Surgical treatment for endometriosis is often a necessary and important step, but it is rarely enough on its own to restore the quality of life you had before the disease. For many women, it is a surprising and disappointing experience to find that after a technically successful operation, the pain does not disappear completely - or even remains unchanged. But this is not uncommon, and it does not mean that the operation "failed" or that the pain is "imaginary".
Surgery is a very effective means of removing visible endometriosis foci. However, what is often not emphasised enough is that the pain is not always caused solely by the presence of foci. The body, and in particular the nervous system, adapts to chronic pain over a long period of time. The neural pathways "remember" pain and can respond to minor stimuli over time. For this reason, pain may persist after surgery and in some cases may even become permanent. This is one of the main reasons why surgical success does not automatically mean pain-free. However, it is important to know that the nervous system can change and learn: with the right methods, it can be retrained to feel safe.
Surgery often does not eliminate the accompanying symptoms that have already developed. These may include PMS, migraines, brain fog, chronic fatigue, bloating or other digestive complaints. These are often the result of complex biological processes that surgery alone cannot solve. In addition, all surgical procedures involve the formation of scar tissue and adhesions in the affected areas, which can also cause pain or discomfort. Less commonly, laparoscopic surgery may also cause nerve irritation or increased nerve sensitivity, in which case symptoms may not improve or may even worsen.
In my experience, surgery can sometimes give a false sense of security. Sometimes patients pay less attention to exercise, eating or rest because they feel the problem has been "solved". This in turn can reduce the feeling of control and even increase the chances of a relapse. Lasting improvement is usually not the result of a single intervention, but a longer process in which the patient plays an active role.
Moreover, recovery is not just a physical process. For many women, the experience of surgery, anaesthesia or being vulnerable in hospital can also be psychologically stressful. For some women, the experience is relatively easy to cope with, but for others, the surgery or hospital stay leaves a deeper mark. Psychological processing also has a significant impact on quality of life and the experience of pain.
Moreover, the pain of endometriosis is not a uniform phenomenon. Several types of pain can be present at the same time. Somatic pain may originate in the muscles, tissues or joints, is often sharp or spasmodic and worsens with movement. Visceral pain is caused by irritation of internal organs, is usually dull, pressing or squeezing and is more difficult to pinpoint. Neuropathic pain develops when nerves are affected; it is often described by patients as burning or hot, often radiating to the waist, hip or leg, and often unresponsive to conventional painkillers.
Women with endometriosis often experience a combination of all three types. The pain may be cycle-related at first, but may later become constant or completely unpredictable. The situation is further complicated by the fact that pain is often not considered "real" until years after diagnosis. Instead of support, many patients are told that they are too sensitive or that the problem is "all in their head". But all pain is generated in the nervous system - it is still very real.
The psychological state does affect the perception of pain. Stress, anxiety, a sense of control, what the patient thinks the cause of the pain is or how persistent they think the condition is can all affect the intensity of symptoms. This does not mean, however, that the pain is "psychological". Remember how many times you have been told "it's all in your head"? Well yep, that's pain, all pain is generated in our brain, that's it. Interestingly, peer support doesn't always reduce the experience of pain either, even though it is important in many other ways.
A recent study has added an important new layer to our understanding of endometriosis-related pain. More than a third of women with deeply infiltrating endometriosis and chronic pelvic pain have been found to have neuropathic pain. This is not a rare exception but a common type of pain associated with more severe pain, greater emotional distress and poorer quality of life.
A particularly important finding of the study was that this type of pain was not related to the stage of endometriosis, the complexity of the surgery, or the level of anxiety or depression. This means that more severe pain is not simply the result of a worse mental state, and that the size of the lumps does not determine how much someone suffers. How pain is generated and processed in the nervous system also plays a crucial role.
If this is not recognised, patients can easily get caught in a treatment spiral: more hormone treatments and more surgery, while the dominant pain mechanism remains the same. In many cases, simple questionnaires could identify the presence of neuropathic pain and targeted multidisciplinary treatment would be needed.
A large, multi-year follow-up study followed nearly a thousand women for three years after laparoscopic surgery for endometriosis. The researchers found three distinctive outcomes: some women had almost no pain, others had a significant improvement, but in a third group the pain remained severe three years after surgery. This clearly shows that surgical success does not mean that pain disappears.
The pain associated with endometriosis is often complex and not just "tissue-related". Understanding how pain works in a given patient is as important as understanding where the disease is located anatomically. The two can be very different.
This is also why many patients become frustrated when they continue to experience pain after an operation that has been deemed "successful". Unfortunately, the doctor may perceive this as a personal failure and the patient may not dare to ask questions or seek help. So the "good patient" is often left to deal with his symptoms alone.
The key message is that surgery is an important tool in the treatment of endometriosis - but it is not a complete solution. Lasting improvement often requires targeted treatment of the nervous system, lifestyle changes and psychological support.
Surgery helps many women, but not all. Post-operative pain is a real phenomenon - and it does not mean that the patient is imagining the symptoms. Often it is simply that the pain is rooted not only in the tissues but also in the functioning of the nervous system.
https://www.endofound.org/patientday
7 March New York, Times Square
I'm speaking at the Endometriosis Foundation of America's annual medical conference on why pain often persists in endometriosis even after surgery that is medically deemed successful, and what you can do about it as a doctor/what you can do about it as a woman with endometriosis.
I will make my presentation (in English with Hungarian subtitles) available to members of the soon to be renewed EndoStop Sisterhood. SisterHood will be completely revamped, with live check-ins and the addition of a Book Club and Journal Club.
The price will double from April after the renewal, so it's worth subscribing now to lock in the current low price.
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