Endometriosis: Signs and symptoms

If you are experiencing problems with your periods, having unexplained symptoms including pain throughout your menstrual cycle, or have already been diagnosed with endometriosis, it helps to have an understanding of the condition to ensure you have the correct diagnosis and the right treatment. Endometriosis can be a very debilitating condition when left untreated so having the right information can help save years of unnecessary suffering. In this section, we explain the fundamentals of endometriosis and take a closer look at:

• What is endometriosis?
• Signs and symptoms of endometriosis
• Diagnosing endometriosis
• Blood tests for endometriosis
• Causes of endometriosis
• Impact of endometriosis on Fertility
• Treatment for endometriosis
• Medical treatment
• Surgical treatment
• Diet and lifestyle for endometriosis
• Endometriosis and IVF

What is endometriosis?

Endometriosis is a common condition that can cause pelvic pain and infertility. The normal lining of the uterus (womb) is called the endometrium and endometriosis is where endometrial tissue develops outside the womb. Endometriosis therefore responds to the hormonal changes of the natural cycle in a similar way to the endometrium, leading to inflammation, particularly during your period. Endometriosis can be seen during an operation to investigate the pelvis (laparoscopy) as small dark red or blue/black spots that can occur anywhere on the outer surface of the uterus, ovaries and fallopian tubes, and can be scattered across the surface of the peritoneum (the surface lining of the abdominal cavity).

Endometriosis can cause scarring and adhesions, which may then result in internal structures sticking together and prevent normal functioning. Cysts can also develop on the surface of the ovaries. These may grow to a significant size (several centimetres in diameter). Sometimes the bowel can stick to the uterus and ovaries, which may lead to pain when passing stools and bleeding from the rectum during menstruation. Nodules can also develop at the top of the vagina and in the bladder. In fact, endometriosis has been found in virtually every organ of the body. Endometriosis can also be associated with adenomyosis, which is when pockets of endometrium develop within the muscle (myometrium) of the uterus.

Signs and symptoms of endometriosis

Endometriosis is one of those conditions that often causes prolonged suffering not only because of the condition itself but because it typically takes years to get a diagnosis, leaving women without any kind of treatment to help. Understanding your body and what is normal is incredibly important in order to help you protect your lifelong health and wellbeing. You can find out more about what a normal menstrual cycle should be like in our periods section. A lack of knowledge is a significant source of disempowerment as it means you are reliant on doctors or online test results that simply replace the doctor without giving you an understanding of what you can do about your condition and the best treatments for you.

The usual symptoms of endometriosis are:

• Pelvic pain, particularly during your period (dysmenorrhea) and also during sex (dyspareunia). Severe endometriosis that causes dense adhesions in the pelvis and ovarian cysts can cause constant pain throughout the month – this is one of the significant signs that you may have endometriosis.
• Fertility can also be impaired.
• Erratic or unpredictable periods.
• Altered immune function.
• Inflammation

Diagnosing endometriosis

Endometriosis is usually diagnosed during an operation known as a laparoscopy, which should be carried out by an experienced gynaecologist who can both diagnose and treat the problem during the same procedure. The lesions are usually too small to be seen during an ultrasound scan of the pelvis, as they are usually just a millimetre or so across. If endometriosis has caused ovarian cysts, these can usually be seen on an ultrasound as they tend to have a characteristic appearance. Magnetic resonance imaging (MRI) of the pelvis is better at detecting small lesions and is good at indicating whether other organs, such as the bowel, are affected.

Blood tests for endometriosis

A number of markers for endometriosis that we can test for in the blood have been investigated, although none have been found to accurately predict the severity of the condition or whether it’s likely to get worse. The most commonly used marker is CA-125. This is a protein that rises with endometriosis, acute pelvic inflammatory disease and ovarian cancer. While the levels tend to be higher in the latter two conditions than with endometriosis, there is considerable overlap.

Causes of endometriosis

Various theories have been suggested for how endometriosis develops, but retrograde menstruation – when menstrual blood passes back through the fallopian tubes and out into the pelvis – is the most popular and plausible. Retrograde menstruation is common. It’s seen in 75–90 per cent of women who have a laparoscopy while on their period. Menstrual blood does not always contain cells from the endometrium, however, and the factors that cause these cells to implant in the wrong places to cause endometriosis are uncertain. This is shown by the fact that only 1–20 per cent of women have endometriosis, compared to the 75–90 per cent who have retrograde menstruation.

If you have endometriosis along with some of the symptoms, you may have a genetic predisposition to developing problems and it can often run in families. The degree of endometriosis does not correlate with the symptoms of pelvic pain, dyspareunia and dysmenorrhea. It is also not possible to predict who will develop progressive disease that goes on to cause pelvic adhesions and ovarian cysts.

Impact of endometriosis on fertility

Endometriosis can affect fertility in two ways: physically and chemically. Severe endometriosis can affect fertility by physically distorting organs in the pelvis due to adhesions that smother the ovaries and tubes, and with ovarian cysts. However, while endometriosis is often found on the surface of the fallopian tubes, it does not tend to affect the inner part of the tubes and usually the tubes themselves are open.

Chemical changes associated with endometriosis mean that the biological processes needed for conception and pregnancy may be affected. Endometriosis changes the environment within the peritoneal (abdominal) cavity, including cells that deal with infection and inflammation and more inflammatory chemicals. These things have the potential to affect egg quality, sperm motility, destroy sperm and also interfere with the pick-up of the egg by the fallopian tube, fertilisation and implantation. There is still debate about how much endometriosis affects fertility unless there is pelvic deformity, however.

Treatment for endometriosis

The management of endometriosis depends on your wishes, specifically whether your main concern is pain or infertility. If you want to conceive but pain is also a problem then you will usually have analgesics (painkillers), either alone or with surgery. Appropriate analgesics include the non-steroidal anti-inflammatory drugs (NSAIDs) – naproxen (250mg three or four times a day) and mefenamic acid (500mg three times a day) are particularly effective. There is some evidence that NSAIDs may prevent ovulation, but endometriotic pain is usually worse during menstruation rather than mid-cycle and so these drugs should be safe if you want to conceive.

Medical treatment

Endometriosis changes during the menstrual cycle, with age and during hormonal therapy. Endometriosis responds to the fluctuating hormones across the cycle and reduces during pregnancy, when oestrogen and progesterone are high. Endometriosis may be suppressed with hormonal treatments. They are very successful in controlling symptoms but also suppress ovulation and so are contraceptive. With treatment, endometriosis eventually dies away but it takes several months for things to settle.

Other treatment options include the combined oral contraceptive pill (COCP) taken continuously without any breaks, the use of daily progestogen tablets or the use of long-acting injectable gonadotropin-releasing hormone (GnRH) agonists. Side effects of the latter are those of oestrogen deficiency – hot flushes, reduced libido, acne and oily skin – and so if used for more than six months, a low dose of an oestrogen add-back preparation (such as tibolone) is important. This combats the symptoms of oestrogen deficiency and also minimises the risk of osteoporosis (thinning of the bones). However, these medications are more relevant to the chronic treatment of endometriosis in women who experience pain rather than for the treatment of infertility.

Drug treatment of endometriosis helps with the symptoms, but has not been shown to be beneficial for fertility as it does not increase pregnancy rates and, if anything, may actually reduce them. They are also contraceptive, so we don’t recommend drug treatments if you want to conceive. Furthermore, they simply suppress endometriosis for the duration of the therapy and do not prevent progression of the disease.

Surgical treatment

Surgical treatment of endometriosis should ideally be performed during the diagnostic laparoscopy. Before surgery, you should be given appropriate information about what might be found and provide consent to treat any factors that might affect fertility during the one procedure. We routinely request consent from women having a diagnostic laparoscopy for the possibility of ablation of minor endometriosis or adhesiolysis (cutting through the adhesions). This doesn’t add more than 10–15 minutes to the procedure. Severe disease is sometimes apparent without pre-existing signs or symptoms and, in these cases, a detailed discussion is needed before proceeding to more major surgery.

If you don’t conceive within 6–12 months after surgery, the next step is in vitro fertilisation (IVF). If the aim of surgery was to remove active disease before IVF, then it is advisable to start GnRH agonist therapy after surgery to reduce the risk of the endometriosis coming back, particularly if there have been ovarian cysts. You should then start IVF after six to eight weeks as clinical pregnancy rates are significantly higher in women receiving the GnRH agonist in this way.

Laparoscopic surgery should only be carried out by appropriately trained and skilled surgeons as endometriosis taxes the skill of the surgeon more than any other disease in the pelvis. Though rare, the surgeon sometimes needs to separate affected bowel or bladder and the help of a colorectal surgeon or a urologist may be needed. If you have ovarian endometriotic cysts (endometriomata), they need to be removed very carefully to avoid destroying the valuable egg-containing tissue of the ovary. Removing them prevents the risk of problems during IVF.

Diet, supplements and lifestyle for endometriosis

There is research ongoing looking at the impact of diet on endometriosis. There isn’t clear consensus as to the best approach, however, though there is some evidence to recommend a Mediterranean-style diet. Interestingly, research shows that eating dairy is associated with a reduced risk of endometriosis, once again contradicting popular narratives you may read elsewhere. Though we can’t be sure that eating dairy is a direct cause of this reduced risk, one study found that women who consumed more than three daily portions of dairy were 18% less likely to be diagnosed with endometriosis compared to those who ate only two daily portions.

We advise following the guidance in The Fertility Diet section and our Fertility and Preconception Care course, which includes a module on endometriosis and the various dietary and lifestyle factors that may help. This includes the antioxidant supplements that may also be of benefit but we recommend seeking professional advice before taking lots of different supplements without any testing or assessment.

Endometriosis and IVF

There is ongoing debate about the impact of severe endometriosis on the success of IVF with research suggesting that rates of fertilisation and implantation are impaired. It is reasonable to suppress active endometriosis with a GnRH agonist for two to three months before IVF, particularly if it will form part of your IVF treatment protocol. If you have had previous surgery to the ovaries or you have reduced ovarian reserve, caution is needed as taking a GnRH agonist for too long might impact your response to stimulation with gonadotrophins later.

If you have endometriotic cysts, these can cause problems during IVF, as they can be accidentally pierced during the egg collection and this can then cause severe infection. Indeed, the only severe pelvic infections we have seen after transvaginal ultrasound-guided egg collection have been when an endometriotic cyst has pierced accidentally. Therefore, ideally, endometriotic cysts should be removed surgically before IVF, or if not they should be avoided during the egg collection procedure. If a cyst is entered accidentally during egg retrieval then you should have antibiotic treatment for seven days.

References

1. Adam Balen and Grace Dugdale. The Fertility Book: Your Definitive Guide to Achieving a Healthy Pregnancy. Penguin Random House (Vermilion) 2021
2. Nirgianakis, K., Egger, K., Kalaitzopoulos, D.R. et al. Effectiveness of Dietary Interventions in the Treatment of Endometriosis: a Systematic Review. Reprod. Sci.(2021).
3. Harris HR, Chavarro JE, Malspeis S, Willett WC, Missmer SA. Dairy-food, calcium, magnesium, and vitamin D intake and endometriosis: a prospective cohort study. Am J Epidemiol. 2013;177(5):420-430. doi:10.1093/aje/kws247
4. de Ziegler, D., Pirtea, P., Carbonnel, M., Poulain, M., Cicinelli, E., Bulletti, C., Kostaras, K., Kontopoulos, G., Keefe, D., & Ayoubi, J. M. (2019). Assisted reproduction in endometriosis. Best Practice & Research Clinical Endocrinology & Metabolism, 33(1), 47–59.

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