I imagine that you've come across this blog post because in one way or another you've heard of the term endometriosis and are seeking to have more information about it. This might be because you've awaiting a diagnosis, suspect you have it or you know someone who going through this process and want to educate yourself on it. Either way, I hope that this gives you an insight to what the hell it means to have endometriosis, why it sucks so much and what the common misconceptions are.
So in all honesty, WTF is endometriosis?
Medically speaking, endometriosis (pronounced en- doh – mee – tree – oh – sis) is a oestrogen-dependent condition where cells/tissue similar to the inner lining of the uterus grow elsewhere in the body (NHS England, 2021). The name itself is derived from the word “endometrium,” which is the name of the inner tissue that lines the uterus (Johns Hopkins Medicine, 2021). I emphasise the word similar because there is a dangerous misconception that endometriosis is when the actual lining itself grows elsewhere but this is false, hence the word similar.
However, these cells mirror the cells of the uterus in the fact that it follows the menstrual cycle; they thicken, break down and then bleed/shed. The issue with this is that these rogue cells can't exit via the uterus and are then trapped within your body which in turn can cause a whole plethora of health issues and problems (Mayo Clinic, 2021). These cells also have no sense of boundaries. Endometriosis is commonly found on the reproductive organs and in the pelvic area but up until recently, the spleen was the only organ where endometriosis hadn't been found. Sadly, that's no longer the case (Weyl et al. 2020).
Who can get endometriosis?
Endometriosis affects 10% of people who were born with a uterus; in terms of a global number, that's around 176 million individuals. Whilst it's more prevalent in individuals between the age of 30 to 40, it can affect anyone who is of a reproductive age and sometimes can affect individuals prior to puberty.
Research suggests that endometriosis can be hereditary with Hansen & Eyster (2010) stating that an individual who has a direct relative with endometriosis is 5-7 times more likely to develop it. You're also more likely to develop endometriosis if you've never given birth, started your periods at a young age, have irregular menstrual cycles (such as a cycle being less than 72 hours or if you bleed heavily), have a low body mass index or have an abnormal uterus (Mayo Clinic, 2021).
What causes endometriosis?
Once upon a time the leading theory suggested that endometriosis can be caused by retrograde menstruation (which basically means having a backwards period). Instead of your menstrual blood leaving your body, it ends up flowing back through your fallopian tubes and into your pelvic cavity. This apparently would then allow the 'endometrial cells to stick to the pelvic walls and surfaces of pelvic organs, where they grow and continue to thicken and bleed over the course of each menstrual cycle' (Mayo Clinic, 2021).
However, this theory is actively contested as 90% of individuals born with a uterus experience retrograde menstruation but only 5% to 10% of individuals who are of reproductive age and 2.5% of postmenopausal individuals will develop endometriosis lesions (Chantalat et al. 2020).
Another theory is that endometriosis is caused by peritoneal cells (the cells that line the inside of your abdomen) mutating into cells like those of the endometrium which then once again sick to places in your body where they shouldn't. I won't lie, the science of this went a little over my head but as stated by Burney & Guidice (2013) this process is influenced by hormones and our immune system. Sticking with hormones being the culprit, endometriosis could also be caused by oestrogen causing the stem cells in our bodies to morph into - you've guessed it - cells like those of the endometrium during puberty (Sasson & Taylor, 2008). Once again, the cells then stick to places in your body where they shouldn't and can cause nodules of endometriosis to form.
However, Jernam & Hey-Cunningham (2015) suggest that endometriosis can develop as a result of endometrial cells being transported around the body via the lymphatic system and then are able to implant and grow into endometriosis lesions. There is also research that endometriosis could potentially be caused as a result of a gynaecological surgery or due to an immune disease disorder (Mayo Clinic, 2021).
At the time of posting this there isn't an agreed cause of endometriosis but there does seem to be a number of plausible reasons that could all interlink.
What are the symptoms?
Endometriosis 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.
Common endometriosis symptoms:
Painful periods (dysmenorrhea)
Heavy periods/excessive bleeding
Uterine spasms/cramps
Constipation/diarrhoea
Nausea
Infertility
Painful intercourse (dyspareunia)
Bloating
Lower back pain
Sciatica
Fatigue
Pelvic pain
Painful bowel movements
Pain with urination
I've heard that endometriosis comes in stages, what does this mean?
Developed by American Society of Reproductive Medicine and the endometriosis classification system has four stages. These are based on the location, amount, size and the depth of the endometriosis lesions/tissues. There is a misconception that the higher stage of endometriosis you are, the more pain you are in. This is utterly false! An individual could have stage four endometriosis and have minimal pain whereas an individual diagnosed with stage one may live with debilitating pain which severity impacts their quality of life (Canis et al. 1997).
The stages are:
Stage 1: Minimal (Few superficial implants)
Stage 2: Mild (More and deeper implants)
Stage 3: Moderate (Many deep implants, small cysts on one or both ovaries, presence of filmy adhesions)
Stage 4: Severe (Many deep implants, large cysts on one or both ovaries, many dense adhesions)
I think I have endometriosis, 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. The path to diagnosis can involve having ultrasounds, MRIs and pelvic examinations but you can only receive a formal diagnosis via laparoscopic surgery (if you'd like to know more about laparoscopies click here.)
That being said, it takes an average of 7-8 years to receive an official endometriosis and here's why...
(For a more in-depth explanation click here.)
As part of the social norm, we are programmed to believe that periods can be heavy/painful and that's normal when that's far from the truth. As a result, we are less likely to talk to a doctor about said issues.
Many menstrual health issues flag up during puberty but this is usually blamed on the associated hormones rather than an underlying issue. Furthermore, according to Moen (2017), there are barely any mentions of endometriosis in paediatric textbooks.
The symptoms of endometriosis often overlap with those of other medical conditions such as IBS or hypothyroidism leading to misdiagnosis.
A overwhelming amount of doctors will automatically prescribe the contraceptive pill as a way of 'fixing' the symptoms, if the pill doesn't work, often another brand will be re-prescribed.
Endometriosis is barely mentioned whilst doctors are completing their medical training. Unless they make the decision to specifically train in gynaecology, often doctors often don't think of diagnosing endometriosis (Norman, 2018).
Is there a cure?
Currently, no. Another misconception is that having a hysterectomy will cure you. This is based on the logic that if you remove the source of the problem then the endometriosis doesn't have a source to grow from. Yet, studies have proven that endometriosis contains very high levels of aromatase enzyme, which leads to production of significant quantities of oestrogen. Basically, endometriosis can fuel its own growth (Bulun et al. 2004). This then explains why endometriosis can continue to grow even if you have a partial or full hysterectomy (Rizk et al. 2014).
The other misconception regarding a cure is that becoming pregnant will cure your endometriosis. This is also false and quite frankly, absolutely repulsive advice, especially when you take into account the fact that endometriosis can make conceiving difficult. To clarify, research shows that endometriosis is found in 25% to 40% of infertile individuals and the risk of infertility is increased by 10 when an individual has endometriosis (Prescott et al. 2016) so telling someone to get pregnant can be incredibly harmful and insulting. Again, this misconception is rooted in the thinking that your body will stop ovulating and producing oestrogen as a result and seems to be based on case studies where individuals reported feeling better during their pregnancy (McArthur & Ulfender, 1965), (Freedman, 2017).
Okay so, what about treatment options?
Again this is a general overview of the different methods available to help manage your endometriosis. 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 endometriosis include:
Laparoscopic surgery: This can involve excision (cutting out the endometriosis) or ablation (burning off the endometriosis). This is currently the gold standard for endometriosis treatment. For more information on what a laparoscopy is, click here.
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 endometriosis. Despite endometriosis being able to produce its own oestrogen, hormone therapies can help slow/prevent the growth of an individual's endometriosis (Gheorghisan-Galateanu and Gheorghiu, 2019). 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.
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)
CBD (cannabidiol): For more information on how CBD can help manage the symptoms of endometriosis, click here.
Holistic therapies: Such as acupuncture, sports massage, reflexology, etc.
Hysterectomy (removal of the uterus) or oophorectomy (removal of ovaries)
If you've made it to the end of this post, congratulations! I wanted to provide a thorough and accurate explanation of everything endo and I think I've managed to do so. I'd love to know your experience with endometriosis and if you've found this post useful.
References
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