions for themselves, the doctor may discuss the patient's medical information with their next of kin. The family member will often need this information so they can make an informed decision about the next steps in medical treatment.What not to tell your doctor? ›
- Anything that is not 100 percent truthful. ...
- Anything condescending, loud, hostile, or sarcastic. ...
- Anything related to your health care when we are off the clock. ...
- Complaining about other doctors. ...
- Anything that is a huge overreaction.
Survey Says 7 Percent of Doctors Hide Mistakes
Fortunately, 78 percent of doctors surveyed say it's never acceptable to cover up a mistake.
The bottom line is the patient does have a right to know his or her diagnosis, for two main ethical reasons: 1) it is the patient's information, not anyone else's, so the patient is entitled to that information; and 2) there will always be additional decisions to make, even if the diagnosis is terminal, so the patient ...What kind of patients do doctors not like? ›
- The “That Little Green Pill” Patient. If you don't know your medications, we might be in big trouble. ...
- The “You're Late Again!” Patient. ...
- The “Can I Have My Forms Now?” ...
- The “Oh, And One More Thing…” ...
- The “Throw Grandma From the Car” Person. ...
- The “The Internet Says So” Patient. ...
- The Secretive Patient.
Say nothing and let it be. Calling someone on their insulting behavior, if you aren't sure it was intended, can create more problems later if you embarrass them or make them angry. Say something, but not in a confrontational manner.What is inappropriate Behaviour with a doctor? ›
Belittling or berating statements. Use of profanity or disrespectful language. Inappropriate comments written in the medical record. Deliberate failure of cooperation without good cause.
In Florida, California and a few other states, physicians are legally required either to treat pain or refer. In other states, the obligation is usually defined in the medical board regulations.What is medical gaslighting? ›
For example, medical gaslighting occurs when healthcare professionals downplay or blow off symptoms you know you're feeling and instead try to convince you they're caused by something else—or even that you're imagining them.
- Get descriptive: use metaphor and memoir. You can help doctors understand just how debilitating your pain is by being more descriptive. ...
- Describe your day. ...
- Talk about function, not feeling. ...
- Share your treatment history.
Ignoring your pain can be a very dangerous gamble. Pain is not a natural or normal human condition – it is your body's way of saying something is wrong. As a physical therapist, I see patients all the time who have ignored their pain for too long and are now facing serious injury and a longer recovery.What is patient abandonment in pain management? ›
Patient abandonment occurs when a physician terminates a treatment relationship without enough notice for the patient to secure a replacement clinician. This is a form of medical malpractice. Patients regularly sue physicians for injuries resulting from a lack or delay in care.What does chronic pain do to a person? ›
Regardless of its source, chronic pain can disrupt nearly all aspects of someone's life – beyond physical pain, it can impede their ability to work and participate in social and other activities like they used to, impact their relationships and cause feelings of isolation, frustration and anxiety.What is gaslighting chronic pain patients? ›
Medical gaslighting occurs when a physician or other medical professional dismisses or trivializes a person's symptoms. They may mistakenly determine that pain or other symptoms are not real or simply a result of stress or depression. When this happens, it may take years, if ever, to receive a proper diagnosis.How do you deal with a dismissive doctor? ›
If the doctor is being dismissive, push back. Engage them as you would a partner. Let them know you appreciate their expertise, but remind them that you are the foremost expert on your own body. Work together to reach a diagnosis and treatment plan.Can doctors prove chronic pain? ›
To see if there's an injury or identifiable condition causing your chronic pain, the doctor will need to run diagnostic tests. For the imaging tests (X-rays, MRIs), you may have to go to an imaging center to have these done; the results will be sent back to your doctor, who will interpret them for you.Can doctors tell how much pain you are in? ›
Answer: There are no specific blood tests that determine the level of pain you're experiencing.Can a doctor tell how much pain you have? ›
Pain is, of course, the most subjective of all medical symptoms. There is currently no reliable and accurate method to objectively quantify the pain a patient is experiencing. One patient's “three” may well be another patient's “seven”.Why is chronic pain ignored? ›
Unlike acute paint, which is sudden, sharp, and easily treated, chronic pain is often ignored since its constant state establishes a new “standard” which the body can adapt to feel “normal.” Since the source of chronic pain can be difficult to discover, treatment is a challenge.
- Severe abdominal pain. Possible issue: appendicitis or acute pancreatitis. ...
- The worst headache ever. ...
- Low back pain coupled with fever. ...
- Chest pain. ...
- A pain in one calf. ...
- Searing pain in your big toe. ...
- Menstrual cramps that don't improve with medication. ...
- Painful urination in men.