Quick reference symptom checker:
Generalised pelvic/lower abdominal pain/discomfort that can be severe (cyclical or chronic) - burning, aching, cramping, pressure, heaviness.
Random sudden pains often associated with movement - stabbing, shooting, pulling, ripping.
Painful and/or heavy periods often with clots
Painful ovulation
Pain with and/or after sex, especially when deep, and bleeding sometimes associated
Pain with internal exams
Pain when sitting
Fatigue which can be totally debilitating and quite different from tiredness
IBS - constipation, diarrhoea, bloating (cyclical or chronic)
Pain/difficulty urinating, blood in urine, urgency, frequency
Pain with bowel movements, with or without bleeding, (cyclical or with every movement)
Partial bowel obstruction
Referred pain (lower back, legs - often predominantly the left) cyclical or chronic with difficulty walking
Infertility
Upper GI symptoms such as nausea
Cyclical shoulder pain (usually the right)
Rarely cyclical pneumothorax/haemothorax with chest pain, painful breathing
Other signs:
First degree relative with endo
Allergies (hyper-sensitivities)/intolerances
Frequent infections
Headaches, dizziness, mental confusion (CFS symptoms)
.
Bowel/rectovaginal endo:
Chronic severe abdominal pain, constipation, extreme pain with bowel movements, pencil-like stools, pain with sex more common and severe, rectal bleeding with dark blood, vaginal pain, extremely painful internal exams, pain with sitting and pain in the rectum that can feel like you’re “seated on a thorn”, shooting, stabbing pains, bloating with gas, progression of symptoms over time. A detailed history will often find that the symptoms date from the patient's first period and have been ignored or treated as primary dysmenorrhoea, often with oral contraceptives. One helpful distinguishing point is that with involvement of the rectum by endometriosis, patients frequently have pain with every bowel movement during the month, whereas patients with cul-de-sac or uterosacral ligament disease without rectal disease may complain of painful bowel movements only with menses. With US ligament endo there will often be referred pain to the lower back and legs (especially the left). Source: Jeremy Wright now retired excision surgeon from Ashford and St Peters, who founded the endo centre project.
Bladder endo:
Deep endo of the bladder is rare and symptoms can mimic superficial disease on the overlaying peritoneum which is common. Symptoms may include urgency, frequency (including in the night), painful, ineffective bladder contractions, painful bladder spasm during voiding and blood in urine. These symptoms may be cyclic and increase during menses, although some patients may have a lower level of symptoms throughout the month.
Ureteral endo:
This is usually associated with progression of deep nodular endo affecting the uterosacral ligaments. It develops silently without symptoms and can result in kidney failure. Symptoms that should raise suspicion would be flank pain (most usually left-sided) and hypertension that is often cyclical.
When considering the symptoms of endo the first thing that springs to mind is that they are seemingly infinitely diverse such that no one woman experiences the same as another, and many peculiar symptoms that are clearly shared by members on groups such as this might not even be documented anywhere in literature. But we know we have them and that they are in some way connected with our shared experience; that in itself must be some sort of evidence, but for now evidence only we can relate to until maybe, hopefully, in the fullness of time, a greater understanding will be gained within medical and public communities alike as to the far reaching effects of this disease.
But there are many documented symptoms and there is no excuse for doctors failing to identify those which could unquestionably reduce diagnostic delays and prevent endo becoming severe in so many cases causing the ruining of women’s lives in a way that could have been avoided.
So why are so many doctors and gynaecologists still not listening?
In looking at symptoms we will first consider those that medical professionals should familiarise themselves with, although it seems few do.
The most immediate reference for doctors is the NICE guideline:
nice.org.uk/guidance/ng73/r...
...but unfortunately at present (October 2023) it is worryingly lacking with regard to the symptoms of endo. At 1.3.1 it says:
‘Suspect endometriosis in women (including young women aged 17 and under) presenting with 1 or more of the following symptoms or signs:
chronic pelvic pain
period-related pain (dysmenorrhoea) affecting daily activities and quality of life
deep pain during or after sexual intercourse
period-related or cyclical gastrointestinal symptoms, in particular, painful bowel movements
period-related or cyclical urinary symptoms, in particular, blood in the urine or pain passing urine
infertility in association with 1 or more of the above.’
Although most women with suspected endo will have at least 1 of these, as we know there are many more symptoms and signs of endo. So it is recommended that you read the Introduction and Diagnosis sections of the European Guideline on the management of women with endometriosis (ESHRE). This is written for doctors and gynaecologists and gives guidance as to what they should be looking for. So effectively this will get you into their head in so far as you will know in advance what they should be considering when you have a consultation. The guideline presents the evidence that underpins the diagnostic procedure that should be followed. The ESHRE publication can be found at the link below:
eshre.eu/Guidelines-and-Leg...
There is a very important distinction to be made between gynaecological/non-gynaecological and cyclical/non-cyclical symptoms. This will no doubt be quite enlightening to the many who will have been told by many a doctor and/or gynaecologist (and even some BSGE consultants) that endometriosis only gives symptoms at period time and that symptoms are only gynaecological. In considering whether endo ‘causes’ non-cyclical and non-gynaecological symptoms then we could perhaps say that these symptoms are ‘consequences’ of endo. But this evidence confirms that such an argument is irrelevant since the diagnostic process must consider the symptoms not the cause.
So let’s gather up all these symptoms that doctors and consultants should consider suggestive of endometriosis:
Cyclical – pelvic pain, painful periods, heavy periods, cyclical IBS (constipation, diarrhoea, bloating), painful urination, shoulder pain (predominantly the right).
Non-Cyclical – chronic pelvic pain, pain with sex, bleeding after sex, non-cyclical constipation, rectal bleeding, painful urination, blood in urine, referred pain (back, legs), fatigue, infertility.
Plus previous diagnoses of IBS and pelvic inflammatory disease.
There may sometimes be an overlap between cyclical and non-cyclical symptoms such as cyclical rectal bleeding or non-cyclical bloating. There may also be symptoms not listed such as ovulation pain and urinary frequency. But these ‘official’ symptoms give us more than enough to go on in presenting a case.
In order to understand why there should be cyclical and non-cyclical symptoms let’s consider the causes of each.
Cyclical symptoms:
The cause of pain at period time is due to inflammation and uterine cramping. During the second half of the menstrual cycle (luteal phase) the hormone progesterone is high and this inhibits the production of pro-inflammatory proteins called prostaglandins. Progesterone also slows intestinal transit so women will often have cyclical constipation at that time. Just before a period the progesterone is suddenly withdrawn and inflammatory prostaglandins are released. There will often be sudden diarrhoea with a general pattern of alternating constipation and diarrhoea over the cycle. This series of hormonal changes applies to healthy women too and consequently some period pain may be expected and be considered ‘normal’ along with ‘hormonal IBS’ in many women. Because this sort of IBS is common it might be easy (but not excusable) to see why so many doctors automatically diagnose it in women with endo without regard to the severity of the other symptoms or associated atypical symptoms that should lead them to think outside the box. The presence of endo lesions on or near the bowel on the uterosacral ligaments causes local inflammation that irritates the outside of the bowel and causes these same cyclical IBS symptoms. Therefore, in the presence of other symptoms of endo, cyclical IBS should be considered a symptom of endo and not an unrelated waste basket diagnosis. Cyclical shoulder pain (predominantly on the right) is a symptom of endo on the diaphragm and when otherwise unexplained and associated with more typical endo symptoms must always raise suspicion of thoracic endo.
The pain mechanisms of endo are unclear but it has been found that there are considerably more nerve fibres in the endometrium of women with endometriosis, assumed to cause painful cramping, and a positive feedback loop has been identified indicating the continuous production of the prostaglandin PGE2 within endo cells themselves and local formation of oestrogen, enabling endo to feed itself through a process called aromatisation. PGE2 is the prostaglandin considered the most critical regulator in endometriosis and the major mediator of endometriosis-related pain. So this would appear to go some way in explaining why women with endo usually have much more significant inflammation and period pain than healthy women.
Non-cyclical symptoms:
As we know the inflammation of endo lesions gives rise to scar tissue (fibrosis) as the body tries to heal itself. Ordinarily, in a healthy woman, when an isolated event causes tissue damage the scar tissue (which is still in the early fibrinous stage) would usually be dissolved away by enzymes once healing has taken place. Fibrin is like glue and even if structures do attach the adhesions would usually be ‘filmy’. But because of the repeating nature of the inflammation of endo the scar tissue becomes fibrotic and dense without the chance to heal. This can be like cement, attaching and gluing internal structures together. Nerves become entrapped and this can cause excruciating pain that may be described in terms such as stabbing, shooting, ripping or twisting. Intense pain can occur suddenly with movement or turning over, in bed for example.
Dense adhesions are found in association with deep rectovaginal disease that can infiltrate structures such as the uterosacral ligaments and bowel wall. There are nerves that run along the ligaments and when these are involved there can be pain referred to the back and the sciatic nerve which may be felt in the bottom, hips, thighs/legs. Often sitting or walking for any length of time is difficult. There will usually be pain with/after sex, sometimes with vaginal bleeding. Bowel involvement may cause constipation and bleeding at any time, along with pain with every bowel movement due to nerve involvement or adhesions. Likewise bladder involvement may cause pain with urination and blood in urine at any time. Pain from dense adhesions and nerve involvement is not caused by hormones and so is not affected by the menstrual cycle although when the uterosacral ligaments, cervix and pouch of Douglas are involved the stopping of periods through hormonal medication, and thus the stopping of uterine contractions, can give relief.
A full understanding of all the above points should put you in a position to understand and describe your symptoms accurately and to challenge any attempts to write them off as IBS, PID or in your head. Take a copy of the relevant NICE and ESHRE guideline pages to your consultation and highlight symptoms that especially apply to you. If a consultant should question the validity of the guideline let them know that you know they form the underlying evidence for treatment of endo as laid out in the NICE guidelines that all consultants must follow in order to be licensed to practice.
Article shared from the file section of a reliable UK endo guidance and support group that is a stakeholder in both NICE and NHS England guidance. Search under Endorevisited.
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