Symptoms of Endo

[Lindle]

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. Note this doesn't include symptoms of very rare cases of extra pelvic endo.

QUICK REFERENCE SYMPTOM CHECKER:

Pelvic pain (cyclical or chronic)

Painful and/or heavy periods with clots

Painful ovulation

Pain with and/or after sex, especially when deep, and bleeding sometimes associated

Pain with and/or after internal examinations or coil insertions or attempts

Fatigue which can be totally debilitating and quite different from tiredness

IBS - constipation, diarrhoea, bloating (cyclical or chronic)

Painful urination, blood in urine

Pain with bowel movements, with or without bleeding, (cyclical or with every movement)

Partial bowel obstruction

Pain when sitting

Referred pain (lower back, legs) cyclical or chronic

Infertility

Cyclical shoulder pain (usually the right) and rarely cyclical pneumothorax/hemothorax

Upper GI symptoms such as nausea

Other signs:

First degree relative with endo

Allergies

Frequent infections

Headaches, dizziness, mental confusion (CFS symptoms)

BOWEL/RECTOVAGINAL ENDO:

Bowel - 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 (Pouch of Douglas) 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).

Main Source: Jeremy Wright now retired excision surgeon from Ashford and St Peters, who founded the BSGE 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 usually 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.

Shared with permission of EndoRevisited. The detailed file from which this is an extract discusses and analyses the symptoms as referred to in UK guidelines that doctors should be applying (NICE and ESHRE) and relates the 'story' of a typical endo journey and how symptoms might evolve with time and why doctors might dismiss them along the way when there were pivotal points in the journey when a diagnosis could have been made but was missed. Unfortunately files can't be shared here:

facebook.com/notes/endometr...

facebook.com/groups/1148144...

[Simo7]

Thank you for continuing to educate us. Despite having this disease for years it’s only recently that I think I’ve grasped what type I have! Thanks again

[SimplyDeeDee]

Thanks Lindle, the work and research you continue to do for us is so greatly appreciated. I also research my symptoms and share my findings with my consultants and GP. I find taking matters into my own hands and understand my condition has helped tremendously. I also travel with my own medical file to every appointment with specialists which I think is one of the best things to do.

It’s been a very very long journey; one that could have been shorter had GPs listened in the first place but I try not to dwell on that too much and continue the fight towards a better way of living.

[Thompson36]

After having Endo for over 30 years I had a full hysterectomy in Feb. During the last few years I have experienced excruciating right shoulder pain which steroid injections and regular physio haven’t helped. The ortho consultant has offered to operate by shaving some bone from my collarbone but I’m having reservations that this will help. Could it be Endo related? I also have on occasion severe pain across the shoulder blade and around the ribs.

[Lindle in reply to Thompson36]

I first had symptoms when I came off the pill at age 30, 35 years ago and went on to be undiagnosed for 25 years. I had a hysterectomy/BSO and at that time no endo was evident. In those days there were no specialists that could be identified (although some clearly existed). The surgery was by a private gynaecologist so clearly some endo could have been missed, but all my reproductive organs were clear of disease at histology.

I was put on high levels of oestrogen only HRT and developed a 13 cm pelvic mass that on ultrasound was found to have its own blood supply, so feeding itself. I was prepared for end stage aggressive ovarian cancer, presumed from a remnant. It turned out to be the rare aggressive form of post menopausal endo caused by oestradiol only HRT. This was treated by a private gynaeoncologist and confirmed as endo. He was unable to remove it all.

Symptoms continued and I researched online for anyone who sounded to have skill in endo - there was no BSGE list then. I knew my kidneys were at risk of failure as I had symptoms of ureteral endo - flank pain and hypertension. I got all my medical records (a pile around a foot thick) and sent a detailed history to six or so and all replied wanting to treat me except, interesting, who I assume to be your surgeon. l did actually go to see him due to being closest to me, but unfortunately I had a negative experience so looked elsewhere. I decided on the wonderful Mr Trehan and had 8 hours of meticulous excision to include extensive adhesiolysis, bilateral ureterolysis, shaving of the bladder and excision of the entire posterior pelvic peritoneum to get any microscopic peritoneal endo as the mass had ruptured 5 times and splattered my peritoneum. I have been completely pain free for 10 years now.

In someone with endo, unexplained right shoulder pain is a symptom of diaphragmatic endo that shouldn't be ignored. He should have thoroughly inspected it but might not have done.

[Thompson36 in reply to Lindle]

Should I stick with ortho or be speaking to someone else? Feels like I’m being blocked by the GP’s as being a difficult patient and that there is nothing they can do. Having a range of symptoms that no one wants to look into, irritation of the vegus nerve which keeps causing palpations. Severe right breast pain which keeps being brushed off over the last 3 years so wasn’t sure if the shoulder was referred pain from the breast or the shoulder causing the breast pain. Breast clinic said mammogram was fine and pain was muscoskeletal whereby ortho are saying the breast pain isn’t being caused by the shoulder. GP’s won’t help and just want me on pregablin or gabapentin which I don’t want to take. Just constantly feeling as though something is else is going on. Recently had polyps removed from the bowel, breast/shoulder so bad I could cry and palpations and dizzy spells in the last few weeks. They keep saying bloods are normal but have requested a copy to see myself. Been on oestrogen HRT patches 50mg since June. Didn’t want to go on the patches. It couldn’t cope with the insomnia and sweating. Sorry for the rant xx

[Afrohair in reply to Lindle]

Which surgeon did you use and where

[Lindle in reply to Afrohair]

Mr Trehan - now retired.

[Simo7]

Lindle can I ask about how you feel having long chronic endo for so long has affected you mentally or how you felt at the time? I lost my Fallopian tube at 20, had pains well before that & give or take a few years reprove where it’s been tolerable, it’s been ongoing until now, I’m 47. I was blessed & had ivf for my first child naturally for second. Tried EVERY complimentary/diet therapy going, never took any hormones though as I’ve always felt they mask. 10 operations, 2 of them excision, now awaiting another & , I’m sure i have endo on my diaphragm too but BSGE surgeon says not. I just feel at the point of acceptance. Did you feel the same at points? Clearly you battled on and got the best outcome for yourself (well done) but mentally I just wondered how you felt on the journey? Thanks