Dysmenorrhoea is defined as painful menses and is reported by up to 50-90% of women. It is described as primary dysmenorrhoea if no underlying cause of the pain is found and the reproductive organs and pelvis are seemingly normal. These appear to be more common in younger women and tend resolve with increasing age. Other risk factors include BMI <20kg/m2, smoking, starting your periods before age 12, longer cycles and longer duration of bleeding, irregular or heavy flow, and a history of sexual assault.
Secondary dysmenorrhoea is menses pain where an underlying condition causing the pain is found by your doctor. For example, this may be endometriosis, adenomyosis, fibroids or pelvic infection. However, the most common cause of secondary dysmenorrhoea is endometriosis.
Endometriosis is a common condition affecting around 8% of the female population. It is caused by the lining of the womb (endometrium) appearing in other places in the body. Most commonly endometriosis occurs inside the pelvic area and attaches to the ovaries, the ligaments behind the womb, the tissue layer lining the pelvis, the bladder and ureters or the intestine. When it causes cysts on the ovaries these are called endometriomas or “chocolate cysts” because they are filled with a chocolate-like liquid. When the cysts are bilateral and meet together in the midline they are described as kissing ovaries. Endometriosis can occur in minimal amounts (stage 1) through to severe amounts (stage 4).
The cause of endometriosis is still unknown. Adenomyosis is endometriosis in the muscle layer of the womb itself. Symptoms of endometriosis Endometriosis may cause pelvic pain or infertility although many women with endometriosis have neither problem. Having more endometriosis doesn’t mean you will have more pain, as women with only a minimal amount can have more pain than women with severe disease and some women with severe disease amazingly have no pain. Pelvic pain in endometriosis is mostly associated with periods and occurs on a monthly basis. However other significant symptoms may be: • pain felt deep inside the vagina during or after sexual intercourse • pain felt during opening your bowels and passing a motion. • pain felt on passing urine • chronic pain felt at any time of the cycle
These also tend to be worse during periods. Although it is normal to have some discomfort during menses, it is not normal to have pain that is not relieved by simple pain-killer forces you to take time off work or miss social events. These pains may suggests that you have endometriosis and should seek medical help.
In more rare casesyou may have bleeding from the back passage or bleeding when you pass urine during periods, suggesting that endometriosis is affecting the full thickness of the rectum or bladder. Cyclical pain during your periods in an old operation scar (e.g. caesarean section scar) may suggest that there is endometriosis in it. Coughing up blood or having chest pain, shoulder pain or shortness of breath during your periods may be suggestive of endometriosis affecting the diaphragm or lungs.
Endometriosis may affect the deeper nerves in the pelvis and symptoms of sciatica (tingling pain down the back of the leg usually on one side) and referred joint pain may be suggestive of sciatic nerve endometriosis. It can also affect the pudendal nerve that supplies the bladder, rectum and sexual organs causing a multitude of different symptoms (link) that may not be easily attributable to endometriosis to a general gynaecologist.
When we look at women who are struggling to conceive, we find that a greater number of them have endometriosis than we would expect to find in the general population showing a link between endometriosis and infertility but this is poorly understood.
The average age of onset of pain symptoms in endometriosis is 21 years old but the average age of diagnosis is 28. This may be because many women ignore the pain symptoms because they think it must be normal and do not wish to appear as if they are complaining or because doctors dismiss their complaints too easily. Your gynaecologist may suspect you have endometriosis after asking about your symptoms. Normally they will arrange for you to have an ultrasound scan which can diagnose endometriotic cysts in ovaries. An expert endometriosis scanner, can detect deep infiltrating endometriosis and other rarer presentations of endometriosis and adenomyosis, however this is not a skill available to most operators performing general gynaecological scans.
MRI may also be used to diagnose severe endometriosis if it is suspected. Transvaginal ultrasound in expert hands may be better in some ways as it as it gives a dynamic picture as organs are pushed against each other to find out where adhesions are, and not so good in others as it is unable to get a view as high up the bowel as the MRI can.
Some general gynaecologists test an antigen in the blood called CA125. This test is used as a marker for ovarian cancer patients and is also often raised in deep infiltrating endometriosis to the same extent. Most experts do not recommend its use because it is an emotive test that unnecessarily and wrongly scares people about a risk of cancer that is not there. In expert hands this risk is more readily assessed on the ultrasound. Minimal to mild endometriosis cannot be detected by any test or scan. The only way to diagnose it is to undergo a diagnostic laparoscopy (keyhole surgery) under general anaesthetic and to see it directly. A gynaecologist who specialises in endometriosis would then aim to remove all visible endometriosis at the same time where possible. If your doctor suspects or finds you to have more severe disease affecting the bowels, bladder or ureters, you would likely need to be woken up to undergo further specialist tests and counselling to assess the problem before it is removed if appropriate.
It is crucial that your endometriosis treatment is tailored to your own specific circumstances and that you see a specialist in endometriosis who can advise you on this. Your treatment will depend upon your age, desire for a diagnosis, fertility requirements and pain symptoms. Do not just accept the first treatment offered without understanding why it is being offered in your situation. A consultation for complex endometriosis will take a good 60 minutes.
There is no absolute cure for endometriosis and it tends to be an issue that remains with you for most of your fertile years then becoming quiescent at menopause.
Both medical and surgical treatments give a measure of relief from pain depending on the type of endometriosis you have. The amount of pain relief can vary greatly depending on many factors. Pain can recur after stopping medical treatments or at a later date after surgery. If you are not keen to have a diagnostic laparoscopy (keyhole surgery) to confirm that you have endometriosis, then it may be reasonable to try medical treatment first and then consider a diagnostic laparoscopy later if the medical treatments do not work or you suffer from significant side effects.
All of the hormonal treatments have been shown to be equally effective as each other at relieving pain but none of them improve fertility. The choice of drug treatment is decided by your age, requirement for birth control and the potential side effects of the drugs.
• Simple painkillers may be used. However most women have already tried these before they see a gynaecologist.
• Hormonal drugs can be used to mimic the hormone levels found in pregnancy as we know that endometriosis pain tends to improve during pregnancy. Your doctor may prescribe oral oestrogen and progesterone combined, progesterone only medication, or a progesterone impregnated coil that fits inside the womb.
• You can also take hormone drugs to temporarily mimic menopause as we know that endometriosis tends to resolve once the menses have stopped. This is generally done by injections that temporarily switch off the ovaries during the treatment period. However, these drugs cannot be used long term in most cases due to the risk of bone mineral loss.
Some women wish to proceed directly to a diagnostic laparoscopy because they wish to be certain if they do have endometriosis. Knowing the cause of the problem helps them psychologically to deal with it. Surgical treatment requires the help of a gynaecologist who specialises in endometriosis and minimally invasive surgery (keyhole surgery). For minimal to moderate disease (Stage 1-3), the surgeon should be comfortable to diagnose the problem during laparoscopy and surgically remove it at the same time, to get the best chance of pain relief. Many general gynaecologists are not fully trained in these techniques.
The argument between excision versus ablation as the best treatment method for endometriosis has been hotly debated. It is fair to say however, that many expert surgeons in endometriosis favour excision as it allows a full assessment of the depth of the disease and subsequent removal. The most recent evidence in a systematic review suggests that excision is more effective at relieving endometriosis pain than ablation. The problem remains that there are not a large number of excision surgeons capable of safely removing the disease even in the earlier stages. If your gynaecologist discovers severe disease then, to treat it at the same time, they should have discussed with you the pros and cons of surgical removal. Severe disease may have already been confirmed by MRI or transvaginal ultrasound scan before your surgery and therefore been fully discussed. Otherwise you would usually be woken up after the diagnosis has been made and then fully counselled before proceeding to surgery for severe disease if appropriate.
In severe cases, endometriosis surgery is a high- risk complex operation that should only be attempted by fully trained experts in specialist centres. There are three main techniques to do this: either by shaving it from the bowel surface, cutting out a disc of bowel for a smallish lesion, or removing a segment of bowel in more complicated cases. The greater the intervention on the bowel, the greater risk of major or long-term complications.
If you are found to have endometriosis- associated infertility then the choice is whether to have surgery or assisted fertility treatments (IVF or IUI) or both. With minimal to moderate endometriosis, there is evidence that surgically removing the endometriosis deposits and endometriotic ovarian cysts improves your chances of conceiving spontaneously reducing the need for assisted conception techniques.
There is some evidence that surgically removing severe endometriosis before infertility treatment, improves your chances of success. However, there is a small risk of damaging your fertility with surgery in some cases, and so assisted conception techniques may be recommended in the first instance so as not to risk affecting your fertility further from surgical complications.
Surgery may also be needed first if:
• The pain is so severe that it is the major problem, rather than the fertility issue.
• You have large endometriotic cysts on the ovaries that are interfering with the infertility specialist’s ability to collect eggs for IVF.
All surgery has a risk of complications from general ones to more specific ones. General complications can be related to the anaesthetic or directly to the surgery. Surgical complications tend to include the general headings of infection, bleeding, adhesion formation and thrombosis (blood clots forming where they are not meant to like the legs or lungs). Major complications specific for complex endometriosis tend to be:
• Leaks or fistulas from the bowel or ureters.
Surgery to excise endometriosis from the surface of the ureters or bowel can leave weak areas that can potentially break down and leak or connect to another organ. These are some of the worst complications associated with complex endometriosis surgery and can result in the patient becoming very ill. Generally, the more interventional the bowel surgery is, the higher the risk. It may result in emergency surgery and the need for a temporary stoma to stop the flow through the intestines thereby allowing them to heal.
• Significant blood loss.
Women who have had multiple previous and particularly suboptimal surgery as well as those who have had previous pelvic infection are at most risk of significant blood loss during surgery.
• Nerve damage.
The pelvis has a complex network of nerves that is involved in particular in bowel, urinary and sexual function. Expert surgeons should be able to isolate these pathways and reduce the risk of damage to them where possible. These surgeons are rare and you should ask if your surgeon is capable of nerve-sparing surgery.
• Ovarian compromise.
Surgery involving the removal of endometriotic cysts will in all cases result in some damage that reduces the egg supply in the ovary. However, in most cases removal of the cyst will improve fertility and reduce the risk of recurrence and pain compared with only draining or ablating the cyst. In a small percentage of women fertility can be made worse especially if they are older, have bilateral cysts or have had previous ovarian surgery.
A test of ovarian reserve before surgery should have been done if fertility is an issue to help decide if surgery is too risky and egg collection should be considered first. This is done either by an Antral Follicle Count by ultrasound or Follicle Stimulating Hormone blood test at the beginning of the cycle or an Anti Mullerian Hormone blood test at any time.
Many experts believe that the shaving technique is the least risky in terms of both short term and long term major complications and so veer towards this approach if possible, based on the premise that endometriosis is a benign disease and not a life-threatening cancer, patients are generally young and therefore long-term complications are best avoided. Shaving is not always feasible as in cases of significant bowel or ureter narrowing. There are however some specialists who believe in the most interventional approach and mostly do segmental bowel resections as they believe this will result in the least risk of disease recurrence despite the higher complication risk. Women should be fully counselled about the options and rationale for what the surgeon offers.
Not everyone requires surgical removal of severe disease as it can compromise your fertility as described above. Robotic keyhole surgery now potentially offers the most accurate and precise surgery for severe cases of endometriosis with the lowest risks of complications (around 3% for a shaving technique). Over 80% of patients undergoing surgery say that their pain significantly improves. Your gynaecologist should also be able to offer you access to other specialists as required, for example:
• A neuropathic pain expert
• A specialist in bowel surgery
• A urology expert
• Psychological and psycho-sexual support
• Dysmenorrhoea and endometriosis can be very physically and mentally debilitating thereby affecting every aspect of a woman’s life from work, to social life, and to relationships.
• Seeing a gynaecologist who specialises in endometriosis only gives a good chance of keeping the pain under control and achieving your fertility aspirations.
• This is very difficult to achieve in a short consultation and we believe that it takes around an hour to fully assess someone and look at their whole condition, life aims and what they wish to achieve.
• A high-quality scan (MRI or transvaginal ultrasound by an expert who can identify Deep Infiltrating Endometriosis) is needed before laparoscopy to identify severe cases.
• An assessment of ovarian reserve should have been made if fertility is an issue. • If you decide with them to have surgery then they should practise EXCISION surgery.
• Shaving technique in complex endometriosis may offer the best balance between risk and benefit.
• Robotic surgery has reduced the risk of complications in complex cases.
I came to medicine late having previously been an Army Officer in The Brigade of Gurkhas. I completed Officer training at The Royal Military Academy Sandhurst and then commanded Gurkha infantry soldiers for five years in Hong Kong, Singapore, Malaysia, South Korea, Brunei, the Falkland Islands and the UK.
Having completed my Commission in the Army I went to medical school at Imperial College, London. I chose gynaecology as it was so varied with plenty of action on the labour ward to suit my background! I completed most of my training in London though I also spent a year at the Karolinska Hospital in Stockholm, Sweden, where I developed an interest in laparoscopic surgery.
On my return to the U.K. I began a four-year training and Doctorate research fellowship at the Minimal Access Therapy Training Unit in Guildford.
My research was on the surgical treatment of endometriosis and clinically I trained in surgery for complex benign conditions including the excision of severe endometriosis. Professor Jeremy Wright, who trained with David Redwine, and was the first gynaecologist to bring excision surgery for complex endometriosis to the UK, was one of my mentors.
I was co-opted onto the Board of the British Society of Gynaecological Endoscopy and co-organised the National course in laparoscopic surgery for UK trainees. During this time, I was also a faculty member for Ethicon Endo-Surgery for teaching laparoscopic surgery both in the U.K. and at the European Surgical Institute.
In 2008, I went to train in robotic surgery with endometriosis expert Dr John Dulemba in Denton, Texas. I then returned to Guildford in 2009 as we received delivery of our first robot. We then began the first robotic gynaecological surgery programme in the U.K. and began offering robotic surgery for complex endometriosis in 2010. We became one of five recognised robotic training centres in Europe for gynaecological surgery and the only one in the UK. During this time I started the British & Irish Association of Robotic Gynaecological Surgeons with Professors Shepherd and Wright and became Vice President of the Society of European Robotic Surgery.
In 2013 I l went to Singapore to establish a robotic surgery and complex endometriosis surgery programme at Singapore General Hospital. We had the highest case volume for gynaecology in South East Asia.
I served on several Singaporean Ministry of Health expert panels and Chaired the hospital robotic surgery committee. I was a founding member of the Asian Society of Gynaecological Robotic Surgery in 2015. I was President of the British & Irish Association of Robotic Gynaecological Surgeons from 2015-2017
I returned to the U.K. in 2016 and began The Endometriosis Clinic which is based at The Princess Grace Hospital in London where I currently practise.
I have presented and proctored in many countries on endometriosis and robotic surgery and have one of the largest robotic case series worldwide for the excision of complex disease.
I am a passionate believer in excision of endometriosis as giving the most long lasting and positive benefit for women with this debilitating disease.
I firmly believe that robotic surgery has enhanced my ability to do this by an improved view, dexterity and ergonomics and has led to a significant reduction in the major complication rates that can occur in complex surgery.
For several years now we have been able to more easily offer a nerve sparing approach to complex cases to help reduce the often unmentioned autonomic urinary, bowel and sexual complications that can occur if pelvic autonomic nerves are not conserved during excision.
As my experience grows I find it a constantly bewildering disease with ever more surprising presentations leading me to look much more closely at patients who may have endometriosis affecting unusual areas including the diaphragm, chest and deep pelvic nerves like the pudendal and sciatic.
I find that many patients have been cast off by general gynaecologists or even specialist endometriosis centres and we seek to find strategies to look more closely at what has been missed by working in a multidisciplinary environment.
My mantra is “never give up, there’s always something we can do!”
Mr. Barton-Smith runs a weekly endometriosis clinic on a Wednesday at:
The Endometriosis Clinic Main Outpatients
The Princess Grace Hospital
42-52 Nottingham Place
London W1U 5NY
Appointments: 020 3504 8494