Endometriosis affects one in ten women – so it’s not surprising that as a Women’s Health Physio I see a lot of women who have endometriosis. Endometriosis (commonly called endo) is when cells very much like those lining the inside of the uterus appear elsewhere in the body, most commonly in the pelvis. Most women with endo first know something is up because they experience severe period pain, which often begins in their teens, but can start earlier or later.
By period pain, I don’t mean the normal ache that is common for the first 1-2 days of a period. I mean pain that is often severe and disabling. Pain that prevents women and girls from doing normal things like attending school, work or sport. Pain that can start a week before the period, last the whole period, and might be present most (or all) days of the month too. That kind of pain is not normal period pain – and don’t let anyone tell you otherwise. Sadly, too many women and girls have their pain dismissed as “just period pain” so it can take an average of 7 years to finally be diagnosed with endometriosis. The best way to diagnose endo is by having a laparoscopy.
While most women and girls with endo will know it is associated with their period pain, many don’t know about the other common symptoms that may occur. Just a note on this – not all women with endometriosis will experience period pain. Not all women with endometriosis will experience all, or even any, of these other symptoms. But there are some common symptoms that a large number of women and girls with endo will experience. Let’s look at what they are and why they occur, so you know what to watch for.
Bladder problems are really common with endometriosis. The most commonly reported bladder symptoms include:
In combination, and certainly if accompanied by pain, these symptoms may be called Interstitial Cystitis, Painful Bladder Syndrome, or Bladder Pain Syndrome. The different names can make it confusing, but are partly related to how the problem is classified and which country you live in. Women with these bladder symptoms can find them extremely debilitating. I have seen women unable to hold down a job or barely able to leave the house as they are going to the loo every 30 minutes. Despite feeling like they are “busting”, many women report when they do get to the toilet, they find it hard to pee at all, or only a really small amount comes out. These problems are often related to increased nerve sensitivity in the bladder and urethra, as we will see soon. However, you can get similar symptoms from a urinary tract infection (UTI), so always get that checked out with your GP.
Bowel troubles are also really common with endo, and can include:
Together, these symptoms may be diagnosed as Irritable Bowel Syndrome (IBS) which can be quite common in women who also have endo. Some women may be diagnosed with other bowel troubles as well, such as ulcerative colitis. Some of these bowel symptoms may also be related to the endo itself – endometrial lesions on the bowel wall can contribute to pain with bowel emptying for example. However, like with the bladder, some bowel symptoms can also be related to nerve sensitivity. So, let’s talk about that a bit more.
Now this is where it gets quite complex, so hang in there.
When anyone has pain present for longer than 3-6 months, it is called chronic pain. Chronic pain changes our nerves over time, so they become more sensitive to signals. Normally, our brain receives many signals all the time. It chooses to pay more attention to some and “dampen down” other signals. In a normal case, our brain only registers a signal as pain if that signal goes over a certain level that may be a threat to the body. For example, a heat pack on your stomach feels pleasantly warm until it heats up over a certain temperature (eg, 45C) at which point it feels too hot. The “too hot” pain is produced by the brain in response to that threat.
With nerve sensitivity, sometimes called “upregulation” of the nerves, nerves in a particular area can be on constant high alert. This may be triggered by regular danger signals coming from that region, for example if endometrial lesions are causing regular inflammation in the pelvic tissues. Upregulated, or sensitive nerves, may start interpreting many normal signals (eg, a heat pack less than 45C) as a threat too, and then pain may be produced by the brain to warn us of the threat.
The pelvic organs have overlapping nerve supplies where the nerves meet in the spinal cord, before they travel to the brain. If one nerve in that area becomes sensitive, it can make other nearby nerves sensitive as well, and so the sensitivity can spread. What this means with endometriosis is that other pelvic organs, like the bladder and bowel, can start feeling sensitive and play up, even when there may be nothing “wrong” with these organs found on tests, because the nerves supplying them have become sensitive. Urgency with the bladder and bowel are commonly related to nerve sensitivity, so it’s not just about pain.
The important thing to note is we can have pain or other symptoms in the pelvic organs, without damage to those organs, because of nerve upregulation or sensitivity. However, nerve sensitivity is only one part of the picture.
Muscle tension in the pelvis can be both a source of pain and contribute to other problems in the pelvis. We are all familiar of the idea of muscle tension in the tops of our shoulders when we have neck pain. Muscles are designed to tense up to protect us when we have pain. The problem is, when pain is chronic, the nearby muscles can be tense a lot of the time. They can become a source of pain themselves (tense muscles hurt) and can also contribute to other symptoms.
In the pelvis, the nearby muscles are in the abdomen (abdominal muscles), hips (buttock muscles), low back, groin (inner thigh muscles) and bottom of the pelvis (the pelvic floor muscles). Any or all of these muscles might become chronically tight (or overactive) with endometriosis, or in fact with any type of chronic pelvic pain. In the case of the pelvic floor muscles, we need the muscles to be tight sometimes (eg, to “hold on”) but to relax at other times, like when we need to empty our bladder or bowel. If these muscles don’t relax well, it can make it hard to empty the bladder and bowel properly, and produce other problems.
Most women with endometriosis associate the abdominal cramps they experience with their endo, but many do not realise their back, hip or groin pain can also be related. The muscles in the abdomen, lower back, hips and groin are all close to the pelvis, so persistent pain in the pelvis may cause the muscles in these regions to tense up as a protective response, as we saw above. The tense muscle may become painful over time.
As well as this, many regions in the pelvis share nerves with muscles and skin in the abdomen, back, hips and groin. Therefore, problems in the pelvis can refer pain to these areas too.
To top it all off, many women with endo become less active because of their pain, making their muscles stiffer and tighter, again contributing to pain. If you have back, hip and groin pain as part of your endometriosis, make sure you see a physio, who can also check these regions to see if they may be problematic for you.
Pain with intercourse is another really common problem for women with endometriosis. You may have heard this called dyspareunia or vaginismus. The pain can be variable – only at the entrance, or only deeper in, but it can include both. Some women who have this problem also find inserting a tampon and pap smears impossible or really painful too. Some women cannot achieve penetration at all because it feels like there is a physical blockage.
While painful sex is common, it is never normal. It does not mean you are “frigid” and you do not have to just lie back and grit your teeth. Most often for women with endo, there is no physical block and nothing to be found on gynaecological examination of the vulva and vagina.
Most commonly pain with sex is related to two main causes:
Always get a gynaecological review with painful intercourse to rule out infections or other causes. But once these are cleared, there is more help available.
The vulva can also become tender with endo due to increased nerve sensitivity. The vulva encompasses the whole outer genital region, including the anus and outer labia. The vestibule is a smaller region of the vulva, that just includes the vaginal and urethral openings and inner labia. Pain in these areas may be called vulvodynia or vestibulodynia.
Common symptoms with vulval pain include:
As with painful intercourse, you should see a gynaecologist to rule out any other causes first.
How our mood affects pain and vice versa is a whole other article (you can read more on the effect of stress on pain in my blog). Pain itself can be pretty stressful, and when it has been going on for some time it can make you feel very low. It is not surprising then that many people with any type of chronic pain, including women with endometriosis, commonly suffer from depression, anxiety and insomnia.
These symptoms unfortunately also feedback into the pain cycle through the production of certain chemicals, including the hormone cortisol, making our nerves even more sensitive. This can upregulate the nerves even more! It’s a really complex system – but suffice to say you are not alone if you have depression, anxiety, insomnia, or other mood problems with endo. They can be treated with professional help from a psychologist who understands chronic pain.
The best treatment for endometriosis involves a team approach including your GP, gynaecologist, physiotherapist, and sometimes a dietitian and psychologist. Treatment options include:
It is important to remember no two women with endometriosis are the same. Treatment should be tailored to the individual. Also, while surgical excision of endometriosis is vital for many women with endo, as you can see from this article, not all symptoms are directly related to the endometrial lesions. Surgery is often only one part of the solution.
Hopefully this helps you to understand that endometriosis is not “just period pain”, and there are many other common symptoms that accompany it, which can be treated. Please come and see me at Life Cycle Physiotherapy if you want individual advice about your problems.
Yours in pelvic health