If I have endometriosis, am I likely to get adenomyosis?

I have endometriosis, could I have endo

Endometriosis is a condition where endometrial tissue — that is, the lining layer of the womb that sheds each month as your period — is found growing outside of the uterus. Unlike within the womb, where there is an exit pathway out of your body for the blood to leave as menstruation, when the same tissue grows in other parts of the body (for example, around the ovaries, near the rectum, or anywhere else in the body) and bleeds, the blood cannot leave the body and instead causes a chronic inflammatory reaction.

Between 2 and 10% of women have endometriosis, with a higher prevalence among women who experience subfertility, that is, difficulty getting pregnant (up to 50%).1

Not everyone who has endometriosis will experience symptoms, but those who do can suffer from anything from mild to debilitating pain during menstruation, pain during sexual intercourse, pain on passing faeces or urine, and pelvic pain, depending on where exactly the endometriosis is growing.

Women with endometriosis may also have difficulty getting pregnant, may develop “chocolate” or endometriotic cysts (collections of tissue from the bleeding), and may have associated irritable bowel symptoms.2 For the majority of women with endometriosis the pain will be cyclical, peaking during menstruation, and stopping once menstruation has finished. Interestingly, the severity of the pain does not correlate with the severity of endometriosis. It tends to occur in women of reproductive age, starting in women’s teenage years.

Why do people get endometriosis?

Scientists have not yet discovered why some women develop endometriosis. The most prevalent theory is that it begins as a result of retrograde menstruation, when blood that should flow out of the vagina during your period instead flows back the other way, possibly as a result of a womb that is tilted backwards, and exits into the pelvis.

While retrograde menstruation is not uncommon, the theory suggests that if someone has this in combination with an immune system that does not recognise these endometrial cells as not belonging outside of the womb, the deposits of cells stick in the other parts of the body. The resulting inflammation causes adhesions and scarring to other parts of the affected woman’s anatomy.

The prevailing theory is that endometriosis begins as a result of retrograde menstruation, when blood that should flow out of the vagina instead flows back the other way.

The diagnosis and management of endometriosis overlap. Since it is the bleeding of these deposits that cause symptoms, if medication is given that stops menstruation (such as the pill taken back to back for three months or injections that temporarily put your ovaries to sleep) and your symptoms disappear, it can be assumed that you have endometriosis without the need for surgery.

The only way to know for sure that you have endometriosis is to look inside your pelvis with keyhole surgery to identify uterine tissue deposits. This procedure also means you can have treatment at the same time in the form of burning or removing the tissue, as well as breaking apart the bands of scarring, and removing any endometriotic cysts that may be contributing to your symptoms. However, surgery always comes with an inherent risk, which is why medical treatment is a reasonable way to first approach a suspected diagnosis.

Adenomyosis

Adenomyosis is a different condition, in which the endometrial layer of the uterus can be found in small pockets within the actual muscle of the uterus itself, the myometrium. This may sound deceptively similar to endometriosis, as it also involves tissue being found where it shouldn’t be. For a while the condition was known as endometriosis of the uterus.

However, research suggests that adenomyosis is caused by a very different process, and there is no evidence to suggest that endometriosis causes adenomyosis. Current opinion posits that adenomyosis is usually found in a uterus that has had to heal after some sort of muscle trauma, such as a sharp curettage immediately post pregnancy (when any retained products from the pregnancy need to be removed surgically from the womb),3 or after other surgery, such as when someone has had a caesarean.4

Having one of the conditions does not mean you will have the other; there is no connecting pathway that shows having endometriosis means that you will develop adenomyosis.

In theory, these processes blur the distinct line between the muscular and endometrial layers, allowing deposits from the endometrium to invade the muscle. This theory would also explain why adenomyosis is more prevalent among women who have already had children; it normally presents in women between the ages of 40 and 50.

These pockets of endometrial tissue buried within the womb’s muscle layer still bleed under hormonal influence and so women that have adenomyosis can also experience painful periods. They are more likely to complain of heavy and prolonged menstruation, and to be found to have a bulkier, more tender womb on examination as the small pockets of blood collect in the muscle layer of the uterus, making it globular in appearance.

Diagnosing and treating adenomyosis

Previously, adenomyosis was a diagnosis that could only be made retrospectively, after performing a hysterectomy (surgical removal of the uterus), and finding adenomyosis within the muscle layer. However, advances in imaging now mean that highly skilled specialists in transvaginal ultrasounds and MRI images can reliably detect about 8 out of 10 cases of adenomyosis in women.5

Treatment for adenomyosis can involve stopping the menstrual cycle with synthetic hormones, as with endometriosis, so treatment of the two conditions does overlap. If the deposits within the womb’s muscle layer don’t bleed, they won’t cause further pain or heavy periods.

Adenomyosis can also respond to local hormonal treatment such as a Mirena intrauterine system (IUS), also used as contraception. This releases a progesterone called levonorgestrel directly on to the lining of the womb preventing the cells from dividing and becoming thick.

Treatment for adenomyosis can involve stopping the menstrual cycle with synthetic hormones, as with endometriosis, so treatment of the two conditions does overlap.

If the main symptom of adenomyosis is heavy bleeding this can also be managed by burning the lining of the womb, inserting a Mirena IUS, or even having a procedure called uterine artery embolisation. This is where all of the blood vessels that feed the uterus are visualised in an x-ray type of lab, and a doctor (an interventional radiologist) inserts small devices to block off specific arteries leading to the blood supply of adenomyoses. This is the same procedure that is sometimes used to manage uterine fibroids (overgrowths of the uterine muscle causing heavy bleeding and a feeling of pressure).

Are the two conditions linked?

As you can see, there are many similarities in the way that these two conditions present and are managed. Endometriosis is more likely to present in younger women with cyclical pain symptoms, with adenomyosis more common in older women with heavier bleeding. It can be hard to differentiate between the symptoms without extensive examination and investigation.

The conditions do coexist in some women; almost a third of women with endometriosis also have adenomyosis.6 In women who are having difficulty conceiving this number goes up to two thirds.7 However, it is not known why this is the case, and not everyone with the condition is infertile. The incidence of adenomyosis among the general population is also unknown as historically it could only be diagnosed in hindsight, but it is believed to be anywhere from 5 to 70%.8

What we do know is that having one of the conditions does not mean you will have the other, and that there is no connecting pathway that shows having endometriosis means that you will also one day develop adenomyosis. The ways they occur follow distinctly different anatomical and immunological pathways of development. Clinical examination and ultrasound diagnosis can help diagnose which condition you may have, or if you have both.

If you feel you have any of the symptoms listed and they are negatively affecting your quality of life then a good place to begin is a visit to your GP, who can take a history, perform a clinical examination, order blood tests and imaging investigations, and start you on some basic medicines that may be able to resolve your symptoms, or refer you on to a gynaecologist who can address your concerns.

References

  1. G. A. Dunselman et al., ‘ESHRE Guideline: Management of Women with Endometriosis’, Hum Reprod, Vol. 29, No. 3, 2014, pp. 400-12, [accessed 17 January 2019].
  2. Ibid.
  3. M. Habiba et al., Uterine Adenomyosis: The Pathophysiology of Adenomyosis, (Springer International publishing, 2015), pp. 45-70.
  4. J. C. Riggs et al., ‘Cesarean section as a risk factor for the development of adenomyosis uteri’, J Reprod Med, Vol 59, No. 1-2, 2014, pp. 20-24, [accessed 17 January 2019].
  5. M. Habiba et al, Uterine Adenomyosis.
  6. M Bazot et al., ‘Adenomyosis in endometriosis – prevalence and impact on fertility. Evidence from magnetic resonance imaging’, Hum Reprod, Vol. 21, 2006, pp. 1101-02, [accessed 17 January 2019].
  7. G. Kunz et al., ‘Adenomyosis in endometriosis – prevalence and impact on fertility. Evidence from magnetic resonance imaging’, Hum Reprod, Vol. 20, 2005, pp. 2309-16, [accessed 17 January 2019].
  8. F. A. Taran et al., ‘Adenomyosis: Epidemiology, Risk Factors, Clinical Phenotype and Surgical and Interventional Alternatives to Hysterectomy’, Geburtshilfe Frauenheilkd, Vol. 73, No. 9, 2013, pp. 924-931, [accessed 17 January 2019].

Dr. Natasha Abdul Aziz

Natasha is senior clinical fellow in Obstetrics & Gynaecology with the Chelsea & Westminster NHS foundation trust. She was previously a clinical research fellow at the University of Oxford and national women’s health lead for the Muslim Doctors Association of the UK. Her special interests include the use of digital healthcare solutions to help vulnerable populations of women, volunteer work with refugees, and chasing that last sliver of sun on her balcony after work.

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