Health issues other than heavy, painful periods that could be attributed to endometriosis, especially if they are currently unexplained or you're not satisfied with the explanations you've been given. A thread:

First, some housekeeping; these symptoms & health issues are not unique to endometriosis or even gynaecological conditions in general. Endometriosis is often identified by a combination of symptoms rather than just one & these symptoms range from almost unnoticeable to severe.

Many people with endometriosis don't realise they have it because their symptoms are either so mild or they've never known life without those symptoms so they've adapted to them. On the other end of the spectrum you have people whose lives are significantly impacted by it daily.

Endometriosis can currently only be diagnosed by a laparoscopy, a surgery where they insert a camera into your stomach. However, it is possible to detect indicators such as endometriomas (cysts formed due to endo on the ovaries, these are different from functional ovarian cysts.)

If you suspect you have endometriosis, my advice would be to first seek out local support groups who can recommend good doctors in your area (both private & NHS) as many service-users are frequently dismissed even by gynaecologists.

My next recommendation would be to visit the @EndometriosisUK website & download the pain & symptoms diary, the consultation questionnaire & their 'getting diagnosed' pdf. Fill these out & take them to your GP when you ask for a referral to gynaecology. https://endometriosis-uk.org/getting-diagnosed-endometriosis

If your GP refuses to refer you to gynaecology, you can do three things:
1) book another appointment & ask for a second opinion
2) ask them to note down in your medical records that you have requested a referral & that they have denied you
3) then request your medical records

If you get a gynaecology referral you should take the same forms with you, even if you're going to a recommended gynaecologist, make sure you've made a copy of them. Repeat the three steps above if your gynaecologist then refuses to investigate further.

Every symptom listed from this point on can be present with or without menstruation.

First, here's some indicators of endo that people generally know about but most don't:
- pain &/or bleeding during & after sex/masturbation
- pain &/or bleeding during & after orgasm

- reduced libido
- pain &/or bleeding when inserting menstrual products
- excessive pain &/or bleeding during a cervical screening or other pelvic exams
- ovulation pain

Covert indicators of endometriosis:
- IBS
- intolerances to certain foods, red meat & dairy are two common groups that trigger pain & other reactions
- pain in the bladder &/or vulva when urinating
- pain in the lower abdomen during bowel movements
- urinary/bowel incontinence

- overactive pelvic floor
- chronic urinary tract infections, bacterial vaginosis & other similar recurring conditions
- recurring pelvic inflammatory disease
- recurring ovarian cysts not previously ID'd as endometriomas
- chronic fatigue
- anaemia
- gynaecologic haemorrhaging

- chronic nausea
- nerve pain/nerve damage of areas where chronic pain is experienced
- I have definitely forgotten some stuff & will add to this thread accordingly

Types of pain:
Endometriosis can cause recurring pain flare-ups &/or chronic pain that can affect every part of the body. But some areas are easier to attribute to endometriosis than others. This pain can be present both on & off your period, but considerably worse during.

To elaborate some more on this diagram, certain areas or types of pain can indicate endometriosis.
- pain in the vulva & lower abdomen, especially either side of the vulva/at the top of your thighs, this is indicative of ovarian pain, as is lower back pain.
- sciatic pain

- the line across the upper abdomen indicates pain which is usually but not always accompanied by bloating & other gastrointestinal issues, heartburn, acid reflux etc.

Weird times you might experience pain in these areas:
- on the toilet
- during sex
- during exercise
- after being on your feet for a while
- after doing housework
- after sitting at your desk
- after lying in bed for too long
- literally just living your life

Immune system links:
Endometriosis is not recognised as an autoimmune disease but it does affect your immunity & may increase the risk of autoimmune diseases & autoimmune diseases may increase the risk of endo, it's not currently known which way round it is & may be both.

Mental health links:
Cuz of how hormones & endometriosis interact, many people with endometriosis find their MH is worse during ovulation & when premenstrual. Many experience anxiety, depression & premenstrual dysphoric disorder. PMDD can exist on its own: https://www.mind.org.uk/information-support/types-of-mental-health-problems/premenstrual-dysphoric-disorder-pmdd/about-pmdd/

Rarer forms of endometriosis:
Endometriosis has been recorded in the lungs, diaphragm, brain, the nervous system & even the eyes & nasal cavity.
Whilst indicators for these forms of endo are also present daily, they become even more symptomatic just before & during menstruation.

Lung indicators:
- asthma-like symptoms
- breath shortness
- persistent cough
- hemoptysis (coughing up blood)
- lung collapse

Brain indicators:
- chronic headaches
- chronic migraines
- 'brain zaps'
- seizures
- difficulty with gait & walking

Nervous system indicators (specifically sciatic nerve endometriosis):
- chronic pain of the hips, buttocks, knees, legs, feet
- numbness of the same areas
- often physio resistant & 'unexplained'
- loss of movement, can even lead to paralysis

Eyes & nasal cavity:
- there have been recorded cases of people bleeding from their eyes & nose during their period, yes, really.

So as you can probably tell from the seemingly common symptoms of rarer forms of endometriosis, there are many overlapping symptoms with other conditions. The big giveaway that the underlying cause is endometriosis is when the symptoms are worse or during menstruation.

So why? Well, endometriosis occurs when tissue that mimics the tissue found in the lining of the uterus, is located outside of the uterus, but because endometriosis tissue mimics that tissue, every month, it bleeds, no matter where it is.

So pelvic region endometriosis results in blood in your pelvic cavity, causing adhesions & other issues. What's different about your lungs, eyes & nasal cavity is that the blood from the endometrial tissue has somewhere to go every month, through the nose, mouth & eyes.

So even though it's incredibly difficult to diagnose endometriosis in general & even endometriosis in these regions, the main reason for that is lack of education & understanding of the disease even in the field of gynaecology, scientists still haven't settled on causes.

It's important to bear in mind with the rarer forms of endometriosis especially, that the symptoms are very common symptoms for other conditions, even though I personally believe they're only considered as rare as they are due to lack of diagnosis rather than lack of occurrence.

What I'm trying to say is, if you get chronic migraines that are worse during your period, that's more likely to be caused by the increased water retention than it is endometriosis on the brain. So don't panic.

To round off I'd like to apologise for writing this thread at 12:45am & it being too long for me to save to my drafts. And also this:

Endometriosis can occur in people of every gender, yes, there have even been recorded cases of endometriosis in cisgender men!

Statistically though, endometriosis overwhelmingly affects people who have or have had a uterus. People who have had hysterectomies for either health or gender affirming reasons *still* have endometriosis because there is no cure.

Using gender-inclusive language for these subjects in particular is important. Did you know there's trans people in the USA who have been denied gynaecological healthcare because they've legally changed their gender, despite still having a uterus, a cervix, ovaries or endo.

And trans folk who can access gynaecological healthcare across the world overwhelmingly report that they're discriminated against or just generally made to feel shitty because of their gender when they receive this care.

Using gender inclusive language & deconstructing the idea that only cis women have this disease or need gynae care is the bare minimum we can do to support the need for global change in the medical field & wider society.

Additionally, many people of colour, especially Black people take significantly longer to get diagnosed with endometriosis or are less likely to receive a diagnosis despite reporting the same symptoms as white people. https://www.contemporaryobgyn.net/view/how-raceethnicity-influences-endometriosis

Anyway, this has been my endometriosis thread. Please share it & if you have endometriosis & you experience something that I didn't mention here & you know or strongly believe it to be related to your endometriosis, please feel free to add it to the thread.