Pelvic physiotherapy is an often overlooked critical part of addressing persistent pelvic pain. Pain from any source in the abdomen or pelvis can lead to problems in the pelvic floor muscles. Pain originating from the pelvic floor muscles is best treated by a physiotherapist with specific training in the pelvis and women's health. Pelvic physiotherapists are experts in the interplay between the muscles that control breathing, the core muscles, the upper and lower back muscles and the pelvic floor; and they are the most vital element in treating pain that arising from these muscles. All recent guidelines for endometriosis strongly recommend early referral to pelvic physiotherapy; and it's now recognised that most women with endometriosis will develop some level of pelvic floor dysfunction. 

Local pelvic physiotherapists we strongly recommend are:

• Positive Pelvic Health (Jennifer Dutton), Hutt Valley

• Pelvic Health Physiotherapy (Liz Childs and Associates), Wellington

A TENS (transcutaneous electrical nerve stimulation) machine is a machine that uses electrical current to stimulate nerves to help with pain.

The machine has skin electrodes (sticky pads that can be small or large) that pass electrical current through the skin to stimulate the nerves underneath. This stimulates these nerves and aims to disrupt the pain signals, or get them "lost in the noise" created by the machine. These can be used over the places where you feel the pain (for example the lower abdomen on the front) or directly over some of the nerve roots (at the tailbone). There is reasonably convincing scientific evidence that TENS machines improve chronic pain (there is a good summary here if you want the science). There has been limited evidence specifically in endometriosis, but some studies have suggested a benefit, especially in deep endometriosis.

There are different types of TENS machines, some that are specifically designed for pelvic pain, others more general. There is no good evidence that any are better than others, but some may be easier to use, or more convenient (for example able to be worn under clothes).

A good resources on how to use TENS Machines for pelvic pain is available at Endozone.

There are many options available prices can vary up to around $200 NZD. Some of the options in Aotearoa are:

• Tap

• $109 NZD

• Available online https://taphealth.nz 

• NZ owned and operated company

• Specifically designed for pelvic pain, easy to use

• Sleek design, rechargeable, can be worn under clothes

• Maxcare (The Warehouse)

  • $45 NZD

  • Available at The Warehouse or online https://www.thewarehouse.co.nz/p/maxcare-tens-and-ems-device/R3023067.html 

  • General TENS machine

  • One of the cheapest options

Many patients with persistent pelvic pain aren't taking pain medications in the optimal way. We would generally recommend an approach of paracetamol and an anti-inflammatory (ibuprofen/Nurofen/Brufen, diclofenac/Voltaren, celecoxib, naproxen or Ponstan), both used at the maximum doses during a flare up of pain. If these are both at the maximum dose and more pain relief is needed, then add an occasional opioid (tramadol or codeine), but avoid using these regularly. 

Paracetamol

Paracetamol is often discarded as being not helpful. With pain that is strong and expected to be around for several days or more, paracetamol is never going to cure the pain; it is useful to slightly take the edge off. If pain is sitting at 7-8 out of 10, paracetamol at the maximum dose (2x500mg tablets, four times per day) might drop it back to 6-7 out of 10. That means that other medications, and other ways of relieving pain (heat packs, TENS machines, breathing techniques, etc.) have less work to do. Unless you have a bad reaction or severe liver disease, it is always worthwhile taking paracetamol when you have pain. Paracetamol is very safe with very few adverse reactions or side effects.

Anti-Inflammatories

Anti-inflammatories (technically NSAIDs - Non Steroidal Anti-Inflammatory Drugs) are extremely useful for period related pain. They are pain relief medications, but they also also act directly on the uterus to interrupt the pathway that leads to the uterus contracting, one of the major causes of pain during menstruation (they block the production of prostaglandins, a substance that is tells the muscle in the uterus to contract during a period). For this reason, NSAIDs have been shown to reduce the level of bleeding and pain during a period - which is in addition to the general pain relief effect they have. 

There is no good evidence that any particular NSAID is better than others. Ibuprofen (Nurofen/Brufen) is the most commonly used NSAID. There are many others. Ponstan (mefenamic acid) is marketed as a drug specifically for period pain, but no studies have shown it to be any better than the other NSAIDs (and it is not funded in Aotearoa, making it more expensive than most of the alternatives). Celecoxib is different to the others as it affects the receptors in the stomach less, and so is less likely to cause reflux or pain in the stomach (usually felt as a burning in the upper middle abdomen).

All of the NSAIDs can cause problems with the kidneys and the stomach if taken for a long period of time. Therefore, while they are safe to use at the maximum dose for short periods of times (days or even a week or two), they are not safe to use regularly every day for long periods of time.

Opioids

The next level of drug is opioids. Opioids includes a huge range of medications including codeine and tramadol, as well as stronger drugs such as morphine (Sevredol), oxycodone (Oxycontin/Oxynorm) and fentanyl. Opioids are strong and effective pain killers, but they are addictive substances, unlike paracetamol and anti-inflammatories. This means that the more you use them, the less effective they become. Even after a week or two of using a drug like tramadol or codeine, the effect will be much less than on the first day; and if you stop taking them you will likely start to feel like you need the drug, and may start getting subtle withdrawal symptoms like agitation. This makes them a great medicine to use for sudden pain that is likely to be short lived (like a broken bone from a mountain bike accident), but means they are not great for persistent pain that is likely to last for weeks or longer. For people with persistent pain, very occasional use of opioids like tramadol or codeine can be helpful to get through flares of pain, but the more they are used the less effective they become, and the more likely they are to create a situation where the person feels like they are dependent on the drug, even though it doesn't give them much relief.

Opioids have many side effects, one of which is constipation. Codeine is extremely constipating, and tramadol also causes some constipation. Constipation can cause significant pain, and that pain travels through the same pelvic nerves (the hypogastric plexus) as pain from the uterus and bladder; this means that constipation is likely have a compounding effect on any other pain from the pelvis. For this reason, it is important that anyone using opioids takes laxatives as needed, and uses basic strategies to avoid constipation such as keeping well hydrated and having adequate fibre intake. 

Tramadol and codeine both have an effect lasting around 6-8 hours, while stronger medications are much shorter lived. Sevredol (oral morphine) only lasts 1-2 hours. Intravenous drugs like fentanyl can be much shorter acting - fentanyl generally only lasts about 15 minutes.

Recommendation

For the above reasons we would generally recommend painkillers are used as follows for a flare of pain:

1. Regular paracetamol (2x 500mg tablets, 4 times per day)

2. Regular anti-inflammatories (only one of the following; never combine anti-inflammatories)

Ibuprofen (Nurofen/Brufen) - 2x 200mg tablets, 3 times per day

Diclofenac (Voltaren) 2x 25mg tablets, 3 times per day OR Long acting 75mg tablets, 2 times per day

Naproxen (Noflam/Naprosyn) - 250mg tablet, 3 times per day OR Long acting 750mg tablet, 1 time per day

Celecoxib (Celebrex) - 1-2x 100mg tablets, 2 times per day

Mefenamic Acid (Ponstan) - 2x 250mg tablet, 3 times per day

3. Very limited use of a mild, longer acting opioid, only when the above are not able to control pain, and never for more than few days in row (only use one of the following; avoid combining opioids)

Tramadol - 1-2x 50mg tablets, 3 times per day (avoid long acting tramadol)

Codeine - 1-2x 30mg tablets, 3 times per day

Most patients with persistent pelvic pain and/or endometriosis find that their pain is at its worst during a period. The idea of using contraceptives or hormonal medications is to avoid periods completely, or to reduce the amount of pain and/or bleeding during each period.

All hormonal medications have possible side effects that are difficult to predict and affect every person differently. Most people will be able to find a medication that gives them a benefit with acceptable side effects, but it is common that several medications might need to be trialled to find the right one. 

Combined Oral Contraceptives

These are contraceptives that have an estrogen and a progestogen. They will usually come in a pack of 28 pills, where 21 pills (3 weeks) are the actual medication, and one week is a "sugar pill" that doesn't actually do anything. Taking the sugar pills causes a withdrawal from progesterone that will trigger a period. Skipping the sugar pills and moving straight to the next packet will avoid the period altogether, by avoiding the trigger to start bleeding. Most people will eventually get some bleeding if they do this long enough, but most people will avoid bleeding if they "tri-cycle" - using 3x packets (3x3=9 weeks) back to back without the sugar pills and then having a week of the sugar pills. There are many variations that can work well for different people, but not every combination will work for everyone, if you get breakthrough bleeding, try some of the other options:

• Standard use - 3x weeks active pill, 1x week sugar pill

• Shortened periods - 3x weeks active pill, 4x days sugar pill (then start the next packet)

• Tri-cycle - 9x weeks active pill, 1x week sugar pill

• Continuous use - never take the sugar pills (may get breakthrough bleeding, often best to take a week of sugar pills or no pill if this happens, to "reset" the cycle)

Combined oral contraceptives will stop ovulation. This means any pain or hormonal side effects from ovulation should stop while taking these medications. It also means there is a lower chance of developing ovarian cysts. 

All estrogen containing medications unfortunately carry a risk of causing blood clots; this can mean blood clots in the legs (DVT), the lungs (PE) or strokes. The general risk for any person of child bearing age is around 4 in 10 000. While taking the COCP this is increased to around 7-10 in 10 000. Other factors like smoking, obesity and a strong family history can increase the risk further. People who have migraines with a visual aura (spots, stars, flashes or loss of vision before the headache) should not take combined oral contraceptives as they have a higher risk of stroke. 

The progestogen component can cause other side effects like changes in mood, skin, sore breasts and fluid retention (puffy skin).

There are "older generation" and "new generation" combined oral contraceptives. The older generation pills have a lower risk of blood clots than the newer generation pills, while the newer generation pills are less likely to affect mood, skin and cause water retention. Because the blood clots are higher risk, it is generally recommended to start with an older generation pill, and if the side effects are a problem, then change to a newer generation pill.

There are also different doses of estrogen and progestogens in each pill; sometimes changing to a higher dose can help with breakthrough bleeding, but may be more likely to cause side effects.

Funded COCPs in New Zealand:

Older Generation

• Lo-Oralcon / Microgynon 20 (low dose estrogen 20mcg, older generation progestogen levonorgestrel)

• Oralcon / Levlen / Microgynon 30 / Monofeme (estrogen 30mcg, older generation progestogen levonorgestrel)

• Norimin (estrogen 35mcg, older generation progestogen norethisterone)

• Brevinor-1 (estrogen 35mcg, high dose older generation progestogen norethisterone) - Useful if breakthrough bleeding with lower dose COCPs

Newer Generation

• Mercilon (20mcg estrogen, newer generation progestogen desogestrel) - Useful if side effects with mood or fluid retention with older generation COCPs

• Ginet (35mcg estrogen, newer generation progestogen cyproterone) - Has an anti-testosterone effect which can be useful if skin side effects with older generation COCPs, or other problems related to PCOS; however Ginet has a higher risk of blood clots and stroke than all other COCPs

Progesterone Only Pills

There are three Progesterone Only Pills available in Aotearoa. While all are reliable for contraception, only Cerazette is reliable for controlling bleeding, as it prevents ovulation in 95-97% of cycles (leading to no period). The other two pills available (Noriday and Microlut) may prevent ovulation in about 60% of cycles, which means bleeding can become quite irregular.

Progesterone only pills need to be taken every day to be effective, at the same time. For Noriday and Microlut this means within the same 2 hour window every day; for Cerazette this can be within 12 hours. If the pill is taken outside of this window, it may not be effective.

Cerazette does not often cause side effects, and will often stop periods completely. This is the best option for people who should avoid oestrogen containing medications, for example people at higher risk of blood clotting related problems (those with person or family history of DVT/PE/stroke, people with certain genetic conditions, people with migraine with aura, smokers, overweight people).  

There is lots of information available about the effect of diet on endometriosis and pelvic pain. There have been a lot of studies, but many of them are not of good quality, which makes it difficult to give good advice to patients. There is no strong scientific evidence to support any "endometriosis diet" - but as a general rule any change that you find helpful is probably worth continuing.

Many people try eliminating gluten and dairy as a first line, and most times this isn't particularly helpful. There is no good evidence that people with endometriosis are more likely to have gluten intolerance or coeliac disease than other people (there is a summary of the science available here); but these conditions can definitely overlap, and can both contribute to pain.

Low FODMAP Diet

Irritable bowel syndrome (IBS) is a condition where specific food groups trigger the gut to behave in a way that generally causes bloating and a cycle between diarrhoea and constipation. All of these symptoms are common with endometriosis, and there is an overlap between these conditions. The most effective diet for irritable bowel syndrome is a Low FODMAP diet.

If you are suffering from bloating, diarrhoea and constipation, it may be worth trialling a low FODMAP diet. 

The Low FODMAP diet is very restrictive and difficult to follow strictly. The general approach should be to eliminate all the triggering foods, and then slowly reintroduce things one at a time, with a food and symptom diary to work out if each food is a trigger for you. Eventually once all the triggers have been identified the diet doesn't need to be as restrictive. 

There is a great resource available through Monash University about IBS and the Low FODMAP diet, that outlines what foods to avoid, the science behind it, recipes, as well as an app (not free) that can be helpful.

Dietician

Dieticians are the experts in identifying diet triggers for pain, and can be very helpful exploring and explaining the link between diet and symptoms. Note that a dietician and a nutritionist are not the same thing (a dietician has formal training and is a registered healthcare professional, while there are no rules about who can call themselves a nutritionist).

There are a range of medications that are useful to treat pain by directly affecting nerves. These include amitriptyline/nortriptyline, gabapentin and pregabalin. These medications can be useful for two situations:

• Neuropathic pain (pain originating from a nerve, usually from nerve damage from surgery, birth trauma, or a direct disease process like endometriosis)

• Nociplastic pain (pain that is present without any direct tissue damage, probably arising in the spinal cord or brain, although the exact science is complex and not always clear)

For neuropathic pain, there is good evidence that these medications make a difference, although they can have side effects depending on the medication. Neuropathic pain is not common in people with persistent pelvic pain, but can definitely happen, especially in those who have had previous surgery. Neuropathic pain is often described as tingling, pins and needles or electric shock type pain, and may shoot down the legs or to other places. There may be numbness of the skin or weakness of the muscles associated with this.

For nociplastic pain, the role of these medications is less clear. Some people get a big benefit, but others don't. A high quality study in 2020 showed that giving gabapentin to women with chronic pelvic pain without endometriosis did not make a difference; while some people definitely do find an improvement in their symptoms, this study suggests that these drugs shouldn't be routinely offered to everyone with pelvic pain. 

In Aotearoa, pain physicians are specialists (anaesthetists, gynaecologists, surgeons, psychiatrists, etc.) or GPs who have undergone an additional two year training program with the Faculty of Pain Medicine. These specialists have an interest in persistent pain, as well as training in their chosen field.

Pain physicians may practice in the public sector as part of a chronic pain service, or in private practice as individual specialists. Pain physicians can be extremely useful in formulating ways to minimise the impact of pain on everyday life. They are less focused on finding the diagnosis or underlying cause of the pain, and more focussed on strategies to manage pain effectively. 

Referral to a pain specialist may be helpful for:

• Optimising pain relief medications

• Exploring alternative pain relief strategies to medication

• Discussing the science of pain and educating about how pain interacts with the body

• Exploring the complex interaction between mental health and pain

• Giving strategies to manage flare ups of pain

A chronic pain service may include the above as well as a multidisciplinary team including psychologists, dieticians, physiotherapists, gynaecologists and other specialists; although the availability of such services is very limited in Aotearoa.

The interaction between mental health and pain is extremely complicated. Mood affects pain for all people. Pain also affects mood. Seeing a counsellor or psychologist can be helpful for both of these aspects, especially when there is deep rooted trauma that may be contributing to pain; or where pain is causing a major impact to mental health; or often both.

All kinds of trauma can contribute to pain and impact the experience of pain. This can include sexual, physical and emotional trauma, and may be recent or historical. Exploring this with a psychologist can be an important part of managing pain.

Pain can also lead to a loss of quality of life that can have devastating effects on mental health.

Access to adequate mental health services in Aotearoa is unfortunately extremely limited, especially in the public sector. Crisis teams are available through all public hospital emergency departments, and Lifeline is available to anyone who needs help right now.

People who have persistent pelvic pain often have pain or other problems with sex. Endometriosis and adenomyosis can cause deep pain with sex often felt within the lower abdomen during sex and/or after for hours or days. Pelvic floor muscles also commonly contribute to pain with sex, usually felt more in the vagina rather than in the abdomen. 

Any pain experienced with sex can lead to problems with sexual function, and even if the pain improves, there can be ongoing problems. Many medical professionals are inexperienced and often not comfortable discussing these issues, and people often feel that these issues are left out of the discussion, and never dealt with. Sex therapists are experts at dealing with any sexual dysfunction; they may discuss communication and mental health as well as the physical aspects of sex; they are expertly trained to be professional and discuss things in a way that will be comfortable and non threatening.