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 and is very variable from woman to woman and depends on many factors. Pain can recur after stopping medical treatments or after surgery.
If you are not keen to have a diagnostic laparoscopy (keyhole surgery) to confirm that you have superficial endometriosis, then it may be reasonable to try medical treatments for endometriosis to see if these alleviate your symptoms first and then consider a diagnostic laparoscopy later if the medical treatments do not work or you suffer from significant side effects. Many women coming to the clinic have already tried many forms of medical treatment already however.
Medical treatments for pain
All of the hormonal treatments have been shown to be equally effective as each other at relieving pain but none of them improve fertility. There is no evidence that any hormonal treatment is better than any other one. The choice of drug treatment is decided by your age, requirement for birth control and the potential side effects of the drugs.
Firstly, simple painkillers may be used. However most women have already tried these before they see a gynaecologist.
Secondly, 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, or progesterone only medication orally or by injection or implant, or a progesterone impregnated coil that fits inside the womb.
Thirdly, hormonal drugs can be used to temporarily mimic menopause, as we know that endometriosis tends to resolve once the menopause has set in. This is generally done by injections or nasal sprays of GnRH analogues that temporarily switch off the ovaries during the treatment period. Your menses will return after the treatment is stopped without risk to your fertility. However, these drugs cannot be used long term in most cases due to the risk of bone mineral loss.
Occasionally other drugs like aromatase inhibitors may be used that block the production of Oestrogen hormone.
Surgical treatments for pain
Surgery or not and should you look for an “Excision Surgeon”?
Some women wish to proceed directly to a diagnostic laparoscopy because they wish to be certain that they do have endometriosis. Knowing the cause of the problem helps them psychologically to deal with it.
Surgical treatment requires 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 in its various appearances during laparoscopy and treat it by excision at the same time to get the best chance of pain relief. Many general gynaecologists are not fully trained in these techniques, especially excision. If the gynaecologist discovers severe disease that is not already diagnosed on scan, then to treat it at the same time, they should have discussed with you in advance the risks and benefits in your particular case.
The argument between excision versus ablation as the best treatment method for endometriosis has been hotly debated. It is fair to say however, that most 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 our systematic review (level 1a evidence - the highest form) 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 by either means, even in the earlier stages.
In severe cases, endometriosis surgery is a high-risk complex operation that should only be attempted by a 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 smallish lesions, or remove a segment of bowel in more complicated cases. The greater the intervention on the bowel, the greater risk of major and 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 at laparoscopic surgery improves your chances of conceiving spontaneously, thereby 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 also 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 when:
The pain is so severe that it is the major problem, rather than the fertility
You have large endometriotic cysts on the ovaries that are interfering with the infertility specialist’s ability to collect eggs for IVF
Surgical treatment for fertility
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 healing or re-implanting the ureters into the bladder.
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 sometimes requiring blood transfusion.
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.
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 excision 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 possible, where fertility is an issue, to help decide if surgery is too risky and egg collection should be considered first instead. This is done either by an Antral Follicle Count by ultrasound, or Follicle Stimulating Hormone blood test at the beginning of the cycle (day 2-4 of your period) or an Anti Mullerian Hormone blood test at any time. These cannot be reliably done if the patient is on hormonal therapy at the time of the assessment.
Many experts believe that the shaving technique is the least risky in terms of both short term and long term major complications and so we 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 despite a possibly a higher risk of recurrence. Shaving is not always feasible as is the case in 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 their own surgeon offers.
Not everyone requires surgical excision of severe disease as it can compromise your fertility as described above. Robotic keyhole surgery now offers 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) disease.
Over 80% of patients undergoing surgery say that their pain significantly improves at 12 months post surgery for both superficial and deep infiltrating endometriosis.
Your gynaecologist should also be able to offer you access to other specialists as required, for example: like
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 only endometriosis probably gives the best 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 and avoid diagnostic laparoscopy.
An assessment of ovarian reserve should have been made where possible if fertility is an issue.
If you decide to have surgery then the surgeon 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.