Symptoms of endometriosis can vary. Some people are badly affected, while others might not have any noticeable symptoms. Some people call the pain of endometriosis "killer cramps" because it can be severe enough to stop you in your tracks. For many, it gets worse as they get older.
- Pain in your lower tummy or back (pelvic pain) usually worse during your period.
- Period pain that stops you doing your normal activities.
- Pain during or after sexual intercourse.
- Pain when peeing or pooing during your period.
- Feeling sick, constipation, or diarrhoea.
- Difficulty getting pregnant.
- Heavy bleeding that causes you to use lots of pads or tampons, or you may bleed through your clothes.
- For some, endometriosis can have a big impact on their life and may lead to feelings of depression.
- Very long periods.
- Severe cramps.
- Severe migraines during your period.
- Allergies that get worse around your period.
- Vaginal bleeding between periods.
- Blood in your urine or from your rectum.
- Bloating which is often referred to as "endo belly" or "swelly belly"
Getting A Diagnosis
Getting a diagnose isn't always a short or easy path to take, it can take on average 6 to 8 years to diagnose endometriosis. We know this is unacceptable and are fighting really hard for this to change.
Most GP appointments are between 5 and 10 minutes long, it would be a good idea to request a double appointment as it can take time to go through your list of symptoms with the doctor and they may request an examination. It is also important to understand that the only actual way to diagnose endometriosis is through a diagnostic laparoscopic procedure. Very rarely endometriosis can be diagnosed by an ultrasound or MRI scan but this is usually only possible when you have endometriomas on your ovaries. With this in mind it can be difficult for GP's to diagnose - they are trained to deal with thousands of conditions but do not specialise in an area such as endometriosis. Endometriosis has a lot of symptoms and most of which can be similar to other conditions, so it is not always apparent straight away that it could be endometriosis. Adolescent endometriosis can be even harder for a GP to diagnose as teenagers bodies are different when compared to a fully grown adult. For this reason it is extremely important you have a list of your symptoms prepared for the appointment. Our "Teens With Endo" group has a pain and symptom diary that can be filled out in preparation for your appointment, this can help a doctor note your symptoms and any patterns in your pain/symptoms, for example if you have an increase of pain during your period or when you are ovulating.
What to expect at the appointment - The doctor will ask you to describe your symptoms and will ask you questions. The GP may want to feel your tummy, and he may ask to do an internal examination. Please note the internal examination will depend on your age, many doctors will not perform an internal examination on anyone under the age of 18. Many people with endometriosis will find internal examinations uncomfortable and often slightly painful, this will only last for about 30 seconds to 1 minute. You always have the right to refuse an internal examination. If your GP hasn't spoken with you about being referred to a gynaecologist, now is the time to request it. Investigations that can give preoperative information are CT scan, urography and cystoscopy examinations. They are very helpful in deciding the type of intervention so the patient can be informed of possible surgical interventions (intestinal resections, bladder resections) also, depending on the type of intervention, the patient can be adequately informed about possible postoperative complications. Important reminder, endometriosis isn't always visible on a CT scan, MRI or ultrasound. The possibility of endometriosis should not be excluded because of negative results. Bio markers/lab results - The lab results have little to no role in the likely endometriosis diagnosis. The most known marker is CA125 and unfortunately it has neither sensitivity or specificity in the diagnosis of endometriosis.
Common investigations explained -
- Physical examination - When doing a pelvic examination the doctor is feeling for abnormalities.
- Imaging - Abdominal ultrasound can diagnose ovarian cysts. MRI can diagnose deep infiltrating lesions (D.I.E), also known as deep infiltrating endometriosis.
- Laparoscopic procedure - Patient history and physical findings are a strong suspicion of endometriosis, however the correct diagnosis requires surgery. Excision surgery is the gold standard with the highest success rate and lowest recurrence rate.