Endometriosis

Symptoms

(  from the Jean Hailes website)

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What are the signs and symptoms of endometriosis?

As women’s menstrual cycles vary, there are a wide variety of signs and symptoms in women with endometriosis.

The type, number and severity of symptoms experienced varies from woman to woman. Some women experience many symptoms which may be debilitating at times. Others experience no symptoms, or only discover that they have endometriosis because they cannot fall pregnant, or it is found at an operation performed for another cause.

The symptoms experienced and their severity are not necessarily related to the severity of the condition but are often more closely related to the location of the implants. For example, mild endometriosis consisting of a few implants in the Pouch of Douglas can cause debilitating pain while severe endometriosis located on the ovaries may cause little pain.

As the condition progresses the number and severity of symptoms experienced often increases, as does the number of days in the month during which the symptoms are felt. Thus, in the early stages of the disease one or two mild symptoms may be felt for the first day or two of a period. Later, as the condition worsens a larger number of symptoms may be felt with increasing severity for a greater proportion of the month.

Symptoms include:

Pain

Approximately three quarters of women with endometriosis have pelvic pain and/or dysmenorrhea15.  It may occur in any of the following forms:

  • Period pain – immediately before and during the period
  • Pain during or after sex
  • Abdominal, back and/or pelvic pain
  • Pain with opening bowels, passing wind or urinating
  • Ovulation pain, including thigh or leg pain

Bleeding

  • Heavy bleeding, with or without clots
  • Irregular bleeding with or without a regular cycle
  • Prolonged bleeding
  • Premenstrual spotting

Other symptoms may include:

  • Bowel or bladder symptoms, including bleeding from bladder or bowel
  • Irregular bowel habits e.g. constipation, diarrhoea
  • Increase in urinary frequency or change in your normal function
  • Infertility
  • Premenstrual symptoms
  • Tiredness
  • Mood changes
  • Bloating

When do I seek help?

It is important to seek help when your symptoms are interfering with your daily living and quality of life, for example:

  • Missing work, school or recreational activities
  • When medicines used for period pain don’t help
  • When you need to stay in bed
  • When symptoms are getting worse
  • When symptoms occur cyclically

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Dietary fats linked to endometriosis

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Research based on the Nurses’ Health Study II has shown that certain types of dietary fats may increase the risk of endometriosis, while other types are associated with a lower risk. The study analysed 12 years of data, which equated to 568,153 person-years. Nearly 1200 cases of diagnosed endometriosis occurred over this time.

The women who consumed the most long-chain omega-3 fatty acids were 22 per cent less likely to be diagnosed with endometriosis compared to the women who consumed the least. Long-chain omega-3 fatty acids are the “good” fats found in oily fish and are associated with maintaining cardiovascular health.

Conversely, those women who consumed the most trans-unsaturated fat were 48 per cent more likely to develop endometriosis than those who consumed the least. Trans-unsaturated fats are commonly found in deep-fried foods, some take-away foods and baked goods such as pastries, cakes and biscuits.

The authors of the study suggest that increasing long-chain omega-3 fatty acids intake and decreasing trans-unsaturated fats intake could reduce a women’s risk of developing endometriosis, potentially making it the first indentified modifiable risk factor.

According to Jean Hailes gynaecologist Dr Elizabeth Farrell, “Women who have an unhealthy weight are more likely to have more oestrogen, which if they have a tendency to endometriosis would stimulate growth of the endometriosis cells. Avoiding animal fats and trans-unsaturated fats and having more omega-3 fatty acids is important for health and wellbeing. This is an interesting observational study showing once again that healthy eating with appropriate foods/oils may have a positive effect on an illness or reduce its risk. More research however is needed to see how dietary oils may affect endometriosis cells.”

Content updated May 4, 2010

FAQ

1. What’s the difference between having heavy periods and endometriosis?

Some women have heavier or more painful periods than others, however this does not mean they all have endometriosis. Endometriosis occurs when the tissue normally lining the uterus (the endometrium) is found outside the uterus. The misplaced tissue commonly grows on the fallopian tubes, the ovaries or the tissue lining the pelvis. Over time, it can develop into cysts or become sticky, causing the surrounding tissues and organs to stick together and scar.

2. How do I know if I have endometriosis?

Symptoms include:

  • Lower abdominal, back or pelvic pain, during or before your period
  • Heavy periods
  • Pain at other times
  • Tiredness, bloating, mood changes, infertility

Having to take time of school or work is a good indicator of the severity of the symptoms.

Endometriosis can only be diagnosed accurately by a laparoscopy. This is an operation performed under general anaesthetic, where a small telescope is inserted into the abdomen through a cut in the belly button. Sometimes an ultrasound can also show signs of endometriosis, but only if the endometriosis forms a cyst in the ovary.

3. What causes endometriosis? Is it hereditary?

We don’t know what causes women to develop endometriosis. There are some examples of families where different generations of women are affected, so a genetic or hereditary factor may be involved.

4. How do I cope with a disease that has no cure?

The following emotional effects can all impact on your quality of life:

  • Living with a potentially chronic condition
  • Ongoing pain or other symptoms
  • Increased anxiety or moodiness
  • Painful intercourse which interferes with your relationship
  • Difficulty getting pregnant

5. I have been diagnosed with endometriosis. What are my chances of getting pregnant?

30 per cent of women with infertility have endometriosis. Currently, the most effective treatment is surgical removal of tissue, usually by laparoscopy. The chances of pregnancy seem to be best immediately following surgery. On a positive note, many women report that their endometriosis is temporarily ‘cured’ when they become pregnant (because they are no longer having their period).

6. Will pregnancy cure endometriosis?

Symptoms of endometriosis appear to improve with pregnancy. This is thought to be due to decidualisation (higher progestogen levels cause the endometriosis to regress); however, the long term effects of endometriosis are unclear. In a small study of 23 cases (McArthur & Ulfelder, Obstet Gynecol Surv. 1965;20(5):709), the endometriotic lesions enlargened during the first trimester and then regressed as the pregnancy continued.

7. Will endometriosis affect my pregnancy or delivery in any way?

Endometriosis is diagnosed in a third of women presenting for investigation of infertility. Severe endometriosis can interfere with getting pregnant but in mild cases the reasons for difficulty falling pregnant are uncertain. Endometriosis does not appear to affect pregnancy and delivery.

8. Can endometriosis lead to cancer?

Very rarely, cancer has been diagnosed in endometriosis tissue. It is recommended if a woman is diagnosed with an endometrioma or chocolate cyst in an ovary on ultrasound and there has been no histological diagnosis (what the cells look like under a microscope) of endometriosis, that the cyst be removed so that a histological diagnosis can be made.

9. How does endometriosis affect the bowel?

Endometriosis can rarely develop on the outside of the bowel and may, in time, infiltrate or develop into the bowel, causing pain, bleeding and, if in the lower pelvis near the uterus, dyspareunia (pain with intercourse).

10. Will my endometriosis go away after menopause?

Usually endometriosis does resolve after menopause, however rarely it may recur on hormone replacement therapy (HRT), or even more rarely spontaneously.

11. Do women with endometriosis experience menopause any differently?

If menopause occurs naturally at the expected age, the experience is not different from other women without endometriosis. Menopause experience is individual and ranges from no symptoms to severe symptoms. If a woman has had a surgical menopause i.e. her ovaries have been removed with or without her uterus, then severe symptoms will be experienced unless HRT is commenced soon after surgery.

12. If my symptoms aren’t affecting my quality of life, is surgery necessary?

If you already have a definitive diagnosis of endometriosis and your symptoms are not affecting your life or you are managing them effectively, surgery may not be necessary.

13. I am only 19 years old, is it wise for me to start having surgeries at such a young age?

If you have severe pain and your life is impaired, endometriosis or the reason for the pain needs to be diagnosed initially and laparoscopy is the only way to make this diagnosis. Once the diagnosis is made, further surgery may not be necessary as the symptoms may be able to be controlled by medications such as the combined oral contraceptive pill.

Discuss all your symptoms with your GP and ask to be referred to a gynaecologist with a special interest in endometriosis. You may like to see a counsellor or psychologist to discuss your feelings and deal with emotional issues.

  1. Hello Dr Holloway
    I am waiting for my supply of biodentical HRT and have been researching what they say can be some bad effects from Troches.
    If progesterone is insufficient to prevent oestrogen induced endometrial hyperplasia, then these treatments might cause endometrial carcinoma. There are cases proving that this has happened from biodentical HRT.
    Should I be worried to take these for a long time.

    • If the BHRT is done correctly then it will not increase your risk of endometrial problems. I have reprinted the evidence on my website under safety of BHRT here:

      Climacteric. 2012 Apr;15 Suppl 1:18-25. doi: 10.3109/13697137.2012.669584.
      Micronized progesterone and its impact on the endometrium and breast vs. progestogens.
      Gompel A.
      Source

      Unité de Gynécologie Endocrinienne, APHP, Cochin-Port Royal, Paris, France.
      Abstract

      It is well established that progestogens protect the endometrium against the proliferative effects of estrogens in postmenopausal women receiving hormone replacement therapy (HRT). Therefore, micronized progesterone and progestogens are recommended as part of combined HRT in women with an intact uterus. The protective effect of progestogens against hyperplasia and endometrial cancer does not appear to differ with different progestogens (micronized progesterone or progestogens), but appears to be affected by the regimen and thus the dose, with continuous combined treatment conferring better protection. However, the protective effect of progestogens seen in the endometrium is not replicated in the breast. Progestogens combined with estrogens are generally associated with a small increase in the risk of invasive breast cancer, which is believed to be due to a promoter effect. However, all progestogens are not equivalent in their effects on the breast and breast cancer risk. Micronized progesterone does not increase cell proliferation in breast tissue in postmenopausal women compared with synthetic medroxyprogesterone acetate (MPA). Experimental evidence suggests that the opposing effects of MPA and micronized progesterone on breast tissue are related to the non-specific effects of MPA, including glucocorticoid activity and differences in the regulation of gene expression. Therefore, for women with an intact uterus, micronized progesterone may be the optimal choice as part of combined HRT.

      This is from an impeccable source, in a peer reviewd journal, which is the official journal of the International Menopause Association. There are other medical journal articles proving the same

  2. thank you Dr Colin Holloway for this information..

  3. Dear Dr Holloway, I’m 28 and have suffered from incredibly bad period pain, PMS symptoms and heavy bleeding most of my adolescent life, when i had my daughter there was a little relief but they’ve made a return. I had a laparoscopy to remove an ovarian cyst and they scanned my uterus for signs of endometriosis but no answers to why i suffer so badly, I was then put on an IUD which has lessened bleeding but the PMS and painful sensations have not stopped. Can you please advise what I can do? My GP thinks I may need to go under the knife should things not work out after another 6 months, I’d rather not though.

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