Understanding Endometriosis – When pain should not just be accepted

Endometriosis is a long-term condition where tissue that belongs in the lining of the womb grows outside of the womb, such as around the ovaries, fallopian tubes or bowel.

However, it still behaves like womb-lining tissue and it can thicken and bleed each month. This can cause inflammation, pain, and sometimes scarring. Over time, scar tissue can cause organs to stick together (called adhesions), which may also lead to pain or can affect fertility.

Endometriosis is sensitive to oestrogen, a hormone that naturally rises and falls during the menstrual cycle. Oestrogen can make endometriosis tissue grow and become more active.

Endometriosis is common—around 1 in 10 women may have it, and it is more frequent in women who have difficulty getting pregnant.

Where can endometriosis occur?

Image credit: NHS

Endometriosis can appear in several areas:

• Superficial endometriosis: on the surface lining of the pelvis or abdomen.
• Deep endometriosis: deeper growths around the uterus, fallopian tubes, bladder, vagina or bowel.
• Endometriomas (“chocolate cysts”): cysts on the ovaries filled with old blood.
• Outside the pelvis: less common but can occur in scars, the chest or other organs.

What causes it?

We don’t yet know the exact cause. Several theories exist—such as backflow of menstrual blood or immune system differences—but none have been proven. What we do know is that you are not to blame, and it can affect anyone who has periods and even into menopause.

What are the most common symptoms?

Endometriosis affects people very differently. Some have no symptoms, while others experience severe pain each month that disrupts work, school or daily life.

Symptoms can be cyclical (linked to periods) or nearly constant, and may include:

• Very painful or heavy periods
• Pelvic pain at other times of the month
• Pain during sex
• Pain when opening your bowels, often worse during your period
• Fatigue
• Difficulty getting pregnant

Less common symptoms may include bleeding from the back passage or bladder during periods, shoulder tip pain, or pain in old scars around the time of your period.

Having one or more of these symptoms does not always mean you have endometriosis, but it’s important to talk to a clinician if they affect your quality of life.

Diagnosis – why can it take time?

Sadly, many women wait years for a diagnosis.

This can be due to:

• Symptoms being misunderstood or dismissed
• Cultural taboos around discussing periods
• The fact that symptoms overlap with many other conditions
• Limits of current tests

GPs and clinicians are working to improve awareness and reduce this delay.

What tests might be used?

No single test can diagnose every case, but you may be offered:

Examination

A pelvic or internal examination may help identify tender areas, cysts or signs of scarring.

Imaging

• Pelvic ultrasound: often done internally. Good for picking up ovarian cysts but may miss smaller or superficial endometriosis.
• Specialist endometriosis ultrasound: a more focused scan done by specially trained clinicians that can detect deeper disease.
• MRI scan: may identify deep endometriosis if ultrasound is unclear.

Biomarkers

• Saliva tests: available privately but not yet widely recommended due to limited evidence.
• Blood tests: currently not reliable for diagnosis.

Laparoscopy

A keyhole operation that allows a specialist to look inside the pelvis. It has typically been deemed the “gold standard,” for diagnosis but because it is invasive, it’s now usually recommended if:

• Scans are unclear and
• Symptoms haven’t improved with initial treatments

Some women prefer to have a laparoscopy sooner for clarity and peace of mind.

What are the treatment options?

Treatment depends on your symptoms, plans for pregnancy and personal preference. Your GP or specialist will talk you through the options. Unless you have very extensive disease, most women will be offered medication to manage suspected endometriosis in the first instance. Medication is also offered to women post-surgery for persistent disease or to prevent recurrence.

1. Lifestyle and non-medical support

Some people find benefit from:

• Physiotherapy
• Acupuncture
• Heat, TENS machines
• Anti-inflammatory diet
• Mindfulness and stress management

2. Pain relief

• Paracetamol, ibuprofen, mefanimic acid (period-specific anti-inflammatory medication)
• Occasionally stronger pain relief or nerve-targeting medicines
• Rarely, nerve blocks

3. Heavy periods

• Tranexamic acid can be an effective non-hormonal medication to help lighten periods
• Iron supplements may be recommended if you are found to be anaemic.

4. Hormonal treatments

These aim to reduce or stop periods, lower inflammation and shrink endometriosis tissue.

Combined hormonal contraceptives (the pill, patch or ring):

Help by thinning womb lining tissue and reducing hormonal fluctuations.

Progestogen-only options (‘mini’ pill, Mirena coil, implant or injection):

Help by thinning the lining, reducing oestrogen, and sometimes stopping ovulation.

Other progestogen options (non-contraceptive):

• Dienogest: a type of progestogen shown to be effective and often used when other contraceptives haven’t helped.
• Nalvee: another option, less studied but increasingly used.

It is important to note that many of the pain relief and hormonal treatment options mentioned thus far can and should be offered to women with painful periods in the absence of endometriosis, as they may really help.

GNRH treatments (injections or tablets, e.g. zoladex or relugolix):

These temporarily switch off oestrogen production. They can cause menopausal-like side effects, so “add-back” therapy (small hormone doses) is usually given. These are generally used for moderate to severe symptoms when other treatments haven’t worked and they are typically prescribed by gynaecologists in endometriosis clinics.

5. Surgery

Surgery may be recommended if disease is extensive, symptoms are severe or persistent despite medication, if cysts are present, or if fertility is affected. Surgical options include:

1. Keyhole surgery to remove endometriosis deposits
2. Removing ovarian cysts (endometriomas)
3. Releasing adhesions
4. Hysterectomy (removal of the womb, and sometimes ovaries) — this can help some women but does not guarantee a cure, because endometriosis exists outside the womb.

Women with disease affecting their bowel or bladder are usually treated in a specialist centre by a team including both gynaecologists and other surgeons.

How does endometriosis affect fertility?

Endometriosis can make it harder to get pregnant. Options may include:

• Laparoscopy to remove endometriosis, which can improve natural fertility
• Intra-uterine insemination (IUI) or in-vitro fertilisation (IVF) if pregnancy doesn’t occur naturally
• Egg freezing, if planning a family later, especially if aged 30–40

A specialist can help you understand your individual chances after assessment.

What about adenomyosis?

With adenomyosis, womb lining tissue grows inside the muscle wall of the uterus. This can cause heavier and/or more painful periods. It is also often asymptomatic and an incidental finding on ultrasound. Women with endometriosis may also have adenomyosis.

Pain relief and hormone medications, as above, can reduce symptoms. If you are sure you have completed your family, procedures such as endometrial ablation (thinning the womb lining with heat) and uterine artery embolisation (injecting small clots into the artery that supplies blood to the uterus) can also be effective.

In summary

Endometriosis is common, real, and treatable. If you have endometriosis and even if you are not ultimately diagnosed with endometriosis, you do not have to live with severe period pain or pelvic symptoms. If your periods disrupt your daily life, affect your mental well-being or stop you from doing normal activities, please speak to your GP.

References:

https://www.eshre.eu/Guideline/Endometriosis

https://www.rcog.org.uk/