Spotlight on neglected period and pelvic pain

As doctors, we need to move away from a surgical approach to period and pelvic pain and instead refocus on validating women’s symptoms and giving them back their autonomy.

Period and pelvic pain has been recognised by the World Health Organization as a neglected area of women’s health. It is known to affect the lives of up to 25% of women (here). It has an impact not only on their health, but on their relationships, education, employment and social engagement. Up to 90% of adolescents experience period pain, 20% of whom miss out on school, sports and social activities (here).

Much of the medical and social messaging advocating for improvement focuses on endometriosis, which is assumed to be the major cause of this pain. However, we have known for years that only 50% of people who undergo a laparoscopy for pelvic pain will have endometriosis (here). Furthermore, endometriosis lesions can be found in a similar proportion of people who do not have pain. The fact that women experiencing pelvic pain with and without lesions have exactly the same symptoms is the reason why a diagnosis cannot be made by asking about pain and symptoms (here, here and here).

Endometriosis is acknowledged to have a broad range of negative effects on women’s lives. However, these effects, including on mental health, relationships, capacity to study, employment and the associated comorbid pain syndromes, occur equally often among women with pelvic pain and no endometriosis (here). Likewise, central sensitisation to pain occurs equally in women with and without endometriosis (here).

It is widely recognised by doctors that there is no correlation between the severity and site of pain and the severity and site of endometriotic lesion (here and here). However, the community may be less aware that operating and removing endometriosis is often ineffective in improving pain (here and here).

We have neglected to listen to the science

The evidence regarding surgery for endometriosis is poor (here and here). There have only ever been three small randomised controlled trials, involving a total of 171 women. These trials compared laparoscopic surgery (where endometriosis was treated) with diagnostic laparoscopy only (here and here). These studies had short follow-up times for what is usually a long term condition.

No studies have compared the outcomes of women with pain who had a negative laparoscopy; that is, no visible endometriosis.

There are no published head-to-head trials yet that compare low cost and low risk treatments (such as medications and/or physiotherapy) with the high cost, high risk approach of surgical intervention. This question requires further research (here).

In comparison, consider the evidence for surgery for musculoskeletal pain about which Ian Harris and colleagues have published extensively (here). In the past, the attitude and approach to low back pain was that that any back pain meant “something was wrong”, that movement risked worsening the pain, that you were at risk of becoming disabled. It meant that you needed to have investigations (a computed tomography or magnetic resonance imaging scan), and then have someone fix it (here and here) by spinal fusion, steroid injection or discectomy. Nowadays, the evidence encourages a vastly different approach (here). We now know that by telling people about incidental findings such as degenerative changes, disc space or facet joint narrowing, we actually reduce their likelihood of recovery (here). These radiological changes are equally present in people without low back pain (here). We now know that the more we can reassure a person experiencing low back pain, the more likely their pain will resolve. Arising from this evidence, social messaging has changed. It empowers the individual with the capacity to maintain autonomy and has shifted towards “keep moving”, see a physiotherapist, avoid surgical interventions.

Thus, the question is, why are we neglecting the symptoms of our adolescents and young women, allowing their periods and pelvic pain to ruin their lives? Why have we failed to translate any of what was learnt from low back pain to pelvic pain? Why are we still in the era of surgical intervention for pelvic pain? Of telling women they have an incurable condition. Why have we not listened to the evidence?

Undoubtedly, there are additional physiological mechanisms involved in pelvic pain. Endometrial shedding is an inflammatory process. It requires the release of inflammatory cytokines and vasoactive substances. These chemicals are also nociceptor stimulators. Repeated stimulation potentially contributes to the development of chronic pain and central sensitisation (here). This potentially makes period and pelvic pain, with this repeated physiological trigger, different to other chronic pain conditions.

Yet despite this knowledge and the lack of evidence to support the link between pain and endometriosis, we go on telling our patients that they have endometriosis and that this is causing their pain. We amplify women’s anxiety by focusing on endometriosis as a chronic lifelong pain condition, that is difficult to diagnose, that might make them infertile. With all this associated misinformation we are potentially causing iatrogenic harm, when we should be encouraging women to tackle the underlying issues that are contributing to their period and pelvic pain.

Low risk/low cost alternatives

Randomised controlled trials have shown that using continuous oral contraceptive pills rather than cyclic oral contraceptive pills for pain after surgery reduces pain recurrence (here). They show that the levonorgestrel-releasing intrauterine systems after endometriosis surgery reduces pain recurrence (here).

We have ignored the evidence from a Cochrane review that dysmenorrhoea is helped by exercise (here). We ignore the evidence that dysmenorrhoea is worse in women who have had more childhood traumatic events (here) and catastrophic worry (just as they do for other chronic pain conditions). We ignore the evidence that a multidisciplinary team approach works for period and pelvic pain.

This is not a problem that requires a gynaecologist with a scalpel, it requires a team. The woman, her general practitioner and a physiotherapist can solve this problem for most. Some need the backup of a multidisciplinary team, and that’s okay. Both the period pain and the heavy bleeding (often associated with painful periods and a known risk factor for endometriosis) can be addressed with tranexamic acid, non-steroidal anti-inflammatory drugs and hormonal approaches including the levonorgestrel intrauterine device. Ovulation pain can be addressed with hormone-based solutions (but not usually the levonorgestrel intrauterine device). The muscular aspects of pelvic pain can be effectively treated (in most women) by physiotherapy and exercise. For some women, there may need to be input from other clinicians: a dietitian for gut-related symptoms and a counsellor or psychologist for poor sleep, depression, anxiety and previous trauma events. Thus, control is handed back to the individual woman and her GP, rather than the solution lying at the edge of a scalpel.

My sympathy and support go to the women experiencing pain. So too to their hard-working GPs.

Women are under extraordinary pressure from social media to seek a laparoscopy. Many see having a laparoscopy and getting the diagnosis of endometriosis as the only way to achieve validation of their pain experience. My sympathy goes to the GPs too, who have been taught that endometriosis is the main cause for period and pelvic pain. And it’s the GPs who end up caring for women whose laparoscopy finds no endometriosis.

We are failing to educate not only doctors but the wider community. Simple and very effective ways exist to manage period pain. To manage heavy periods and everything else that might occur cyclically: from asthma exacerbations, vomiting, feeling faint, dizziness, reduced diabetes control, and even anaphylaxis. That is, the use of the oral contraceptive pill continuously (here and here). By skipping periods, we prevent the release of inflammatory mediators that control menstrual bleeding. We’ve all heard the argument that menstruation is natural, but pregnant and breastfeeding women don’t bleed. In the past, women had ten to 15 babies, breast-fed them all and had less than one-quarter of the number of periods women currently experience (here). Not having many periods was the “natural way” women lived.

I also acknowledge the response we hear from our patients who have tried one or several different pills unsuccessfully. Often, they’ve experienced side effects. But like shampoos, there is no one shampoo that suits everyone. When we dislike a shampoo, we simply try another. Likewise, there is no perfect oestrogen or progestogen that suits everyone, it needs to be individualised.

We need to give women the evidence and their autonomy. To move away from a surgical approach to period and pelvic pain. We need to move away from focusing on lesions of endometriosis and making this the scapegoat. Instead, we need to refocus on validating the symptoms. Start listening to and validating adolescents with their period and pelvic pain. We need to focus on the neglected problem in a manner that helps women manage the problem with her primary care clinician and a team of health professionals.

Professor Sonia Grover is a gynaecologist and a pain medicine specialist at the Royal Children’s Hospital and Mercy Hospital for Women, and a Research Fellow at the Murdoch Children’s Research Institute.

The statements or opinions expressed in this article reflect the views of the authors and do not necessarily represent the official policy of the AMA, the MJA or InSight+ unless so stated. 

Subscribe to the free InSight+ weekly newsletter here. It is available to all readers, not just registered medical practitioners. 

If you would like to submit an article for consideration, send a Word version to mjainsight-editor@ampco.com.au.