• The Endo Monologues

WTF Is Adenomyosis Anyway?

If you didn't know, April is adenomyosis awareness month and whilst the spotlight is often on endometriosis, it's about time that this lesser known condition becomes better understood. I hope this blog post offers a comprehensive and educational insight to what the hell adenomyosis actually is and why so little is known about it in comparison with its ugly sibling, endometriosis. Most of the time when you mention the word adenomyosis to someone, they have absolutely no idea what you're talking about. Even when writing this, the word 'adenomyosis' is flagged as an incorrect spelling which pretty much sums up the situation.

So in all honesty, WTF is adenomyosis? When I was first told that it was suspected I had adenomyosis (pronounced ad-uh-no-my-oh-sis), I was told that it meant I had a slightly thicker uterus that normal. At that time I believed my doctor's overly simple explanation for my horrendous periods but obviously with research I now know that it's much more complicated than that.

Matalliotakis, Kourtis, & Panidis (2003) state that adenomyosis is when ectopic endometrial tissues are found within the myometrium in the uterus. A simpler explanation of adenomyosis is that it is a oestrogen-dependent gynaecological disorder wherein cells from the endometrium (the inner layer of the uterus) invade and implant in the myometrium (the outer, muscular layer of the uterus). This tissue then continues the process of the menstrual cycle; it thickens, breaks down and then bleeds. As a consequence, this can cause the uterus to become enlarged and painful and wreak havoc on the reproductive organs and potentially the rest of the body (Mayo Clinic, 2021).

Adenomyosis can be separated into three categories: focal adenomyosis which is when adenomyosis has developed in one particular site of the uterus; diffuse adenomyosis which is where adenomyosis is spread throughout the uterus or; adenomyoma which is a form of focal adenomyosis which presents as a uterine mass or benign tumour (Seckin, 2020).

Who can get adenomyoisis and what can cause it? As so little is known about adenomyosis in comparison with endometriosis, the information is always evolving. At the time of writing there is still a huge discrepancy as to how many individuals have adenomyosis and who is at a higher risk of developing it. As highlighted by Azziz (1989), the prevalence of adenomyosis can vary anywhere from 5% to 70% depending on type of research study and method of diagnosis, which isn't very specific at all. This is further supported by Dietrich (2010) who states that 'few cases of adenomyosis conditions are reported in the literature, and management schemes differed with regard to medical versus surgical approaches'. So even a decade later, not much progress had been made. However, Senturk & Imamoglu (2015) suggest that adenomyosis could affect 20% of individuals who were born with a uterus.

This is further skewed by the fact that the majority of the research is based upon women who have had hysterectomies, meaning the current data that suggests that it mainly affects 35–50‐year‐olds, individuals who have had children and/or experience heavy, prolonged periods (Pinzauti et al. 2015) is inaccurate. That's not to say that adenomyosis isn't more common in those individuals but it makes it seem like anyone outside of that demographic is unlikely to develop it which would be untrue.

However, the development of imaging techniques in the last decade as meant that there has been a rise in non-invasive diagnosis which as resulted in adenomyosis being diagnosed in individuals outside of the aforementioned demographics (Vannuccini & Petraglia, 2019) For example, a study by Pinzauti et al. (2015) diagnosed 34% of their focus group who were between the age of 18-30 and who hadn't had children with adenomyosis. This is supported by a 2018 study focused on an 18 year old woman by Vidal et al. (2018) who diagnosed her with adenomyosis in association with prolonged and heavy periods.

Adenomyosis is commonly found to coexist with other gynaecological conditions, such as endometriosis and uterine fibroids (Vannuccini & Petraglia, 2019) which really, really sucks. In a study by Kunz et al. (2005) it was found that adenomyosis was significantly associated with endometriosis, with 79% of the individuals in the study having both conditions. This is further supported by a study by Leyendecker et al. (2015) that found that the prevalence of endometriosis in adenomyosis was 80.6% and the prevalence of adenomyosis in endometriosis was 91.1%. Seckin (2020) predicts that 40-50% of individuals will have both conditions and that 50% of individuals will have uterine fibroids as well as adenomyosis.

Furthermore, there are additional risk factors which could make an individual more likely to develop adenomyosis. In a study by Parazzini et al. (2009) it was found that individuals who have had induced abortions had a higher risk as well as individuals who have had a cesarean or uterine surgery. There is also a high correlation between dysmenorrhoea (painful periods) and/or menorrhagia (abnormally heavy or prolonged bleeding) and the development of adenomyosis (De Souza et al., 1995). There is also research to suggest that pregnancy itself can also be a factor in developing adenomyosis as adenomyotic tissue seems to have an 'increased sensitivity to estrogen, so increased levels of estrogen in pregnancy would promote the development of this condition' (Manta et al. 2016). In the same study, it also suggested that smoking and the use of anti-depressants could trigger the development of adenomyosis.

Finally, adenomyosis could develop as a result of the 'spread and buildup of myometrium cells through the lymphatic system or through stem cells' or through trauma to the uterine tissue or vagina which can cause inflammation which aggravates the tissue of the uterus and causes it to migrate into the walls of the myometrium (Seckin, 2020).

What are the symptoms? Adenomyosis affects people differently and as a result the symptoms can vary from person to person so please don't see this as a check list or definitive list.

  • An enlarged uterus

  • Painful periods (dysmenorrhea)

  • Heavy periods/excessive bleeding

  • Uterine spasms/cramps

  • Infertility

  • Painful intercourse (dyspareunia)

  • Abdominal pressure/bloating

  • Lower back pain

  • Sciatica

  • Fatigue

  • Pelvic pain

  • Painful bowel movements

  • Pain with urination

I think I have adenomyosis, how do I go about getting a diagnosis?

At this point I will just remind you that I am not a doctor! If you believe you have endometriosis or any other gynaecological issue then I would recommended making an appointment with your doctor to discuss your situation. I would suggest keeping a diary of your symptoms for your own personal record but also so that it can help when speaking to your doctor. Once you've spoken to your doctor they will hopefully refer you to a gynaecologist.

As aforementioned, in the last decade there have been technological advances in imaging that allow adenomyosis to be diagnosed non-surgically and as a result it is possible to receive a diagnosis via an ultrasound/transvaginal scan or an MRI rather than going through the surgically invasive process of a hysterectomy (Habibaa et al. 2020).

Is there a cure?

Currently the only way to cure adenomyosis is by a hysterectomy but advances are starting to be made with laparoscopies to remove adenomyosis lesions and focal adenomyosis. (Osada, 2018).

Again this is a general overview of the different methods available to help manage your adenomyosis. I will add the caveat that whether or not these are successful at managing your symptoms is a very personal thing; what works for one individual might not work for another and vice versa!

Treatment options for adenomyosis include:

  1. Laparoscopic surgery: This can involve excision (cutting out the adenomyosis lesions) or ablation (burning off the adenomyosis lesions). For more information on what a laparoscopy is, click here.

  2. Hormone therapy: These work by suppressing the ovaries from producing oestrogen, therefore preventing ovulation. Depending on which hormone therapy this can mean lighter, shorter periods or the absence of a period altogether which can help the symptoms of adenomyosis (Al Jama, 2011). Hormone therapy options include: • Oral contraceptive pill (combined oestrogen & progesterone). • Progestin/progesterone therapy (such as the Mirena IUD or the mini pill/POP). • Gonadotropin-releasing hormone (Gn-RH) agonists and antagonists. (For example, Lupron, Orlissa and Zoladex. For my post on Zoladex, click here.) • Aromatase inhibitors.

  3. Pain medication: Anti-inflammatory painkillers are often recommended by doctors, specifically non-steroidal anti-inflammatory drugs (NSAIDs) such as ibuprofen or mefenamic acid which can help reduce uterine spasms, menstrual cramps, sciatica pain, etc. (Mayo Clinic, 2021)

  4. CBD (cannabidiol): For more information on how CBD can help manage the symptoms of adenomyosis, click here.

  5. Holistic therapies: Such as acupuncture, sports massage, reflexology, etc.

As always I hope you have found this blog post useful and not too overwhelming!


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