Pelvic Pain - dealing with more than just the tip of the iceberg
There is now fortunately more and more awareness of pelvic pain and especially endometriosis in women. However on the flipside this means that sometimes endometriosis lesions and surgery get all the attention while the potential causes of endometriosis and other extremely important factors that are as much of a cause or more for pelvic pain, get left out of the conversation entirely.
The result is, many women who continue to have pain despite surgery, and many women who are left feeling lost and unvalidated if their surgery did not reveal endometriosis and yet they still experience pain.
As a gynaecologist who supports women with pain every day I am passionate about opening up this very narrow view on pelvic pain and shining the spotlight on the other factors that drive pain. These factors include:
Endometriosis
Gut microbiome disturbance/intestinal hyperpermeability – Immune dysfunction – increased inflammation
Trauma
Pelvic floor muscle dysfunction
Upregulation of pain pathways and the nervous system
Endometriosis is a condition where the endometrial tissue that lines the uterus grows outside of the uterus on the wall of the pelvis, on the ligaments supporting the uterus, on the ovaries and sometimes on the bowel and bladder.
These lesions grow when exposed to estrogen and usually regress when exposed to progesterone – although they often more resistant to progesterone than normal endometrial tissue.
Endometriosis has complex and multifactorial origins where the immune system as well as genetic predisposition and environmental factors play important roles in determining who develops the condition.
While the exact cause of endometriosis is uncertain, a number of theories exist and it is likely that several factors contribute to the formation of endometriosis. We know that women who have a family history of endometriosis have a 7-8 times higher chance of having endometriosis so genetics play a big role. One theory is that menstruation backwards through the tubes and into the pelvic cavity make endometriosis more likely, however we know that almost 100% of women have some degree of retrograde menstruation so this is not the whole story.
Another theory is that cells lining the pelvis undergo changes that convert them into endometrial cells or that endometrial cells are spread via blood or the lymphatic system.
Like the endometrium inside the uterus, the endometriotic implants swell and react to the monthly hormonal cycle. The cells grow and become thicker under the influence of oestrogen and bleed when there is a drop in hormones that corresponds to menstruation. When endometrial cells bleed there is a release of prostaglandin and other inflammatory cytokines – compounds that irritate pain fibers in the area and increases pain. The body responds by surrounding the affected area with scar tissue and inflammation. The formation of scar tissue (adhesions) may result in damage to other pelvic structures and may cause these to stick together. Endometriosis can be deep and infiltrating or mild and superficial. Interestingly the degree of severity of endometriosis does not correspond well with the amount of pain women experience. Some women experience debilitating pain and have only a small amount of endometriosis and some may have no symptoms at all and have severe disease. This is a further clue that merely the presence of endometriosis is not the whole story and that the amount or sensitivity of pain nerves could play a role in how different women experience endometriosis.
Endometriosis at its heart seems to be a disease of inflammation and impaired immunity. So while all women virtually experience flow of endometrial tissue in the pelvis – only women with an impaired immune system have the increased inflammation seen in significant endometriosis.
There have been studies that have showed that up to 50% of women with no symptoms have evidence of endometriosis lesion at laparoscopy – so in a way, mild endometriosis that is dealt with swiftly by a well functioning immune system is likely a physiological finding or a normal part of being a menstruating person. It is when the immune system becomes dysregulated due to environmental and or genetic factors that can upregulate inflammation and pain.
Merely diagnosing endometriosis at an operation which is likely more common than we are told may be a red herring in the actual cause of pain, and if lesions are removed it is akin to removing the tip of an iceberg, as the factors which contribute to the formation of endo in the first place may be unaddressed.
Endometriosis and Pain Graphic ©Peta Wright
One possible factor in the dysregulation of the immune system may be due to a disrupted gut microbiome. The gut microbiome is responsible for maintaining a thick mucous layer to protect the single layer of cells in the lining of the gut wall that separates the inside of the intestine from 90% of the body’s immune cells on the other side. If the gut microbiome is disrupted such that the mucous layer is compromised, gaps can appear in the gut lining that enable bacteria and toxins to interact with the immune cells. Substances such as LPS (lipopolysaccharide), a part of a bacterial cell wall has been known to induce immune dysregulation and cause increased inflammation in the body. In fact LPS has been found in the pelvic fluid of women with endometriosis.
LPS could possibly enter the pelvis through the vagina and uterus if the vaginal microbiome is unhealthy as well. It is not clear which is true for endometriosis but there is evidence for an altered microbiome in women with endometriosis. IBS and gut symptoms are much more common in women with endometriosis and it is likely that the gut microbiome dysfunction drives the immune dysfunction and inflammation of endometriosis – not the other way around. ‘Endo belly’ is probably due to the altered microbiome and leaky gut wall than to endometriosis lesions in the pelvis.
What can contribute to microbiome dysbiosis and leaky gut? Factors such as an inflammatory diet, exposure to endocrine disruptors and other toxins, lack of sleep and circadian rhythm disruption and stress. Stress is a major one. Stress leads to increased cortisol which has a direct effect on the microbiome and hence mucous layer and gut wall. This may be acute stress but for many of the women I see with long standing pelvic pain – it can be years of an upregulated sympathetic nervous system than may have stemmed from an early trauma.
Not only can a dialed up sympathetic nervous system from an early trauma affect the gut, impair the immune system and increase inflammation it has been shown through studies such as the ACE (Adverse childhood events) study, that early childhood and adolescent trauma hugely increases the chance of chronic disease in later life – possibly as a result of some of these mechanisms.
Once the sympathetic nervous system is dialled up to be on high alert to keep you safe – other parts of the nervous system such as our pain pathways can be dialed up too. So that pain signals in the body are amplified. The brain can then become used to receiving these continuous pain signals and become ‘sensitised’ which means that the pain messages received in the brain become further amplified and pain and discomfort to any stimulus in the body (even something that most people wouldn’t feel or may just feel as a sensation) become severely painful.
This is often part of why women who started off with just pain around the time of their periods start to have pain every day or after the endometriosis lesions are removed.
The other huge factor in pelvic pain is pelvic floor muscle dysfunction. This is when the muscles that line the pelvis become tight and prone to spasm. This often results in sharp stabbing pains. It can start as a protective mechanism – when your pelvis hurts you unconsciously tense the pelvic floor – which then contributes to ongoing pain. It can also be part of a trauma response and for many women the pelvis is where we hold trauma, stress and tension in our bodies.
Pain is multifactorial and simply looking for and removing endometriosis lesions is selling many women short. Before you have surgery, ensure you have discussed the bottom of the iceberg with your doctor and have a plan to identify and address the other factors that are unique to you. Only when your pain is addressed from this holistic perspective can you be empowered with the tools to move beyond it. If we are focused only on surgery and suppression of women’s cycles we are missing so much in the drivers of pelvic pain and disempowering women to think that the solution is only outside of themselves with invasive procedure that’ must be done to them’ or drugs to switch off hormones. While these things can be part of the treatment – alone – they are often not enough. Remember the base of the iceberg and the power that resides within you on a daily basis. Building the right team of people to support you but not fix you (you don’t need fixing – you are whole and amazing as you are) is crucial.
