The Kids Aren’t Alright – Part III

One of the biggest challenges in endometriosis today is the reduction in the time to diagnosis. Depending on where you are and what healthcare access you have, the time from initial onset of symptoms to diagnosis can be between 4-7 years (on average, but I’ve known individual cases which can be as short as a few months, or as long as 25 years). Obviously this is a continuing and serious issue affecting women with endo - delayed diagnosis means delayed treatment which means prolonged suffering. Of course it’s all very well and good me saying that diagnostic times need to improve, but how might that actually be achieved?

Awareness and education about endometriosis for both young girls and medical professionals is a great way to improve knowledge about the condition and therefore raise the bar in terms of quality of care received. It’s heartening to see that all the hard work of patient advocacy groups and charities has noticeably increased the presence of endometriosis in the collective consciousness. In the UK I’ve noticed far more awareness and promotion of endometriosis in just the last six or seven years. By some measures this appears to be working – in one study conducted in the US girls and women under 18 and over 18 with endometriosis were surveyed about their experience of the disease so far. The average time between symptom onset and surgical diagnosis for the under 18’s was 2 years, for the over 18’s this was 5 years. Hopefully this represents a trend of decreasing diagnostic delay for the future.

One of the key steps here is increasing endometriosis education for young girls (and it should be said, boys too). Why is educating young girls so important? A survey of over 4,000 adult women with endometriosis found that 67% experienced the onset of symptoms during adolescence. I’ve included some links at the bottom of this article that show endometriosis is not a disease of the ‘career woman’ as was the harmful stereotype for so long, it is a disease of the young girl, which becomes a battle for the adult woman.

Education of course would entail teaching girls about the signs and symptoms of endometriosis, along with how it is managed and treated. However, we’re making an assumption that endometriosis symptoms are the same in young women and adults. Several small studies in the past have been inconclusive as to whether adolescent endo is the same as adult endo in terms of symptoms and characteristics of the endometriosis lesions themselves. Some studies indicate that the physical appearance of endometriosis lesions in younger girls tends to represent ‘earlier’ stages of the disease, with atypical, subtle or red lesion types being more common in adolescents. This indicates that 1) endometriosis in young girls may be extra difficult to diagnose due to subtly of the disease, and 2) endometriosis may be progressive, becoming more advanced with age, highlighting a requirement of early intervention for effective pain relief and preservation of future fertility.

A larger systematic review of studies into adolescent endometriosis looked at results of multiple studies into the stages of endometriosis in adolescent and adult women, their findings are represented on the graph below

Adolescent data is that of those girls without failure of hormonal suppression. Adult data taken from this study,

So, while advanced stage endo does occur in adolescents, it is less common than adults. A larger study on the symptoms of endometriosis in women and girls under and over 18 found that, overall, there weren’t many significant differences in the symptom profiles, indicating symptoms of endo tended to be similar in young and adult women. Some of the key symptoms that were more common in adolescents were: non-cyclic pain that did not get better with hormone treatment, and nausea accompanying pelvic pain. These authors also found that, like adults, pain in adolescents interfered with school, work, socialising and sleep, but gastrointestinal symptoms also significantly interfered with these daily activities too. Young girls may find discussing symptoms related to periods, menstruation and gastrointestinal problems embarrassing, therefore are unlikely to openly talk about them. It is therefore important for educators, parents and doctors to have the information in these studies available to give to their children.

So far this post has focussed on the symptoms and type of disease found more frequently in young women and girls with endo. But what about the way in which endometriosis affects their lives? A recent study investigated this by giving quality of life surveys to 360 girls with surgically confirmed endometriosis (cases) and 207 girls with no history of endo (controls) between the ages of 10 and 24.

The quality of life surveys came in two parts, first a physical health component that covered: general health, bodily pain (limitation due to pain), role limitation (problems with work/daily activities) and physical functioning (the ability to perform any physical activity). Secondly, a mental health component that covered: mental health (feelings of anxiety and depression), role limitation – emotional (problems with daily activities due to emotional health), social functioning (interference with social activities due to physical and emotional problems) and vitality (levels of energy/fatigue).

The results of this study showed that the case girls scored significantly worse in every component on both physical and mental health aspects. This was particularly noticeable for general health, bodily pain, role limitation, social functioning and vitality.

A particularly interesting finding was the prevalence of anxiety and depression in young women in this study. The graphs below shows the percentage of participants reporting anxiety, depression and exercise avoidance during menstruation.

As you can see, young women with endo suffer more with mental health conditions and will withdraw from physical activity during menstruation far more than their endo-free counterparts. It is well known that anxiety and depression are more common in adult women with endo than adult women without endo, but seeing that this trend starts so early in life highlights how important early intervention for endometriosis are, not just for physical health, but mental health too.

Perhaps unsurprisingly, this study found that pain was the biggest impactor of quality of life in young women. Pain appeared to be the only factor in this study to be linked with a decrease in mental health quality of life score too. What is quite interesting is that lower quality of life scores, in particular for physical health, were also associated with starting periods before the age of 11. Another interesting finding was that underweight girls with endometriosis had lower physical quality of life scores than their normal weight counterparts. The reason this is interesting is that it fits with other research suggesting that lean or underweight body size during childhood is associated with an increased risk of endometriosis as an adult.

The question therefore arises, does low body weight cause an increased risk of endometriosis, or does endometriosis cause a low body weight in young women? Although there isn’t much research available to answer this question, one study (using a mouse model of endometriosis) suggests that endometriosis is associated with altered gene expression in the liver, leading to altered metabolic activity favouring leanness. Whether or not this is true in humans, remains to be seen.

Although this has not been a comprehensive examination of all the literature related to endometriosis in young women, we have seen that the signs of endometriosis can present at an early age, and that the symptoms of the disease can be just as bad in childhood as they are in adulthood. Given the negative impact that endometriosis can have on a young person’s life both physically and mentally, recognising the signs of the disease, treating girls’ concerns as valid and giving them effective treatment is the only way endometriosis can be tackled for future generations.

  

Want to know more? Here are some links to selected free articles on endometriosis in young women

Endometriosis in Adolescents is a Hidden, Progressive and Severe Disease that Deserves Attention, not just Compassion

Clinical Profile of Young and Adolescent Women with Laparoscopically Diagnosed Endometriosis in a Singapore Tertiary Hospital

Endometriosis in Adolescents

               

Bowel Surgery for Endometriosis

Hello again readers, 2018 is rapidly drawing to a close and I’m making an early new year’s resolution to update this blog more often, it is called ‘endometriosis update’ after all and I feel I haven’t been doing enough updating.

I recently had the pleasure of being invited to the Endometriosis Research Now! Conference in London organised by Endo UK, the World Endometriosis Research Foundation and supported by the Wellcome Trust. I gave a talk on the way in which scientific evidence about endometriosis is portrayed and how we can critique this evidence (pretty much everything I covered in this post from earlier in the year). It was a great day meeting other endo specialists and hearing the voices of women with endo to learn more about what I can do to further awareness. More on that to come in a later blogpost though when all the promotional material has been sorted by Endo UK.

For the subject of this post I’m going to talk about a recent study analysing the results of bowel surgery in women with endometriosis. You can read the full text of the source article here for more detailed information about the study.

Some forms of endometriosis can penetrate deep into the pelvic organs, one site in which this can occur is the tissue that divides the vagina and the rectum, called the rectovaginal septum (you can see some common sites of rectovaginal endo here, and learn more in the yellow fact box below). This form of endo can present a particular set of challenges when it comes to management and treatment of the disease. Evidence is mixed concerning the effectiveness of medical therapy for rectovaginal endometriosis, so surgery is often recommended as the preferred treatment choice. But what are the outcomes of this surgery, and how effective is it at managing symptoms of the disease?

A recent study published in the British Medical Journal examined data from 4,721 women undergoing planned surgery for deep rectovaginal endometriosis between 1^st January 2009 and 30^th June 2016 in centres belonging to the British Society for Gynaecological Endoscopy ‘Endocentres’ (specialist endometriosis treatment centres where patients are treated in multidisciplinary teams and surgeons audit their outcomes. For a list of such centres, see this link).

The authors of this study recorded a lot of information on these patients, in particular their pain levels, symptoms, bowel functioning, drug treatments, surgery complications, and quality of life surveys called the EQ-5D-3L (EQ5D) and the EuroQoL Visual Analogue Scale (EQVAS). All this data was recorded before surgery and at 6 months, 12 months and 24 months after surgery to see how/if any of those recorded factors had changed.

Let’s get right into the findings, starting with pain symptoms. For this study they asked the patients to rank their pain on a scale of 0-10, with 0 being no pain at all, and 10 being the worst possible pain.

Below are some graphs showing the average before and after surgery pain scores for different symptoms in the patients who participated in this study

It’s good to see that, on average, the pain scores decreased for all types of pain symptoms after 24 months post-surgery. In particular, cyclical and non-cyclical dyschezia (painful bowel movements) were lowered, although cyclical dyschezia did seem to increase slightly again after 2 years. Whether this represents a return of the disease or not requires further study.

So, pain symptoms are reduced after rectovaginal surgery, does this translate to improved quality of life? The graphs below show scores representing results of the two different quality of life surveys (the EQ5D and the EQVAS). The higher the number of each score, the better the average quality of life.

In both cases these scores increased and remained higher after surgery. This means factors like levels depression and anxiety got better, mobility increased and ability to do daily activities increased too. 

Another way to assess whether or not the results of the surgery was successful, is to look at the use of medication before and after the surgery. The graphs below show the different types of medication the women in this study were using (i.e. paracetamol, NSAID – non-steroidal anti-inflammatory drugs like ibuprofen, or opiates like codeine) and the average percentage of people using that medication type before and after their surgery.

Overall the use of any type of pain medication, on average, fell sharply at the 6 months after surgery point, but crept back up slightly at the final 2 year point. This is consistent with some of the other graphs showing slight pain recurrence at the same 2 year point. While the use of pain medications is reduced after surgery, for paracetamol and NSAIDs their use still hovers in the 50-60% range, meaning more than half of women still needed to take pain medication. Whether the continuing need for pain medication is just due to rectovaginal endometriosis related symptoms, or to other types of endo, or other conditions all together, needs further clarification.

One of the tricky parts of rectovaginal surgery is that it can deal with operating on a particularly challenging organ – the bowel. Your bowels are in pretty heavy use all the time and work hard to move digested food where it needs to go. So operating on this sensitive part of the body can, rarely, result in complications arising during, and after surgery. Below is a diagram showing the percentage of perioperative complications, that is, complications arising during surgeries in this study.

 As you can see, the vast majority of surgeries went without complications. Of the few complications that did arise, the majority were unexpected injuries, or the need to covert the laparoscopic surgery to laparotomy. Both of these are manageable by a multidisciplinary team such as the ones used in this study and, although it means further monitoring of patients after the surgery is complete, it wouldn’t necessarily mean the patient didn’t get a good outcome.

Those are the complications that arose during surgery, what about complications that came about after surgery? The diagram below shows the percentage of post-operative complications.

 Again we can see that most women didn’t have any complications after surgery. Of those that did, the most reported type of complications were pelvic haematoma (when blood collects outside the blood vessels), pelvic abscess (as the result of infection), bowel leak (bowel incontinence), and bowel fistula (a hole that forms between one organ to another). All of these complications are manageable as long as patients stay aware of any unusual symptoms after surgery and report them to their doctor as soon as possible.

Of course, not all types of surgery are the same, depending on the type and extent of endometriosis, some will require more complex or extensive removal, and so, have the potential to lead to more complications. The graph below shows the percentage of complications arising depending on whether the surgery involved any bowel surgery at all, bowel shaving (where a thin slice of the bowel surface is removed and any endometriosis excised), disc resection (where a small section of the bowel is cut out), or segmental resection (where a larger portion of the bowel, plus a small part either side of the affected area, is removed and the remaining parts joined back together).  

From these results we can see that, although complications were overall infrequent, disc resection and segmental resection had the higher complication rate. This is perhaps unsurprising given that these techniques do involving cutting into and removing part of the bowel, but it is also a testament to how advanced surgery techniques and skills have become that so few complications do occur.

What are the overall conclusions of this study? You can draw your own from the results I’ve shown here, but I think the main take home message is that complex surgery for the removal of endometriosis, especially when it involves the bowel, requires a multidisciplinary team of experienced surgeons. When it is done right, rectovaginal surgery for the removal of deep endometriosis decreases pain scores and symptoms, and improves quality of life over at least a two year period, so women with endometriosis need to have access to these specialist treatment options to effectively manage their condition.