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This document contains the
TiNMAN exploratory questions used to help identify and track symptoms of adenomyosis and endometriosis and build an interactive personal timeline. It also includes detailed sections covering the menstrual cycle, common co-occuring conditions, overlapping symptoms, and key aspects of psychological and physiological welfare.
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There is much more information on this freely available and privacy-protected tool, including how to start using it, and contact options available via
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The menstrual cycle is a cyclical sequence of hormonal, ovarian, and uterine changes designed to prepare the body for potential pregnancy and that repeat one after another in a continuous series, typically from puberty until menopause. The length of this menstrual cycle can vary between individuals but is typically between every twenty one to thirty five days, with around twenty eight days being the average, and it tends to become more regular with age.The menstrual cycle consists of four distinct phases and, using a textbook model twenty eight day cycle as a broad guide, they are
- menstruation, commonly referred to as the period, from days one to five and a time of bleeding, cramps and low energy. This is when, if pregnancy did not occur in the previous cycle, progesterone and estrogen levels drop and trigger the uterus to shed its lining.
- follicular, from days six to fourteen and a time of rising energy and increased motivation. This is when the pituitary gland releases follicle-stimulating hormone so causing follicles in the ovaries that are filled with fluid and contain the eggs to mature. The dominant follicle produces estrogen, causing the uterine lining to thicken and the body prepares to release an egg.
- ovulation, typically around day fourteen and lasting about twenty four hours, typified by peaking energy, high libido and increased confidence. This is when a surge in luteinizing hormone, triggered by high estrogen levels, prompts the ovary to release the matured egg and the fertile window opens
- luteal, from days fifteen to twenty eight and a time of potentially life-affecting behavioural, emotional, and physical changes. This is the time when the ruptured follicle, known as the corpus luteum, produces progesterone to maintain the uterine lining for a potential fertilised egg. If no pregnancy occurs, the corpus luteum shrinks so prompting the menstrual cycle to restart.
While occasional irregularities within a usually regular menstrual cycle are natural, consistent and significant deviations from a “normal” pattern can indicate underlying issues, with particular emphasis here on
- Polymenorrhea, typified by periods that occur too frequently, with less than twenty one days between them
- Oligomenorrhea, infrequent periods that occur more than thirty five days apart and often result in only six to eight periods per year
- Amenorrhea, when a period is absent and does not occur for ninety days or more.
Based on your previous three menstrual cycles, how would you describe the regularity and average amount of time it took for your body to complete them?
Premenstrual syndrome, often referred to as PMS, is characterised by a combination of unpleasant but mostly manageable behavioural, emotional, and physical changes that occur in the luteal phase of your menstrual cycle, beginning up to two weeks before your period starts and stopping shortly after the onset of menstruation.
Common behavioural and emotional symptoms, which under normal circumstances would be fully absent for least one week in the menstrual cycle, include
- feeling anxious, upset, or emotional
- mild to moderate mood swings and irritability
- depressive moods or sudden sadness
- brain fog and difficulty concentrating
- appetite changes, in particular food cravings
- insomnia or difficulty sleeping
- tiredness, low energy and fatigue.
Common physical symptoms include
- abdominal bloating caused by water retention
- acne or oily skin
- breast tenderness or swelling, often driven by hormonal changes
- digestive issues, in particular constipation or diarrhea
- tension headaches, typically only mildly or moderately painful but that can last from at least thirty minutes up to several days and are not made worse by physical activity
- musculoskeletal pain, particularly in the back or joints.
If this time included the luteal phase of your normal menstrual cycle then, on those days, how would you describe the impact of any unpleasant but mostly manageable behavioural, emotional, and physical changes?
Premenstrual dysphoric disorder, often referred to as PMDD and far more severe than PMS, is responsible for extremely intense and potentially overwhelming psychological distress that occurs in the luteal phase of your menstrual cycle, beginning up to two weeks before your period starts and stopping shortly after the onset of menstruation.
In addition to the symptoms associated with premenstrual syndrome, key indicators of premenstrual dysphoric disorder include
- overpowering emotional tension leading to volatility and intense rapid mood shifts, in particular
- extreme irritability, anger, or rage
- crushing feelings of desperation with frequent or uncontrollable crying or prolonged spells on the verge of tears
- overwhelming feelings of hopelessness
- interpersonal conflicts driven by heightened emotional sensitivity placing severe strain on relationships.
- crippling bouts of anxiety and feeling out-of-control
- panic attacks, sudden overwhelming episodes of fear that trigger severe physical reactions with symptoms similar to those of anxiety-driven bodily stress including
- dizzying or painful headaches
- a racing heart or chest pains
- intense breathing or shortness of breath
- abdominal pains, stomachache or an upset stomach
- uncontrollable bodily trembling or shaking
- profuse sweating, even when cold
- fatigue or weakness
- tight muscles and muscle tension
- aching in one or more groups of muscle
- fear of losing control or dying.
- fear and living a “half-life” split between “hell week” followed by weeks of damage limitation and repair.
Premenstrual dysphoric disorder is officially classified as a severe and chronic hormone-related mood disorder and symptoms must
- fade once your period has finished
- always be fully absent under normal circumstances for at least one unbroken week within your menstrual cycle
- not represent an increase of another pre-existing psychiatric disorder.
If this time included the luteal phase of your normal menstrual cycle then, on those days, how would you describe the impact of any debilitatingly life-disruptive behavioural and emotional changes?
Menstrual tension headaches are typically only mildly or moderately painful but can last from at least thirty minutes up to several days. They feel like a pressure band around the head and are typically not made worse by physical activity.Menstrual migraines, generally more severe and longer-lasting than other migraine headaches, typically occur two days before the start of bleeding until three days after and symptoms include- dull to severe throbbing or pounding pain on one or both sides of the head that can also affect the face or neck
- sensitivity to light, sound and smell
- nausea, dizziness, and fatigue
- debilitating enough to significantly impact daily activities.
If this time included days closely leading up to or taking place during your period then, on those days, how much were you affected by headaches tied to your menstrual cycle?
Endometrial tissue is the mucous membrane that lines the uterus. It is essential for both menstruation and pregnancy and acts as a dynamic, hormone-sensitive layer that thickens during the menstrual cycle to prepare for pregnancy and sheds during the period if no fertilised egg implants.
Severe period pain, known as dysmenorrhea, can be life-affecting and, if chronic, can lead to long-term changes in how the body processes pain.Period pain that is not linked to an underlying medical condition is known medically as primary dysmenorrhoea. It is caused by the womb contracting to shed its inner lining during a period and usually starts just before the period and can last up to seventy-two hours.
Common markers include- pain in the lower abdomen, possibly radiating out to the back and inner thighs
- nausea, a sensation of feeling sick
- vomiting and/or diarrhoea
- fatigue and/or irritability
- dizziness and/or headaches.
Secondary dysmenorrhoea is caused by an underlying medical condition, with period pain that may begin earlier in the menstrual cycle, a few days before the period, and lasts longer throughout the period than primary dysmenorrhea. It can be associated with- adenomyosis, womb-like tissue growing into the uterine wall
- endometriosis, womb-like tissue growing outside the uterus in other places
- pelvic inflammatory disease, an infection of the upper female reproductive system
- uterine fibroids, solid non-cancerous muscular tumors that grow in or on the uterus.
If this time included days closely leading up to or taking place during your period then, on those days, how much were you affected by period pain?
A typical period involves the loss of the equivalent of about one to five tablespoons of blood over two to seven days, with heaviest flow of brighter red blood in the first two days, often followed by a lighter flow of brown or pink spotting.
Heavy periods, known medically as menorrhagia, can be associated with endometriosis, adenomyosis, pelvic inflammatory disease, and uterine fibroids, and symptoms can include- abnormally prolonged menstrual bleeding, frequently lasting longer than seven days even to the point of virtually continuous flow
- abnormally heavy menstrual bleeding, in some cases severe enough to
- require a change of sanitary products every one to two hours
- bleeding that penetrates through to clothing.
Excessive bleeding, often lasting more than seven days, can cause period-related iron-deficiency anaemia. The significant blood loss depletes iron stores that are essential for the production of haemoglobin, the protein required for the creation of oxygen-carrying red blood cells, and this type of anaemia can lead to- extreme tiredness and lack of energy
- tension headaches
- heart palpitations
- shortness of breath
- pale skin
- hair loss.
If this time included your period then how would you describe your menstrual flow?
Postmenstrual syndrome describes the lingering psychological and physical effects of the body's depleted mental and physical resources after menstruation has completed. In most cases symptoms last for a few days after a period, but can continue for longer and potentially transition into PMS or PMDD so creating an unbroken cycle of suffering.
Psychological symptoms can include- anxiety or mood swings, in particular towards irritability, anger, or teariness, a state of being close to tears characterised by brimming eyes
- spells of crying or depression
- difficulty concentrating
- issues with coordination.
Physical symptoms can include- constant pelvic pain that leads to insomnia, extreme tiredness, and an exhaustion that persists regardless of sleep
- period-related iron-deficiency anaemia, a blood disorder where a low count of red blood cells or haemoglobin reduces oxygen transport, causing
- extreme tiredness and lack of energy
- tension headaches
- heart palpitations
- shortness of breath
- pale skin
- hair loss.
- flu-like symptoms, including heavy, swollen eyelids, aching muscles and joints
- vaginal discomfort, including dryness, itching, or burning
- pain during sex
- the arms and legs feeling so heavy as to make movement difficult.
A disease is a particular abnormal medical condition that adversely affects the structure or function of all or part of an organism, is not immediately due to any external injury, and is associated with specific signs and symptoms.When the immune system attempts to combat diseased endometrial-like tissue, cytokines, also known as inflammatory toxins, are secreted by the misplaced tissue and these internal chemicals can lead to a feeling of extreme fatigue.How would you describe the lingering psychological and physical effects of your last completed period?
Irritable bowel syndrome, often abbreviated to IBS, is a chronic functional disorder caused by the gut and brain over-communicating and affecting the digestive system.
IBS often coexists with increased anxiety. The body's stress response to anxiety is to activate a “fight-or-flight” reaction and release adrenaline and cortisol, the body's primary stress hormones. A consequence is the curbing of non-essential functions including digestion and the potential triggering of immediate abdominal pain, bloating, and bouts of constipation, diarrhoea or both.IBS can be categorised as- IBS-C for people living with constipation
- IBS-D for people living with diarrhoea
- IBS-M for people living with both constipation and diarrhoea.
This question focuses on pain or discomfort you may have experienced as a result of symptoms of irritable bowel syndromepelvic floor dysfunction, in particular- the presence of white mucus in the stool
- bloating and distension, a widening of the girth of the belly, which leads to it feeling uncomfortably full or swollen
- abdominal pain or cramping frequently related to bowel movements and sometimes not relieved by passing gas or stool
- pain in the upper abdomen that worsens after eating and improves after a bowel movement
- episodes of diarrhea and constipation, or alternating between the two
- incomplete evacuation, a feeling that the bowel has not fully emptied after a bowel movement
- urgent uncontrollable need to pass stools
- symptoms that do not necessarily align with the menstrual cycle but may significantly worsen just before or during a period.
In terms of their adverse impact on your quality of life and ability to work or study, how would you describe the influence of symptoms associated with irritable bowel syndrome?
Pelvic floor dysfunction, often abbreviated to PFD, is an umbrella term for conditions including pelvic organ prolapse, urinary incontinence and anal incontinence. It describes an inability to properly control, relax, or coordinate pelvic floor muscles and is caused by weakened or injured muscles. It is typically triggered by childbirth, aging, or surgery.
This question focuses on pain or discomfort you may have experienced as a result of symptoms of pelvic floor dysfunction, in particular- stress urinary incontinence, leakage when coughing, sneezing, running, jumping or bending
- a combination of stress and urge urinary incontinence, leaking urine with a strong urge to pass urine
- coital incontinence, urine leaking during intercourse
- vaginismus, spasm of the pelvic floor muscles on attempted penetration
- prolapse, a bulge in the vagina due to descent of the bladder, rectum, or uterus
- obstetric trauma, physical injuries sustained by the birthing woman during pregnancy, labour, or delivery, as well as significant injury during pregnancy
- symptoms that do not necessarily align with the menstrual cycle but may worsen during a period, in particular towards the end of it.
In terms of their adverse impact on your quality of life and ability to work or study, how would you describe the influence of symptoms associated with pelvic floor dysfunction?
Pelvic inflammatory disease, often abbreviated to PID, is a bacterial infection of the upper female reproductive system - the uterus, fallopian tubes and ovaries - and can affect any woman with a womb, although not everyone with the disease will have symptoms.
PID often stems from untreated sexually transmitted diseases such as chlamydia, caused by the bacterium chlamydia trachomatis, and gonorrhea, caused by the bacterium neisseria gonorrhoeae, and both of which can be carried without symptoms for months or years.If symptoms of chlamydia do appear, which typically happens from seven to twenty one days after exposure, they include- a burning sensation when urinating
- unusual or increased vaginal discharge
- acute pain during sex
- bleeding between periods or after sex
- acute lower abdominal pain.
If symptoms of gonorrhea do appear, which typically happens from two to fourteen days after exposure, they include- mild discomfort that is easily mistaken for a bladder or yeast infection
- a sore throat
- pain or a burning sensation when urinating
- unusual or increased vaginal discharge
- bleeding between periods or after sex
- anal itching, soreness, or discharge.
This question focuses on pain or discomfort you may have experienced as a result of symptoms of pelvic inflammatory disease, in particular- spotting or bleeding between periods or after sexual intercourse
- vaginal discharge that looks, smells or feels unusual
- delays in the start of a menstrual cycle and infection in the uterus lining that can cause increased cramping and heavier period flow
- symptoms that do not necessarily align with the menstrual cycle but may worsen during a period.
In terms of their adverse impact on your quality of life and ability to work or study, how would you describe the influence of symptoms associated with pelvic inflammatory disease?
Polyendocrine metabolic ovarian syndrome, abbreviated to PMOS and previously known as polycystic ovary syndrome, is a lifelong endocrine and metabolic disorder that can affect reproductive-aged women.
The metabolism is the set of life-sustaining chemical reactions that occur within living organisms.The female endocrine system is a complex network of glands that produce and secrete hormones that act as tiny chemical messengers which travel through the bloodstream to organs and tissues and regulate everything from metabolism to mood, growth, and reproductive processes such as the menstrual cycle, fertility, and the menopause.
A major factor of PMOS is insulin resistance causing blood sugar levels to rise. As a response, the pancreas produces excess insulin, which can trigger the ovaries to boost production of androgens. These are the steroid hormones responsible for developing and maintaining masculine characteristics and include testosterone, the primary male sex hormone. Elevated androgens also interrupt normal egg development and regular ovulation.
This question focuses on pain or discomfort you may have experienced as a result of symptoms of polyendocrine metabolic ovarian syndrome, in particular- increased insulin resistance
- menstrual irregularities, such as
- skipped periods
- very heavy periods
- fewer than eight periods a year.
- excessive hair growth, usually on the face, chest, back or buttocks
- alopecia, often presenting as thinning hair on the head or male-pattern baldness
- difficulty losing weight or weight gain
- acanthosis nigricans, a condition that causes dark thick patches of skin that feel similar to velvet to develop in body folds and creases anywhere on the body, but most commonly
- on the neck
- in the armpits
- in the groin, the junctional area on the front of the body where the lower abdomen meets the upper thighs.
- oily skin, or severe or persistent acne
- seborrhea, with symptoms such as
- severe dandruff, flaking, or a thick greasy crust on the scalp
- scaly patches in the eyebrows, eyelids, and the creases beside the nose
- red and well-defined greasy patches on the chest, the back, and moist skin folds such as under breasts or armpits.
- increased fatigue.
In terms of their adverse impact on your quality of life and ability to work or study, how would you describe the influence of symptoms associated with polyendocrine metabolic ovarian syndrome?
Uterine fibroids, known medically as leiomyomas, are solid non-cancerous hormone-driven muscular tumors that grow in or on the uterus, often during reproductive years and mainly affect women who have not been through the menopause. Not everyone has symptoms.
This question focuses on pain or discomfort you may have experienced as a result of symptoms of uterine fibroids, in particular- a bulging but noticeably non-symmetrical abdomen, sometimes referred to as a “fibroid belly”
- persistent pelvic pressure or heaviness
- possible compression of adjacent structures, including the bladder, leading to frequent urination, and the bowel, leading to constipation or bloating.
Uterine fibroids increase the surface area of the uterine lining, which means there is more tissue to shed during the period. They can also prevent the uterus from contracting efficiently to control blood flow and develop a dense vascular capsule, a peripheral network of blood vessels to facilitate their growth. This can often increase overall lower resistance uterine blood flow, and symptoms during menstruation can include- irregular menstrual cycles
- periods that may last longer than seven days or occur closer together
- heavy menstrual bleeding, often involving soaking through period products and passing large blood clots
- spotting or unexpected bleeding between periods
- increased pelvic pain and severe cramping during periods.
In terms of their adverse impact on your quality of life and ability to work or study, how would you describe the influence of symptoms associated with uterine fibroids?
Symptoms on the bladder for adenomyosis, irritable bowel syndrome, pelvic floor dysfunction and uterine fibroids can be persistant.Symptoms on the bladder from endometriosis tend to occur in a regular pattern, usually worsening in the days leading up to and during a period.Common symptoms of problems with the bladder include- a need to urinate often
- urgency when needing to pass urine
- urinating often during the day and usually with just small amounts
- nocturia, the frequent need to wake up one or more times per night to pass urine
- leaking out a small amount of urine if you do not get to a toilet quickly enough
- pain when the bladder is full
- feeling as if you cannot fully empty your bladder
- feeling like you need to urinate even when your bladder is empty.
Cyclical symptoms can also include- blood in the urine
- possible loin pain in the area of the kidneys, just below your rib cage and in your lower back.
Bladder pain syndrome, a chronic condition that is also known as interstitial cystitis, causes pain in the lower abdomen or pelvic region and discomfort that worsens as the bladder fills and eases after urination, accompanied by a frequent and urgent need to urinate.How much were you affected by problems associated with your bladder?
Symptoms on the bowel for adenomyosis, irritable bowel syndrome and pelvic floor dysfunction can be persistantSymptoms on the bowel from endometriosis tend to occur in a regular pattern, usually worsening in the days leading up to and during a period.Dyschezia is the medical term for chronic bowel problems and symptoms include- pain on opening your bowels
- painful bowel movements
- bowel incontinence
- painful bloating and flatulance.
Cyclical dyschezia, associated with endometriosis on the bowel, often affects the lower part of the intestines where endometrial-like tissue can be superficial or deep infiltrating and symptoms can include- profoundly painful bowel movements, often described as sharp, stabbing, shooting, or razor-blade-like pain deep in the rectum or pelvis during defecation
- profoundly painful bloating and flatulance
- severe constipation and a feeling that you cannot empty your bowels fully in the days leading up to your period
- painful diarrhoea and an occasional urgent need to evacuate your bowels suddenly during your period
How much were you affected by problems associated with your bowels?
Dyspareunia is the medical term for pain experienced during sexual intercourse. Deep dyspareunia goes beyond superficial discomfort and describes pain experienced deep internally within the pelvic area during or after sexual intercourse, often triggered by deep thrusting, and can be linked to a number of medical conditions.How would you describe your experiences of deep internal pain or discomfort within your pelvic area during or after sexual intercourse?
For women aged thirty-five or under, having regular unprotected sex every two to three days should result in pregnancy within one year. After the age of thirty-five fertility declines naturally due to reduced egg quality and quantity.
Within the context of endometriosis and certain other conditions that it can share symptoms with, reasons for difficulty conceiving may include- endometriosis causing damage to ovaries, blocking or damaging fallopian tubes, and reducing egg quality or quantity
- adenomyosis hindering embryo implantation
- pelvic inflammatory disease causing scarring and damage to the fallopian tubes so preventing the egg from travelling to the uterus
- polyendocrine metabolic ovarian syndrome causing ovulatory disorders and preventing the regular release of eggs
- uterine fibroids that can interfere with embryo implantation or block fallopian tubes.
If you are trying to conceive then how would you describe your current status?
Adenomyosis is a chronic gynecological condition where patches of endometrial-like tissue grow into the muscular uterine wall rather than lining it. This leads to a thickened uterus and these patches, also known as implants, respond to hormonal changes and cause severe bleeding during menstruation.
The core symptoms of adenomyosis are those that are less associated with other conditions and include- the inside of the uterus growing thicker and bigger, not something that usually happens with endometriosis, and leading to a bulging symmetrically-shaped abdomen that is often at its worst during menstruation when the uterus is engorged with blood
- chronic pelvic pain that can be described as being similar to labour contractions
- in a healthy uterus, contractions are orderly, but in an adenomyotic uterus the invasion of endometrial-like tissue into the muscle wall disrupts this process, often leading to excessive or uncoordinated and erratic contractions
- symptoms that significantly worsen during menstruation as displaced endometrial-like tissue within the uterine muscle walls thickens, breaks down, and bleeds causing severe inflammation, pain, and heavy clotting periods
- extreme fatigue to the point of physical exhaustion.
In terms of their adverse impact on your quality of life and ability to work or study, how would you describe the influence of core symptoms of adenomyosis?
Adenomyosis can trigger severe, labour-like uterine contractions that are often more frequent, intense, and uncoordinated than would typically be expected.
Symptoms of uterine contractions associated with adenomyosis include- severe and chronic pelvic pain that can be described as being similar to labour contractions. This can be caused by misplaced tissue bleeding within the muscle wall of the uterus during a period and unable to escape
- the smooth muscle of the uterus tightening abnormally and causing intense cramping. This can be caused by the ectopic endometrial-like tissue producing higher levels of prostaglandins, hormone-like fatty compounds compounds produced by tissues throughout the body in response to injury, infection, or to regulate inflammation but that can cause pain and inflammation when produced in excess
- an increase in retrograde contractions disrupting the normal, efficient movement of the uterus. These are rhythmic movements of the inner third of the uterine muscle that propagate from the cervix toward the the top of the uterus
- hyperperistalsis, where the abnormal tissue causes the uterus to become enlarged, thickened, and irritable, leading to erratic, high-amplitude contractions
- dysperistalsis, where the abnormal tissue causes the uterus to become enlarged, thickened, and irritable, leading to ineffective contractions.
To what extent have you experienced uterine contractions that are not related to pregnancy and fit a pattern associated with adenomyosis?
An “adenomyosis belly” describes a pronounced bulge in the lower abdomen that typically resembles a small pregnancy bump of three to six months but that is not caused by soft fat-based abdominal weight and is not linked to pregnancy. Unlike cyclical bloating, this swelling does not go away after a period.
An adenomyosis belly is driven by the actual physical enlargement and structural thickening of the uterus wall itself, whereas an endometriosis belly is primarily driven by gastrointestinal inflammation, gas, and fluid retention caused by tissue growing outside the uterus. These two conditions are closely related and frequently coexist but their underlying mechanisms, physical sensations, and accompanying symptoms differ significantly.Symptoms of an adenomyosis belly can include- a structurally centralised and symmetrical bulge in the lower abdomen that resembles a small pregnancy bump and does not go away with a change in diet
- the abdomen feeling hard to the touch, sometimes with significant tenderness
- a profound sensation of pelvic fullness or dead weight
- severe bloating and a constant, heavy or pressurised feeling in the lower abdomen
- exceptionally heavy periods with large blood clots and intense vice-like uterine cramping
- direct physical pressure on nearby pelvic organs leading to frequent urination or a feeling that the rectum is blocked
- clothes feeling tight around the waist regardless of the existance of any other weight gain.
If your body matches the symptoms of an adenomyosis belly then how would you describe its appearance and discomfort level?
Endometriosis is a chronic whole-body inflammatory disease where patches of endometrial-like tissue - true endometrial tissue being the mucous membrane that lines the uterus - grow outside the uterus, most commonly implanting on the pelvic lining, ovaries, fallopian tubes, and uterosacral ligaments, the thick bands of connective and smooth muscle tissue on the outer surface of the uterus that connect the lower part of the uterus to the base of the spine.
The displaced tissue goes through the same cyclical hormonal changes of thickening and bleeding as the womb lining but has no way to leave the body, resulting in inflammation, swelling, and scarring. Whilst not every woman experiences symptoms in the same way, endometriosis is often marked by a persistant pelvic pain that is present most days and whose intensity acutely increases, possibly to the point of becoming “bone-deep”, in the days before and during a period. The pain frequently worsens over time.The peritoneum is a thin and smooth continuous membrane that lines the abdominal and pelvic walls and covers most of the abdominal organs. It serves to provide structural support and reduce friction between organs through lubrication, provide pathways for blood vessels and nerves, and acts as a barrier to defend against infection.Symptoms of peritoneal endometriosis can include- significant pelvic pain, far more severe than normal menstrual cramping, that may begin days before bleeding starts and can persist throughout the entire menstrual cycle
- ovulation pain felt specifically during the middle of the menstrual cycle
- pain and numbness, heaviness, weakness, or cramping that radiates down below the waist and that worsens during menstruation
- extreme fatigue to the point of physical exhaustion.
In terms of their adverse impact on your quality of life and ability to work or study, how would you describe the influence of symptoms associated with peritoneal endometriosis?
Deep infiltrating endometriosis affects structures in the pelvic and abdominal region such as the bowel, bladder, nerves and blood vessels. It is more likely to cause significant symptoms usually associated with the structure it is buried into and commonly peaks around the time of a period.
Symptoms of deep endometriosis can include- problems with the bladder and urinary control that align with your menstrual cycle
- problems with the bowel, including painful bowel movements, episodes of diarrhea and constipation, painful bloating and flatulance that align with your menstrual cycle.
Diseased tissue can grow on or near peripheral pelvic nerves and the lesions can directly attack nerves or create scar tissue, known as fibrosis, that pulls and traps the nerves. The release of inflammatory chemicals such as cytokines and prostaglandins can cause further pain increases and affected nerves include- sciatic nerve, causing pain in the buttocks and radiating down the leg through the thighs and calves
- pudendal nerve, leading to pain in the pelvic floor and in the perineum, the region of sensitive skin and muscle located between the vaginal opening and the anus that serves as a support anchor for pelvic floor muscles
- obturator nerve, causing inner thigh numbness or tingling
- hypogastric plexus, affecting the bladder, bowel, and sexual function with symptoms including intense pelvic pain, leg pain known as cyclic sciatica, numbness known as foot drop, painful urination and bowel issues.
In terms of their adverse impact on your quality of life and ability to work or study, how would you describe the influence of symptoms associated with deep infiltrating endometriosis?
A “frozen pelvis” is a severe and often debilitating condition where pelvic organs lose mobility and become densely bound together, with the extensive scarring acting like glue.
The female pelvic organs - the bladder, rectum, uterus and vagina- are supported by a sling of muscles and connective ligaments. Normal flexibility allows them to automatically stretch and relax during daily movements, bathroom functions, and sexual activity without causing pain or a sensation of heaviness.The most common cause of a frozen pelvis is deep infiltrating endometriosis, and symptoms include- intense pain that is often constant or daily and debilitating rather than cyclical or limited to the period
- increased urinary urgency, frequency and pain when peeing, and possible flank pain from obstructed ureters
- extreme pain when passing stools, severe bloating, and chronic constipation often alternating with diarrhea, caused by scarring around the rectum and bowels
- severe deep-seated pain during the movement involved in sexual intercourse caused by organs being rigid and fused together so unable to glide aside
- severely impaired fertility caused by dense scarring blocking the fallopian tubes
- trapped or inflamed pelvic nerves causing radiating pain down your legs, in your tailbone, or into your lower back, sometimes making it difficult to cross your legs or sit for long periods
- a pulling or tugging sensation when twisting or walking because flexibility of the pelvic organs has been lost
- a constant “bowling ball” feeling of pelvic pressure that is not caused by soft fat-based abdominal weight and is not linked to pregnancy.
In terms of their adverse impact on your quality of life and ability to work or study, how would you describe the influence of symptoms associated with a frozen pelvis?
Extra-pelvic endometriosis affects structures outside of or distant from the pelvic and abdominal region and symptoms commonly peak around the time of a period.
Catamenial epilepsy occurs when seizures are triggered by endometriosis-including brain lesions during menstruation.Pain in the shoulder-tip can occur if a patch of diseased tissue develops under the diaphragm, stimulating the phrenic nerve, a critical motor and sensory nerve in the neck that is responsible for driving respiration by providing exclusive motor control to the diaphragm.Tissue damage can extend beyond the pelvis and affect the diaphragm, chest, and abdominal wall, especially after surgeries like C-sections, leading to possible pain or bleeding during menstruation from old surgical scars, or in areas such as the chest so causing shortness of breath or a cough which may bring up blood.In terms of their adverse impact on your quality of life and ability to work or study, how would you describe the influence of symptoms associated with extra-pelvic endometriosis?
An “endometriosis belly” describes a pronounced bulge in the lower abdomen that is cyclical and can appear suddenly, frequently occuring during menstruation or ovulation, last for hours or days, and typically resembles a pregnancy bump but that is not caused by soft fat-based abdominal weight and is not linked to pregnancy.
An endometriosis belly is primarily driven by gastrointestinal inflammation, gas, and fluid retention caused by tissue growing outside the uterus, whereas an adenomyosis belly is driven by the actual physical enlargement and structural thickening of the uterus wall itself. These two conditions are closely related and frequently coexist but their underlying mechanisms, physical sensations, and accompanying symptoms differ significantly.Symptoms of an endometriosis belly can include- the abdomen blowing up over the course of a few hours and rendering form-fitting clothes or trousers unwearable
- the entire midsection feeling raw and inflamed with severe bloating and trapped gas rather than just a feeling of pelvic weight
- severe bowel symptoms that are similar to those for irritable bowel syndrome, caused by the swelling typically being a reactive gastrointestinal response
- painful ovulation
- pain during or after sexual intercourse
- deep pelvic pain that radiates into the lower back and thighs.
In terms of the adverse impact on your quality of life and ability to work or study, how would you describe the influence of what could reasonably be described as an endometriosis belly?
Empathy describes the ability to relate to another person on a deeper emotional level and it forms a vital part of social connectedness.
Cognitive empathy requires intellect and a conscious effort to try to understand another person's emotions and guess reasonably accurately what they are thinking or feeling and, importantly, why.Emotional empathy describes the ability to share another person's emotional experience and is sometimes described as “feeling what they feel”. It is typically founded on the person's individual experiences of similar emotions or situations, and examples include- being able to recognise then feel the same emotion as the other person
- feeling distress in response to the other person's pain
- feeling compassion towards the other person and a willingness to help them
- understanding when emotional empathy is the appropriate emotion or skill to use.
How would you describe your level of emotional distress as a result of any lack of empathy from family or friends for your suffering?
Medical gaslighting, also known as illness invalidation or symptom invalidation, occurs when healthcare professionals habitually dismiss, invalidate, or trivialise a patient's symptoms. In some cases it can lead to a patient doubting their own experiences or questioning their sanity.
Common indicators of medical gaslighting include- attributing physical symptoms to anxiety or stress without supporting evidence and telling a patient, in a variety of ways, that “it is all in your head”
- a medical professional not being familiar with a specific or complex condition so dismissing the severity of symptoms and categorising a patient's pain as normal rather that serious without conducting proper tests
- not bothering to refer to a patient's medical history or ignoring any known family history of illness
- a medical professional intentionally interrupting when a patient is trying to explain their symptoms
- patient blaming, during which a healthcare professional might describe a patient with expressions such as “over emotional”, “exaggerating”, or “attention-seeking”.
The feelings of defeat and helpnessness linked to the accumulated psychological harm of medical dismissal can lead to a patient becoming help-averse or losing trust in the medical establishment.How would you describe the level of emotion you feel as a result of what could reasonably be described as “medical gaslighting”?
Learned helplessness describes a mindset whereby a person internalises a feeling of helplessness and hopelessness when they repeatedly encounter anxiety-provoking situations that they are unable to overcome. They then start to believe that they cannot control or change things so stop trying, even if opportunities to gain control or break the negative cycle become available.
Causes can include- being subjected to strong negative reinforcements such as humiliation and ridiculing
- being seen as “won't do” rather than “can't do” and punished for unintended mistakes or labelled as inept, stupid, useless, etc
- regular or ongoing marginalisation, intimidation, and bullying.
Behavioural symptoms can include- giving up quickly, even when solutions are available
- applying minimal effort or initiative, believing it won't change the outcome
- delaying tasks or avoiding challenges altogether
- becoming passive or inactive in stressful situations
- having difficulty making decisions, even small ones
- not asking for help due to expecting refusal or believing it to be futile.
Emotional and cognitive symptoms can include- low self-esteem, exemplified by a core belief of being inept or worthless
- a lack of motivation as a result of a deep sense that trying is pointless
- being overly pessimistic and expecting the worst outcomes
- negative self-talk
- frustration and hopelessness through feeling powerless and overwhelmed
- increased risk of suffering from anxiety
- increased risk of developing depression.
Learned helplessness can lead to a significantly lower level of general functioning than a person might otherwise be capable of.To what extent do you think your self-confidence and motivation have become repressed by the accumulated psychological harm of domineering, restrictive or abusively belittling behaviour from other people towards you?
The word “resilience” is used here to describe the ability to adapt positively to the significant stressors associated with chronic disease.
The expression “silent suffering” is used here to describe the act of hiding the persistant physical and psychological distress associated with adenomyosis and endometriosis despite a reducing resilience.
Examples include- a feeling of hopelessness unique to living with adenomyosis and/or endometriosis, as if not allowed to show outward signs of pain and suffering, despite it all being very real, and bullied into silence and expected to “just get on with it!”
- submitting to taboos and negative connotations that surround the idea of discussing the menstrual cycle or periods and their being dismissed as “womens problems”
- the stigma surrounding being constantly “tired” or the sufferer finding themselves dismissed as “lazy” or “physically unfit”
- fear of not being taken seriously and told, in a variety of ways, that “it is all in your head”.
“The self” refers to an individual's concept of identity. It develops over time and is shaped by personal experiences, social interactions, and internal thought processes.Silent suffering can lead to- low self-esteem, a reduced sense of self-value and ability to manage life challenges and a depleted way of feeling about the value of your inner self as a person
- low self-confidence, a lack of trust in how you see your strengths and weaknesses or approach challenges and set goals and an eroded belief in your ability to succeed
- a significantly increased risk of anxiety and depression.
How would you describe the impact on your overall daily functioning and quality of life of what could reasonably be described as suffering in silence?
The expression “emotional dysregulation” is used here in relation to adenomyosis and endometriosis to specifically describe difficulty managing and controlling intense feelings and emotional responses that are driven in particular by chronic pain, high estrogen levels, and trauma and accumulated psychological harm from delayed diagnosis.
Internalised emotional dysregulation can manifest as behaviours such as social withdrawal, anxiety, or depression, where the distress is directed inward and may not be seem outwardly obvious and symptoms can include- frequent negative moods and crying
- refusal to engage in social activities, including a lack of interest in maintaining existing friendships or making new friends
- the loss of friends due to unpredictable or unsocial behaviour.
“Endo rage”, a visible form of externalised emotional dysregulation, which often peaks during the menstrual cycle or during flare-ups, the sudden intensification of symptoms such as severe pelvic pain, fatigue, and digestive issues that can last from hours to weeks, leading to- powerful feelings of anger or fury
- sudden uncontrollable and intense outbursts of immense hopelessness or frustration
- panic-like symptoms and obvious physical signs of heightened anxiety.
Dysregulated emotions can become increasingly crippling and can lead to struggles within the home environment and developmental delays, including substandard work or academic performance and attendance.How great would you describe the psychological damage of living with chronic disease on your ability to manage and control your feelings and emotional responses?
Psychological injury linked to living with chronic pain can lead to a deep, persistent state of low physical and mental energy in response to the body's psychological and physiological resources being overworked for an extended period of time.
Left to continue uninterrupted this level of fatigue can lead to burnout, a state of physical, mental, and emotional exhaustion following an extended episode of severe stress and physiological disruption and markers include- increased prevalence of exhaustion, depression and a potentially increased risk of suicidal ideation or intent
- increased levels of anxiety and stress, including suffering from headaches, gastrointestinal problems or physical pain
- increasingly disrupted diet, rest and sleep patterns
- noticeably increased sensory sensitivity
- increased difficulty with concentration, memory or making choices
- becoming increasingly withdrawn and isolated, possibly to the point of physically shutting down
- an increase in both the number of meltdowns and the time needed to recover from them.
An overwhelm “hangover” refers to the lingering psychological and physical effects on the body's mental and physical resources and symptoms include- profound feelings of fatigue or exhaustion
- lethargy, tiredness and sleepiness
- bodily aches and pains and muscle soreness
- trembling and shaking
- headaches or brain fog
- pain in the chest region
- gastrointestinal discomfort
- a strong desire to isolate from others
- a persistent sense of discomfort or unease.
How would you describe the amount of physical and emotional energy you are able to muster to tackle your everyday with interest, motivation and confidence?
Fibromyalgia is a chronic disorder related to a change in the way the central nervous system - the brain, spinal cord and nerves - process pain messages carried around the body.
Broad symptoms for fibromyalgia are those that are either mind or mood affecting or physiologically or anatomically broad. They can vary between individuals and are changeable so can unexpectedly improve or worsen.Common broad symptoms of fibromyalgia include- increased sensitivity to pain
- widespread pain in the joints
- a chronic constant and dull ache that occurs on both sides of the body
- generalised muscle and joint stiffness, particularly in the mornings
- cognition issues, sometimes referred to as “fibro fog”, such as
- mental slowdown or having uncharacteristic difficulty with quick thinking
- poor concentration with difficulty focusing, multitasking, or reduced attention span
- memory lapses such as forgetting appointments, conversations, or losing items
- struggling to recall learned words or using incorrect words
- disorientation such as getting lost or confused in familiar surroundings.
- difficulty getting to sleep, insomnia, restless legs syndrome, or sleep apnea
- feeling tired and waking unrefreshed, even after a long sleep
- severe fatigue, much more extreme than tiredness
To what extent have you been affected by broad symptoms of fibromyalgia?
This fibromyalgia question specifically explores female symptoms that occur within the middle-body which includes the chest, abdomen, back and pelvis.Symptoms of middle-body fibromyalgia can include- chest wall pain centred around the breastbone and ribs, and often described as intense, sharp, or stabbing
- costochondritis, inflammation of the cartilage connecting ribs to the breastbone leading to tenderness that worsens with deep breathing, coughing, or movement
- heartburn, a burning chest pain behind the breastbone caused by acid reflux that can last from minutes to hours
- pelvic pain which occurs alongside other conditions such as irritable bowel syndrome, a digestive condition that causes stomach pain and bloating
- pelvic floor hypertonicity, a where condition pelvic muscles are constantly tight, tense, or in spasm, failing to relax properly and symptomic of
- chronic pelvic pain, pelvic floor spasms or tension
- urinary issues such as increased urge to urinate or frequent urination
- bowel issues such as fecal flatus and incontinence
- dyspareunia, pelvic pain during sexual intercourse.
- pudendal neuralgia, a chronic pain condition caused by damage, irritation, or compression of the pudendal nerve in the pelvis, with symptoms including
- severe burning, stinging, electric shock-like sensations, or stabbing pain or numbness in the genitals, anus, or perineum, which typically worsens when sitting and improves when standing
- genital or rectal sensations such as numbness, tingling described as “pins and needles”, or feeling as though a foreign object is stuck in the vagina or anus.
- intense and painful periods, with falling hormone levels just before or during menstruation causing flare-ups of widespread pain, fatigue, and brain fog.
To what extent have you been affected by symptoms of fibromyalgia that were centred within your middle-body?
The circadian rhythm controls the cycles your internal body clock repeats about every twenty four hours that tell you when it is time to sleep or wake. Disruption of the circadian rhythm can both worsen and be worsened by inflammation, pain, and hormonal imbalance linked to endometriosis.
Your body tries to synchronise your sleep-wake cycle to cues from the environment, such as seasonally adjusting to when it gets light or dark outside, when you eat, and when you are physically active.
Misalignment can- affect how well you sleep
- influence when you are able to sleep
- compromise how well you function when awake.
Rate the disruption to your sleep cycle of a misaligned or interrupted body clock?
Sleep is a critical component of mental and physical health and disruption can lead to a worsening state of mental and physical quality of life.
Insomnia can surface through- inflammation, pain and anxiety linked to your menstrual cycle or lower abdomen, often worsened where pain spikes at night
- overthinking or rumination, the repetitive and persistent thinking for more than a few idle minutes that usually involves repeating a negative thought or trying to solve an evasive problem
- racing thoughts, which are fast-moving and often repetitive thought patterns that bounce around the mind uncontrollably without allowing time to fully process or complete any single thought
- intrusive thoughts, persistent unwanted, distressing and disturbing thoughts that often revolve around specific fears, themes, or concerns and can be graphically explicit or violent and upsetting
- earworms, songs or parts of songs that become stuck in your head and are difficult to dislodge.
Common symptoms include- difficulty falling asleep and staying asleep
- unsatisfying sleep and trouble waking up in the morning or waking up fatigued and unrefreshed
- excessive daytime tiredness and difficulty focusing or being motivated
- mood changes, particularly depression or being easily upset.
How would you describe the impact of disrupted sleep and any resulting tiredness on your daily functioning and emotional stability?
Being alone is the neutral physical state of being by yourself without any other person in proximity. Loneliness is a complex individually experienced and highly personal unpleasant emotional response to imagined or actual isolation and lack of social relationships.
Traumatic aloneness describes a severe form of loneliness, characterised by core emotional wounds that surface and lead to a profound sense of isolation, alienation, and disconnection from other people. It can lead to feelings of being misunderstood, unworthy, or being fundamentally different and can disrupt a person's ability to form secure relationships and trust, regardless of the availability of healthy relationships or willing company.
Symptoms can include- a persistent feeling of being alone, even when in company
- a difficult-to-ignore need to avoid social situations
- difficulty feeling positive emotions such as love and affection
- difficulty managing negative thoughts and emotions such as anxiety, sadness and depression, or fear.
- a belief in being fundamentally different to other people or not worthy of love or affection
- physical symptoms, including headaches, body aches, insomnia, or general malaise
- character conflict between a strong longing for connection coupled to an urge to be alone or push people away.
Emotional numbing can apply to both positive and negative emotions and symptoms can include- lessened or lack of emotional responses through the use of facial expressions
- a reduced ability to smile and laugh
- a sense of inner emptiness or flatness
- underlying feelings of irritability or nervousness
- difficulty accessing or experiencing positive emotions
- difficulty accessing or expressing feelings
- feeling distant or detached from other people
- preferring to be alone rather than engaging with others
- a loss of interest in doing things
- a loss of interest in favourite activities.
In terms of episodes of aloneness that included you feeling isolated, alienated, and disconnected from other people, how would you describe your experiences?
Anxiety is the internal emotional and physical state that involves persistent worry and a prolonged, internal feeling of apprehension or dread concerning imminent or imagined future events and can exist without a clear cause.
Symptoms of anxiety can include- persistent worry about potential problems or negative outcomes and exaggerating potential consequences
- dwelling on negative thoughts or events, even when they are not directly present
- difficulty with racing thoughts, concentration, memory, and decision making
- panic attacks, overwhelming rushes of intense mental and physical symptoms that come on very quickly, often without any obvious trigger, and last a few minutes.
Somatic relates to the body and physiological refers to its normal functions, processes, and mechanisms. Somatic anxiety describes the physiological response to cognitive anxiety and symptoms can be single, multiple or varying and range from mild to severe, and can include- dizzying or painful headaches
- a racing heart or chest pains
- intense breathing or shortness of breath
- abdominal pains, stomachache or an upset stomach
- uncontrollable bodily trembling or shaking
- profuse sweating, even when cold
- fatigue or weakness
- tight muscles and muscle tension
- aching in one or more groups of muscle
- panic attacks, overwhelming rushes of intense mental and physical symptoms that come on very quickly, often without any obvious trigger, and last a few minutes.
How would you describe the impact of mental anxiety and any consequent anxiety-driven physical stress on your ability to maintain a calm and balanced emotional state?
Being depressed is the normal but temporary feeling of sadness in response to occasional misery or when something goes wrong. It lasts for no more than a few hours or days before a return to relative normality.Depression is a persistent and potentially severe condition whereby a person suffers from a heavy mental state of sadness and low mood which continues without any meaningful respite for weeks or more and significantly interferes with all aspects of daily life.
Symptoms can include- being uncharacteristically weepy or crying with little or no obvious cause
- an increase in the number and severity of mood swings or becoming uncharacteristically irritable
- a lack of enthusiasm for things that would normally bring pleasure
- seeming overly tired or having less energy than usual
- expressing feelings of extreme tiredness that are actually indicators of severe emotional exhaustion and a desire to escape emotional pain.
Suicidal thoughts can arise when someone is experiencing significant physical or emotional distress, particularly where a situation feels overwhelming or difficult to see a way through. It is important to emphasise that these thoughts can change over time and that with compassionate and appropriate support people can move through periods of crisis towards safety and stability.How would you describe the impact of a persistent feeling of sadness, hopelessness, and a loss of interest in even the most basic activities on your ability to enjoy life?
Quality of life is a multidimensional and personally-subjective concept but living with chronic pain, fertility challenges, extreme fatigue and a seemingly endless sense of isolation can have a profound negative impact and lead to anhedonia, an inability to enjoy life caused by a disruption in the brain's reward system.
Areas that might help inform how you feel include- your level of satisfaction with your ability to perform your daily living activities
- the extent to which you have the opportunity to enjoy leisure activities
- the extent to which you have enough energy for everyday life
- how satisfied you are with your health
- the extent to which your psychological suffering interferes with your emotional quality of life
- the extent to which your physical pain prevents you from doing what you need to do
- the amount of medical treatment you need to function in your daily life
- how satisfied you are with your access to health services
- how satisfied are you with the support you get from health services
- the extent to which you feel that your life is meaningful
- how satisfied you are with your personal relationships
- how satisfied you are with the support you get from family and friends
- how much you enjoy the overall experience of life and everything that goes with it.
How would you describe your quality of life?
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