Moving forward 

April 2026
March 2026
February 2026

Weekly update

Hi folks

Not much has really happened this week health-wise. Just a slight wobble with my old lady, Maud. She's a cat and my zen master. She has taught me much about love, being chill, patience, just existing without a constant need for validation or approval. She's been dealing with a thyroid issue for a few years, for which, medication hasn't worked. Sometimes she stops eating. Luckily catnip works well for her and helps her appetite. 

As for me, I'm still waiting for the pelvic pain specialist who I'm pretty sure at this point is rarer than a unicorn. I've been waiting for, hmmm let's think, 4 years.... My referral keeps getting rejected. It's taken so long that I have now asked to be referred back to my gynaecologist. I feel at a loss and often it's this, mixed with a lack of MH support that drives me to the brink.

I don't even know where to start with my mental health. The local MH hospital keep telling me that I don't want help every time I ask for help. It often feels like they don't want to help. Or maybe they just don't have the services and staff to deal with anything beyond absolute crisis. 

I've not done much art lately but know it will be there when I need it.

I've been getting back into my plant knowledge and herbalism. Life has gotten expensive in the UK and good food and *(herbal) medicine is now out of budget. My plan is to make my own pain salve again* using CBD.

I'm not a qualified herbalist so can't give a full recipe but will put down the recipe for the standard massage bar, to which you can add your own blend of herbs and essential oils.

Much love 

M x

*Edited 02:43, 19/02/2026

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January 2026

Why am I not "better" yet?

This is a question that often floods my mind. And is often a question we get from others. 

But it depends on whose idea of better we are going by. Mine, or yours. And that depends on the goal of healing. I spoke a little last week about receiving a diagnosis of Borderline personality disorder (BPD) and how crushing this was for me. Over the years I have used psychology, as well as Zen Buddhist concepts, to help me to let go of some of the shame and guilt I've felt. In all honesty I think the BPD diagnosis was one more thing I didn't need on top of cancer. Speaking with nurses and other patients since cancer, my reaction seems fairly normal. I remember the oncologist telling me they'd be worried if I wasn't scared, because being scared about cancer, about possibly dying, is totally normal. 

I do not believe healing to be linear. It ebbs and flows. Sometimes we see no progress, sometimes the progress is slow, or more obvious with it's rewards. I've found using a self-care app for keeping on top of this really helpful. The one I use has journal prompts, breathing exercises, mental health quiz etc. It's really helped to learn different techniques for healing through the app. I choose to pay for the premium service as it keeps me engaged in my self-care when I'm not able to engage in therapy. For me self-care is not about bubble baths and candles, although they are a nice treat, they aren't the mainstay of my routine. For me, self care is about looking after myself: taking my medication, taking time to sit with my feelings, doing a breathing exercise daily so that it becomes muscle memory.

In the past I was able to do more, go places, see people, socialise. Now I find these things so much harder. My energy runs out faster, pain disturbs my sleeping and I am often awake in the night, only to need a nap during the day.  I'm awake no less hours, but I'm doing the day in two separate shifts. This can be difficult while visiting folks. The travel itself is exhausting, every jolt adding to my pain level, my body keeping track of each bump or sudden shift. I am more sensitive to bright lights, loud noises and smells, leading to sensory overload. This can really zap my energy and leave me feeling tired and in pain from head to toe. I'd forgotten quite how draining it was until doing it fairly recently.  I don't do it often because my body isn't up to it. I am slowly learning to make other arrangements. I am slowly learning to say "no". And that I don't need an explanation as to why I can't, or why sometimes I can. Pain is unpredictable. I am slowly learning to change how I experience my pain by slowing down and succumbing to it, which sounds bleak but isn't. Personally I have found it liberating as I am listening to my body more and making changes for it's needs. This can be conflicting to other people's needs and opinion of me. But they don't have to live in my body, with the exhaustion that comes from chronic illness, and from cancer. I have had to learn to live at the pace of my body, and I've had to accept that that fluctuates constantly. Going against my body just causes unnecessary resistance, leading to pain and exhaustion.

I set very high goals. Only to feel like I have failed. This tendency toward perfectionism is something I have been trying to let go of, but like many things in life it has been slow and arduous. A great chapter in Jeffrey Marsh's book "Take your own advice" talks of this very subject and helps the reader to forgive themselves for these habits rather than beating themselves up. This act of self kindness can change the whole narrative. They often repeat the sentence "you were doing the best you could, with the information you had at the time" Jeffrey Marsh (2023). Learning what my body needed after cancer was a difficult process. And I know I am still in that process. In all honesty, before I got cancer, I don't think I ever asked myself what I truly needed, what my body truly needed. I had been living in survival mode for years. I had been living with undiagnosed endometriosis for who knows how long, each month my body wearing down, with no proper place to rest between jobs. I had no idea how to take care of myself. I also had a tendency to sort other people's problems while ignoring my own. I was ill, tired and hopeless. Moving to a house for the sake of my health gave me a place to rest. Rest is still something I am working on. 

I believe that it's perfectly acceptable to need to do things differently, just because we notice that we need to. There doesn't need to be a life altering diagnosis for us to think about what our body needs to thrive. And there are so many different ways to exist. Who gets to say what is normal or acceptable?

I have accepted that my health might not improve but my experience of it can. By making space for my self and tending my needs, I can have a less painful experience. When I ignore my body, it doesn't stop, it just gets louder. Until I have to stop and tend to it and nothing else. This halts any progress and mentally puts me back months. I think society puts pressure on us to do things a certain way. But having started to experiment with different ways to heal or deal with pain, I have found that it's very personal. I think it's one of the reasons why I loved Jeffrey's book so much, as they teach the reader to TRUST THEIR INTUITION. Not necessarily an easy task.

 

I think it's easy to assume we are doing a bad job and blame ourselves for "not doing well enough", "not being well enough". I am definitely one of these people. I have worked so hard at it, and felt like I got nowhere. Then I tried not trying and that made even less progress. Maybe trying to make progress is what is stopping me from healing. Maybe I am looking at the wrong thing entirely? And it occurs to me now that maybe for me to heal, personally, I must first get rid of this notion that there is progress. 

What if we accepted our half baked selves, slightly messy and irregular shaped. Our humanness. Our Mistakes!

Would this make it easier to feel "healed"? 

 

 

with Love Mx

 

Book reference

Jeffrey Marsh "Take your own advice" (2023)

Jeffrey Marsh | Trusted Mental Health Expert for High-Functioning Growth & Healing

 

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Finding love for myself

Finding love for myself has been one of the hardest journeys I have ever knowingly taken. I know healing may or may not take the rest of my life. I no longer cling to hope that I will accomplish unconditional self-love. But I try to engage with the healing process in any way that I can. The small moments of joy and calm are worth the effort. The real task is loving myself when I feel I have failed, messed up or am overwhelmed by emotion.

My mind is often a raging sea of negative thoughts. My journey trying to heal, trying to love myself started when a friend pointed out that some of my mental health issues might be due to trauma. At first I didn't even want to entertain the thought. It took me a while to start accepting it, and I don't think I really accepted it until I was diagnosed with Borderline Personality Disorder and ADHD around the same time. (Sept-Dec 2021)

I had just been diagnosed with breast cancer(BC) (E+,HER"+) (Sept 2021). I completely broke into pieces and had a meltdown in the oncologists office. Life had just started getting good, after years of dealing with my endometriosis(EMS). But the last month before my BC diagnosis I had felt like something was off. I couldn't put my finger on it but I wanted to stop the treatment. And then I found the lump. I felt guilty. I felt like it was my fault for doing such a risky treatment for my EMS. My mind went to a very, very dark place.

My breast cancer nurse softly guided me to the mental health team. I don't really remember what happened that day. The staff knew me but I couldn't place them. The room wouldn't stop spinning. My head fuzzy. I honestly don't remember if it was this same day that I saw the psychiatrist. Or whether they gave me another appointment. But I do remember walking into that appointment with said psychiatrist thinking I was going to a therapy session with a counsellor. The psychiatrist had made up their mind pretty quickly about a diagnosis of borderline personality disorder(BPD). I was crushed. This felt like the worst possible outcome. I didn't even realise I was being assessed.

I didn't want to accept it. I still don't. Accepting this part of me is so very difficult. But necessary to heal. The more I reject it. The more I mess up. 

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Trying to find the flow

Hi and welcome.

If I'm honest I've not known how to start this blog. What am I even writing about? I have felt that I want to complete the patient experience section first, so that it's there as a reference. However, I think it's best not to assume people have read it first, or to remember.

I think talking about my experience of endometriosis and breast cancer might be of use to someone. But my brain is drawing up blanks. I could give you a play by play of what happened, surgery, chemo, radio-therapy.... but details and emotions seem to be missing from the account. Not because I wasn't emotional! I was an emotional wreck. But because a lot of my memory of my experiences from those few years is blank, void, gone from the memory bank. So how do I talk about it? Do I even want to drag up the past when my brain has so lovingly kept me safe from the pain of that experience? My mind wavers between yes, maybe and no. It was my therapist who mentioned that maybe it was my brains way of protecting me. Maybe in time the memories will come back. Maybe they won't.

So where am I at now?

If I'm honest I feel somewhat lost on that one too. Healing from breast cancer, still. Not knowing what is the way forward but knowing that my interest in alternative healing is something I want to investigate. I think if my mind and body are pulling me in a certain direction, I should follow. Listening to my body wasn't easy and I have a suspicion that my endometriosis may have gotten worse recently. Although I'm completely at a loss as to how to move forward. My GYN is not able to operate on the thoracic endo. I respect him for being honest.

So how do I move forward. And in which direction. Is there an approach that can alleviate my pain? And what does this approach look like?

Western medicine saved my life. 

But, it has also made me sick. 

I was put on codeine at the age of 22. and I have been on and off of it ever since. I am tired of using a painkiller that does nothing for my pain, but keeps me addicted. I will be honest that I have used Cannabis for my endo since the age of 16. It's the only painkiller that has ever erased my pain completely. 

I'm in the process of coming off he codeine again. This time I hope it sticks. I have asked for help from the musculoskeletal team to help me with my pain, pacing and day to day tasks. I'm still healing from trauma and trying to process everything that has happened. 

I'm learning to accept myself. To turn the self abuse into love and be my own protector. It's probably one of the hardest things I'll ever do.

I think at this time I need guidance, and that engaging in therapy again would be helpful. I would also like to investigate more alternative therapies. 

I've come to realise that healing isn't linear. It seems to go in spirals. Each time taking you back to the start of the trauma. Each time gaining more knowledge. 

Each time I notice the fear building in my body, I remind myself, "drop your shoulders", "breathe into your body", "focus on the breathe". 

So maybe at this time, everything is a little unknown. But that's okay. I can only go at the pace of what my body allows, and the pace of the medical staff helping me. At the moment, it's pretty slow. But hopefully as I start the pain exercises I can build some more trust in my body. And start to be more present.

 

Much Love 

Mx

 

*edit: I should mention, for clarity. Yesterday was spent in A&E, due to a strange lump on my leg. I am on medication that can cause clots so I calmly called 999 and got through to the ambulance service who told me to make my way to A&E. I made sure to get a lift to the hospital. The doctor ran a D-dimer test and everything came back normal. In retrospect, it looks like a weird bruise, another I do not remember getting. But probably nothing serious. I am, however, glad that I checked it out.

I believe there is a time and a place for hospital treatment. When it comes to life saving care they are excellent. However, when it comes to living with long term illness, it has often failed me. I have lived with Endometriosis long enough that I am willing to look for other options for care. This will be my journey discovering what works for me, and what doesn't.

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My Patient Experience 

Blog :  Medical definitions and symptoms

Adenomyosis

"Adenomyosis – the presence of endometrial glands and stroma WITHIN the myometrium. The myometrium is the medical term for the muscular portion of the uterine wall. This is a uterine disease. Focal adenomyosis is an adenomyoma." The Endometriosis Summit: E-book definitions 

https://theendometriosissummit.com/wp-content/uploads/2023/10/Endo-Definitions.pdf

ADHD

"Attention-Deficit/Hyperactivity Disorder 

Diagnostic Criteria 

A. A persistent pattern of inattention and/or hyperactivity-impulsivity that interferes with functioning or development, as characterized by (1) and/or (2): 

1. Inattention: Six (or more) of the following symptoms have persisted for at least 6 months to a degree that is inconsistent with developmental level and that negatively impacts directly on social and academic/occupational activities: 

Note: The symptoms are not solely a manifestation of oppositional behavior, defiance, hostility, or failure to understand tasks or instructions. For older adolescents and adults (age 17 and older), at least five symptoms are required. 

a. Often fails to give close attention to details or makes careless mistakes in schoolwork, at work, or during other activities (e.g., overlooks or misses details, work is inaccurate). 

b. Often has difficulty sustaining attention in tasks or play activities (e.g., has difficulty remaining focused during lectures, conversations, or lengthy reading). 

c. Often does not seem to listen when spoken to directly (e.g., mind seems elsewhere, even in the absence of any obvious distraction). 

d. Often does not follow through on instructions and fails to finish schoolwork, chores, or duties in the workplace (e.g., starts tasks but quickly loses focus and is easily sidetracked). 

e. Often has difficulty organizing tasks and activities (e.g., difficulty managing sequential tasks; difficulty keeping materials and belongings in order; messy, disorganized work; has poor time management; fails to meet deadlines). 

f. Often avoids, dislikes, or is reluctant to engage in tasks that require sustained mental effort (e.g., schoolwork or homework; for older adolescents and adults, preparing reports, completing forms, reviewing lengthy papers). 

g. Often loses things necessary for tasks or activities (e.g., school materials, pencils, books, tools, wallets, keys, paperwork, eyeglasses, mobile telephones). 

h. Is often easily distracted by extraneous stimuli (for older adolescents and adults, may include unrelated thoughts). 

i. Is often forgetful in daily activities (e.g., doing chores, running errands; for older adolescents and adults, returning calls, paying bills, keeping appointments). 

2. Hyperactivity and impulsivity: Six (or more) of the following symptoms have persisted for at least 6 months to a degree that is inconsistent with developmental level and that negatively impacts directly on social and academic/occupational activities: 

Note: The symptoms are not solely a manifestation of oppositional behavior, defiance, hostility, or a failure to understand tasks or instructions. For older adolescents and adults (age 17 and older), at least five symptoms are required. 

a. Often fidgets with or taps hands or feet or squirms in seat. 

b. Often leaves seat in situations when remaining seated is expected (e.g., leaves his or her place in the classroom, in the office or other workplace, or in other situations that require remaining in place). 

c. Often runs about or climbs in situations where it is inappropriate. (Note: In adolescents or adults, may be limited to feeling restless.) 

d. Often unable to play or engage in leisure activities quietly. 

e. Is often “on the go,” acting as if “driven by a motor” (e.g., is unable to be or uncomfortable being still for extended time, as in restaurants, meetings; may be experienced by others as being restless or difficult to keep up with). 

f. Often talks excessively. 

g. Often blurts out an answer before a question has been completed (e.g., completes people’s sentences; cannot wait for turn in conversation). 

h. Often has difficulty waiting his or her turn (e.g., while waiting in line). 

i. Often interrupts or intrudes on others (e.g., butts into conversations, games, or activities; may start using other people’s things without asking or receiving permission; for adolescents and adults, may intrude into or take over what others are doing). 

B. Several inattentive or hyperactive-impulsive symptoms were present prior to age 12 years. 

C. Several inattentive or hyperactive-impulsive symptoms are present in two or more settings (e.g., at home, school,or work; with friends or relatives; in other activities). 

D. There is clear evidence that the symptoms interfere with, or reduce the quality of, social, academic, or occupational functioning. 

E. The symptoms do not occur exclusively during the course of schizophrenia or another psychotic disorder and are not better explained by another mental disorder (e.g., mood disorder, anxiety disorder, dissociative disorder, personality disorder, substance intoxication or withdrawal). " DSM-V

https://www.academia.edu/87962793/DSM_5_TR_English_?auto=download

 

 

Borderline personality disorder

Borderline Personality Disorder
DSM -V Diagnostic Criteria


"A pervasive pattern of instability of interpersonal relationships, self-image, and affects, and marked impulsivity, beginning by early adulthood and present in a variety of contexts, as indicated by five (or more) of the following:
1. Frantic efforts to avoid real or imagined abandonment. (Note: Do not include suicidal or self-mutilating behavior covered in Criterion 5.)
2. A pattern of unstable and intense interpersonal relationships characterized by alternating between extremes of idealization and devaluation.
3. Identity disturbance: markedly and persistently unstable self-image or sense of self.
4. Impulsivity in at least two areas that are potentially self-damaging (e.g., spending, sex, substance abuse, reckless driving, binge eating). (Note: Do not include suicidal or self-mutilating behavior covered in Criterion 5.)
5. Recurrent suicidal behavior, gestures, or threats, or self-mutilating behavior.
6. Affective instability due to a marked reactivity of mood (e.g., intense episodic dysphoria, irritability, or anxiety usually lasting a few hours and only rarely more than a few days).
7. Chronic feelings of emptiness.
8. Inappropriate, intense anger or difficulty controlling anger (e.g., frequent displays of temper, constant anger, recurrent physical fights).
9. Transient, stress-related paranoid ideation or severe dissociative symptoms...

...The essential feature of borderline personality disorder is a pervasive pattern of instability." DSM-V, American Psychiatric Association (2022) ( downloaded from DSM-5 TR [English])

Breast cancer

"Breast cancer is a disease in which abnormal breast cells grow out of control and form tumours. If left unchecked, the tumours can spread throughout the body and become fatal.

Breast cancer cells begin inside the milk ducts and/or the milk-producing lobules of the breast. The earliest form (in situ) is not life-threatening and can be detected in early stages. Cancer cells can spread into nearby breast tissue (invasion). This creates tumours that cause lumps or thickening. 

Invasive cancers can spread to nearby lymph nodes or other organs (metastasize). Metastasis can be life-threatening and fatal." World Health Organisation Website Breast cancer

Types 

"Not all breast cancers are the same. They are often categorised based on where they start and how far they have spread. 

Invasive Breast Cancer: This occurs when cancer cells have left the ducts or lobules and invaded the surrounding fatty tissue.  

The most common form of breast cancers is: 

  • NST (No Special Type): The most common, formerly called invasive ductal carcinoma. Where cancer cells break through ducts into surrounding breast tissue (it accounts for around 70% of all invasive breast cancers). 
  • Invasive Lobular: Originates in milk-producing glands and spreads outward. 
  • Inflammatory Breast Cancer: Rare, aggressive and causes redness, inflammation and swelling as the breast cancer cells block lymph vessels. 
  • Paget’s Disease of the Breast: Rare, causes change to the skin of the nipple and looks like eczema. 

Non-invasive Breast Cancer: This is an early stage where cancer cells are still contained within the ducts or lobules and haven't spread to the surrounding tissue.  

  • DCIS (Ductal Carcinoma in Situ): Cancer cells are confined within ducts. If left untreated DCIS may become invasive. 
  • LCIS (Lobular Carcinoma in Situ): This type is not cancerous (so does not spread), although its presence is correlated with an increased chance of developing cancer. " Breast Cancer Now What is Breast Cancer? | Breast Cancer UK

Hormones (Estrogen, Progesterone) and HER2

"Breast cancer can be broken down based on specific proteins and characteristics, such as whether it's fueled by hormones; oestrogen (ER+) and progesterone (PR+) or a protein called human epithelial growth factor 2 (HER2). This classification is crucial because it helps doctors choose the most effective treatment (for example lowering or blocking these hormones and proteins to help slow the growth of the tumour). About 80% of breast cancers have oestrogen receptors (ER+). 

The most common markers are: 

  • ER+ / PR+ (hormone receptor-positive): Some breast cancer cells have special 'receptors' on their surface. When these hormones bind to the receptors, they can make the cancer cells grow and multiply. This means that the cancer’s growth is partly fueled by these hormones.  
  • HER2+: Some people have higher than normal levels of this protein which promotes tumour growth. 
  • Triple-Negative: No specific 'growth accelerators' like the known receptors or proteins, which means this type is often more aggressive and harder to treat. It is more common in younger women. " Breast cancer now What is Breast Cancer? | Breast Cancer UK

Symptoms 

"Skin changes such as puckering or skin dimpling

Puckering or dimpling means an uneven texture on the breast or chest that looks like orange peel.

Unusual lump or swelling in your armpit or around your collarbone

As well as the breast and chest, it’s also important to check your upper chest and armpits too. These areas can also be affected by breast cancer. If you notice an unusual lump or swelling in these areas, then you should see your GP.

Unusual lumps and thickening

If you get to know how your chest feels normally by checking monthly, it will be easier to notice any unusual changes. These might be new lumps or one part of your chest starting to feel thicker than the rest.

Liquid coming from your nipple

You may hear this liquid being called discharge. The liquid or discharge could be yellow, clear, white, green or bloody. This may be nothing serious, however it could be a sign of breast cancer or a breast cyst (a lump of fluid or pus).

Crusting or a rash on your nipple or around your nipple

There are lots of reasons why your skin could become irritated, especially if you are breastfeeding. You should get this looked at if you notice a change in colour (*your skin tone can affect how this looks). If you notice a rash or crusting skin on or around your nipple you should also see your GP.

*On Black skin, the area may go darker than the surrounding area. You may notice small spots in the area or changes in the colour, like purple, yellow or grey. 

On Brown skin, the colour change may be more of a dark red. The area may also go darker than the surrounding area.

On white skin, the colour change may look pink or red.

Nipple is pulled inwards or changes direction (inverted nipple)

It is important to pay special attention to your nipple during your monthly checks. Look to see if your nipple has become pulled into your breast or pec, or looks different to usual. This could be a change in its position or shape.

Sudden change in breast size or shape

Many people naturally have one breast or pec bigger than the other. Breasts or pecs can also gradually change as you get older which is perfectly normal. However, if you notice a sudden, unusual change in the size or shape of your breast or pec, you should see your GP.

Constant, unusual pain in your breast, pec, or armpit

Pain in your breast, pec or armpit can be perfectly normal, especially around periods if you have them. If you notice a sudden and constant pain in these areas, you should go and see your GP" Coppafeel charity Breast Cancer Symptoms & Signs | CoppaFeel!

Chronic Pain

"Chronic pain is a common condition affecting over one third of adults in the UK.

Chronic pain is pain that lasts longer than 3 months in one or more parts of the body. It can cause emotional distress and can make doing daily tasks more difficult.

Chronic pain can be a diagnosed health condition on its own. It can also sometimes be a symptom of another health condition." What is chronic pain? | NHS inform

Endometriosis

Endometriosis – clinically defined as “a systemic, inflammatory disease characterized at surgery by the presence of endometrium-like tissue found outside the uterus, usually with an associated inflammatory process. It is a spectrum disease with a variety of subtypes and clinical presentations, and pain, inflammation, infertility, development of endometriomas (“chocolate cysts”), fibrosis, formation of adhesions (fibrous bands of dense tissue), GI and other organ dysfunction, and much more are common with endometriosis” (Int’l Endometriosis Working Group, 2021)

It is systemic, often painful, whole body disease in which tissue that is similar to, but not the same as, the tissue that normally lines the inside of your uterus — the endometrium — grows outside your uterus. Endometriosis can be found anywhere in the body.

https://theendometriosissummit.com/wp-content/uploads/2023/10/Endo-Definitions.pdf

 

Endometriosis: Bowel Endometriosis

"Bowel Endometriosis- 80-90% of people with endometriosis feel some sort of bowel
discomfort. Many seek out care from gastroenterologists for years with the pain attributed to
IBS or have their symptoms ignored. Others have tried elimination diets and holistic measures
that may help, but are not eliminating their symptoms. Unfortunately, bowel endometriosis is
rarely embraced as the cause of these symptoms despite that bowel endometriosis is fairly
common. Typically, bowel endometriosis will be on the outside of the bowel, not inside the
lumen, making it hard to detect during colonoscopies. Additionally, bowel endometriosis can be
subtle making detection on scans difficult or bowel endometriosis can be deeply invasive,
creating adhesions that bind the bowel. Bowel endometriosis symptoms may worsen with the
period but many experience symptoms all month long.
Symptoms of bowel endometriosis can include (but are not limited to):
•Bloating or Endo Belly
•Pain and pressure in the abdomen
•Sensitive Stomach
•Diarrhea
•Constipation
•Pelvic Floor Dysfunction
•Difficulty passing stool
•Chronic Nausea
•Food Allergies
•Abdominal cramping and pain
•Painful bowel movements
•Vomiting" Endometriosis Summit: E-book definitions Glossary 24.pdf

Endometriosis: Bladder and Urogenital

"Bladder and Urogenital Endometriosis -it is estimated that up to 80% of people with endometriosis
have disease surrounding the ureters and the urogenital system. Bladder and urogenital
endometriosis are one of the most misdiagnosed forms of endometriosis. People with
endometriosis related bladder issues are often normalize their pain, thinking they just
have a small bladder or that getting up at night to go to the bathroom is normal. They are often
told they have recurrent infections, or that they have interstitial cystitis (IC). Similar to bowel
endometriosis, bladder endometriosis is typically on the outside of the ureters or bladder
making it undetectable during a cystoscopy. Furthermore, the bladder itself is a sensory driver to
the pelvis, so once pelvic pain is present bladder pain can ensue. Bladder pain and endometriosis
are so common the two are thought of to be the “evil twins” of pelvis pain. Symptoms of bladder
and urogenital endometriosis include (but are not limited to):
•Urinary urgency
•Urinary frequency
•Urinary burning
•Lower abdomen pain above the pubic bone
•Bloating
•Leg pain
•Constipation
•Pain with a full bladder
•Pelvic floor spasms
•Food sensitivities
•Painful sex
•Back or flank pain
•UTI symptoms with negative culture" Endometriosis Summit: E-book definitions Glossary 24.pdf

Endometriosis: Lung and Diaphragmatic

"Diaphragmatic and Lung Endometriosis- the respiratory system is among the top five systems
affected by extra-pelvic endometriosis Thoracic endometriosis includes endometriosis in the
diaphragm and thoracic cavity. Many people with thoracic endometriosis present with
catamenial pneumothorax, however many do not. Symptoms may initially be cyclical around
menstruation but will progress next to during ovulation and then to all month long.
Symptoms of thoracic endometriosis include (but are not limited to):
• Lung collapse
•Rib tip pain
•Burning shoulder, especially with menstruation
•GERDS or Chronic Heartburn like symptoms
•Altered oxygen saturation levels, especially during ovulation and menstruation
•Difficulty catching your breath
•Knife like pain between the shoulders
•Pain and pressure across the bra line
•Chest pain and pressure
•Neck pain and burning C3,4,5, especially during menstruation Dysmenorrhea - is characterized by
severe and frequent menstrual cramps and pain during menstruation." Endometriosis Summit: E-book definitions Glossary 24.pdf

Fibromyalgia

"The main symptom of fibromyalgia is widespread pain that might feel like:

  • an ache
  • a burning sensation
  • a sharp stabbing pain
  • a mixture of these 3 feelings

The pain is likely to be continuous, but it might be better or more severe at different times.

As well as widespread pain, people with fibromyalgia might also have:

  • increased sensitivity to sensations like touch, light, temperature, noise
  • fatigue (extreme tiredness)
  • muscle stiffness
  • difficulty sleeping
  • problems with mental processes (known as “fibro-fog”) – like problems with memory and concentration
  • headaches
  • irritable bowel syndrome (IBS) – a digestive condition that causes stomach pain and bloating
  • dizziness and clumsiness
  • feeling too hot or too cold
  • restless legs syndrome
  • tingling, numbness, prickling or burning sensations in your hands and feet (pins and needles, also known as paraesthesia)
  • unusually painful periods (if you get periods)
  • anxiety
  • depression" NHS inform Fibromyalgia | NHS inform

 

"Common Fibromyalgia Symptoms...

     ...Fibromyalgia affects everyone differently because we are all different, but here are some common symptoms that many people share:

  • Widespread pain – aching, burning, throbbing, stabbing sensations
  • Fatigue – that bone-deep tiredness that doesn’t go away with rest
  • Fibro fog or "brain-fog" – trouble thinking clearly or remembering things
  • Cognitive difficulties - slow thought processes, memory problems, lack of concentration or inability to find the right words
  • Balance issues - vertigo, dizziness, clumsiness
  • Poor sleep – waking unrefreshed or not sleeping at all
  • Sensitivity – to touch, sound, light, temperature and environmental conditions
  • Stiffness – especially first thing in the morning, joints and muscles
  • Migraines or frequent headaches
  • Digestive problems or Irritable Bowel-like symptoms – bloating, cramping, irregular bowels
  • Anxiety or low mood – because managing constant symptoms is exhausting" Fibro.org About Fibromyalgia - Fibromyalgia Support Group UK | Fibromyalgia Friends Together

Definitions for adenomyosis and endometriosis from the Endometriosis summit e-book -

https://theendometriosissummit.com/wp-content/uploads/2023/10/Endo-Definitions.pdf

 

Definitions for ADHD and BPD from the DSM-V- https://www.academia.edu/87962793/DSM_5_TR_English_?auto=download

 

Breast cancer definition references: 

Breast cancer World Health Organisation

What is Breast Cancer? | Breast Cancer UK

Breast Cancer Symptoms & Signs | CoppaFeel!

 

Fibromyalgia definition references:

About Fibromyalgia - Fibromyalgia Support Group UK | Fibromyalgia Friends Together

Fibromyalgia | NHS inform

 

Chronic pain reference

What is chronic pain? | NHS inform