Endometriosis — does it have to hurt so much? | Your KAYA

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Endometriosis — does it have to hurt so much?

Endometriosis — a “topical” subject among women these days. I was wondering why the other day. I’ve come up with an idea that in the past (and very often also today) if a woman was in pain, then everything was alright — either because of menstruation, ovulation, or changes in the cycle. We’re living in the 21st century, we go to the Moon, anyone can have a drone in their house, surgeries are performed by robots which are not even in the same country as the patient — why should we then allow for the pain?

7 minreading time • Text: lek. Karolina Rasoul-Pelińska

Endometriosis illustration by Jarek Danilenko

Illustration: Jarek Danilenko

Scientists scrutinise the condition, women point to the symptoms during appointments, and the doctors diagnose the causes of pain. In women of reproductive age it is often the case that endometriosis is the reason.

What exactly is endometriosis?

In a nutshell, it’s about endometrium (the uterine lining which breaks down during menstruation and into which the embryo attaches itself) which is located outside the uterine cavity. And this is where it all goes nuts, because apart from the fallopian tubes, ovaries, or the abdominal cavity endometrium may also be transported to the intestines or lungs. If you’re after a caesarean and your period makes you curl up with pain in place of the scar — yes, this is endometriosis. And as far as transporting the endometrium to subcutaneous tissue during a caesarean, laparoscopy, or stitching after vaginal deliveries may be easily explained, how, in heaven, does it get to the intestines or other places, totally unrelated to the reproductive system? There are many theories, some more and some less plausible, as the scientists have been racking their brains about it since 1690 (D. Shroen’s first account of endometriosis). One of such theories pertains to retrograde menstruation which means that the blood and broken-down endometrium, instead of going through the cervix to the vagina, flows through the fallopian tubes up to the abdominal cavity. Another theory talks about dysfunctions originating during the organogenesis and the development of the reproductive system, and yet another claims that all women “have” endometriosis and only in a percentage their immune systems aren’t strong enough to “clean up” endometrium from places it’s not supposed to be in. 

How do I know if I have endometriosis?

It often appears in the form of cysts, which, due to the colour of their contents, are called chocolate cysts (yum! :)). They stand out during an ultrasound scan so we may start with this test. Another type of endometriosis which (sometimes but not always) can be diagnosed, or at least raise suspicion, during an ultrasound scan, is adenomyosis — that is, to put it simply, endometriosis of the muscular wall of the uterus. Another helpful test in diagnosing the disorder is an MRI. It’s worth remembering, though, that sometimes endometrial cysts take the form of tiny spots on our peritoneum and imaging tests may fail to detect them. The only way to be certain is to undergo a histopathological examination for which the tissue sample is collected during surgery — usually laparoscopy. During the procedure our doctor can also take a look at the entire abdominal cavity and assess if there are no additional endometrial implants on our intestines or the aforementioned peritoneum. Then it’s possible to classify the stage of endometriosis according to the ASRM (American Society for Reproductive Medicine) criteria. What are the 4 stages of endometriosis? The ASRM distinguishes four of them: minimal, mild, moderate, and severe. In short, the differences between them pertain to the distribution, size, and depth of the implants or lesions covering the patient’s internal organs.

Painful disorder

Endometriosis hurts. If you want to know how painful endometriosis actually is, ask someone who has it. The answers will obviously differ because our pain thresholds vary. But where is the pain felt and what are the most common symptoms? Beside the typical symptom of severe pain during menstruation (described by those with endometriosis as far worse than “normal”), which is often underestimated and ignored, patients suffering from endometriosis often complain of PMS symptoms, painful sex, problems with getting pregnant, gastrointestinal or urinary system disorders. Which is why I must reiterate this: keep an eye on your body because symptoms which often appear unrelated to the uterus (and its surroundings) may suggest the future diagnosis.

Treatment

Treating endometriosis is not an easy task. Despite numerous studies, including clinical trials, we have not yet fully understood what causes the disorder. We know that it’s strictly connected to the immune system but the details still elude our grasp. There are many leads which scientists try to follow but we’re lacking one concrete pathway to the solution. Which is why pharmacological treatment of endometriosis depends chiefly on alleviating the symptoms and not the disorder itself. Applying nonsteroidal anti-inflammatory drugs may cause the symptoms to be less intense but they rarely eliminate them entirely. Hormone therapy proves helpful very often (progesterone derivatives or its receptor modulators, gonadotropin-releasing hormone analogue, contraceptive pills, aromatase inhibitors, danazol etc.). New medications are constantly being developed and some, in the first phase, have shown promising results in fighting the symptoms of endometriosis — it’s possible to undergo treatment with these new drugs as part of clinical trials in a number of medical practices. A recent development for endometriosis-related symptoms is the cannabidiol treatment. The numbers of female patients using CBD (usually in oil form) as analgesics are growing and scientists study the substance to check if it’s helpful in alleviating other endometriosis-related symptoms.

Surgery?

If pharmacology won’t help, the next step that your doctor advises you to take is surgery. The procedure consists in removing the changes (cysts or spots on the peritoneum) and sending them for further histopathological tests. As I’ve mentioned earlier, most often it’s laparoscopy and, as there are usually no problems with cysts in regular hospitals, if you’re in a more advanced stage of endometriosis or you’ve already undergone a similar surgery, you should head straight to a facility that specialises in this specific disorder, or at least find a hospital with specialists in the matter. As I’ve mentioned numerous times before, every gynaecologist can deal with everything but each one of us may be interested in different issues :)

What more you can do

Other ways of dealing with endometriosis are, the so-called, non-medical steps, that is: changing your diet, introducing physical exercises, yoga, or acupuncture — which are sometimes underestimated. Women suffering from endometriosis are more prone to having various food intolerances, allergies, or the irritable bowel syndrome, which is why their diet should be modified accordingly, with particular exclusions, or simply light (when there are cysts on the intestinal walls). More and more often doctors recommend an anti-inflammatory diet, based on the Mediterranean diet, which is to “dampen” the constant inflammation in our organisms caused not only by endometriosis but also, for example, by highly processed foods in our daily menu. There are many books and guides on the anti-inflammatory diet so everyone can find something that’ll suit them. Physical exercises, like yoga, do not only contribute to the improvement of our mood and overall health but also cause relaxation of muscles and the pelvic region, as well as partial relaxation of intraperitoneal concretions, which very often occur in endometriosis. As far as acupuncture goes, it’s applied to alleviate the pain accompanying the endometrial symptoms. Remember to choose a tried and tested specialist with a positive reputation!

What happens if endometriosis is left untreated?

Endometriosis doesn’t resolve on its own. Apart from the symptoms getting worse, if left untreated, the disorder may lead to infertility. Additionally, patients with endometriosis have a higher risk of developing ovarian cancer, which is the most deadly type of gynaecological cancers with more than 60% death rate.

Endometriosis and pregnancy

It’s particularly difficult to treat endometriosis in women who’d like to get pregnant. We won’t be feeding them contraceptives and waiting for better times. If it’s possible, it’s advisable to remove the macroscopic changes in laparoscopy which, in the majority of cases, is enough to create conditions for pregnancy. Unfortunately, more severe cases demand the additional pharmacological treatment, and sometimes assisted reproductive techniques. It’s important to trust yourself in the hands of a specialist.

Final words

Endometriosis is an issue on which dozens of research papers have been written. There are also numerous books written in a more reader-friendly tone that deal with the disorder in its various aspects. It’s a multivariate condition — on the one hand, it’s mild, on the other — recurring and (in very rare cases) metastatic. As of yet, there are no straightforward answers for the key questions, however, we know a lot about the disorder and our knowledge has in recent years expanded dramatically. Let’s hope that we won’t slow down the pace in our efforts to look for answers and that life with endometriosis becomes easier.

Sources

1. Johnson, N. P., Hummelshoj, L., Adamson, G. D., Keckstein, J., Taylor, H. S., Abrao, M. S., Bush, D., Kiesel, L., Tamimi, R., Sharpe-Timms, K. L., Rombauts, L., Giudice, L. C., & World Endometriosis Society Sao Paulo Consortium (2017). World Endometriosis Society consensus on the classification of endometriosis. Human reproduction (Oxford, England), 32(2), 315–324. [LINK]

2. Evers J.L. (1994). Endometriosis does not exist; all women have endometriosis. Human reproduction (Oxford, England), 9(12), p. 2206-2209.

3. Reinert, A., Hibner, M. (2019). Self-Reported Efficacy of Cannabis for Endometriosis Pain, Journal of Minimally Invasive Gynecology, 26(7).

4. Schwartz, B. (2020). Leczenie bólu związanego z endometriozą za pomocą konopi. Ginekologia po Dyplomie, 03. 

About the author

Karolina works at a clinic specialising in gynaecological oncology and is on duty at the labour ward. Additionally, she’s an active member of Klub Młodych Ginekologów Onkologów (The Club of Young Gynaecologists Oncologists). In her PhD, she studies metastases in endometrial cancer. She chose gynaecology because she wanted to take care of women who often take care of themselves only after they’re done with everything else. She works 11 months a year so that she can jump on a plane and venture into the jungle. She’s our expert on intimate health.

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