Endometriosis is estimated to affect between 10 percent and 20 percent of AFAB (Assigned Female at Birth) individuals in America.
Symptomatic endometriosis has a significant impact on quality of life.
It also causes a substantial burden on the economy.
The impact that endometriosis has on the daily lives of millions of individuals can no longer be overlooked.
A large proportion of the impact endo has on the economy is lost productivity since women cannot continue in their usual activities of daily living.
It is estimated that a woman with symptomatic endometriosis loses 10.4 hours every week in lost productivity.
This puts endometriosis on a similar level to diabetes in terms of the impact that it has on women’s health.
Symptomatic endometriosis may present with period pain, pain between periods that may be cyclic or have no particular pattern, pain during or after sex, pain immediately before or during bowel movements or variations of these symptoms.
Worsening of these symptoms with the onset of the period is a very common feature of endometriosis.
For many, there is still a significant delay in diagnosis. In many countries, this remains around ten years.
For women who have persistent pain that is not responsive to simple medical treatments, consideration of endometriosis should be made and appropriate referral and management are undertaken.
In this blog post, we will discuss how endometriosis affects fertility and how your doctor can support you.
How does endometriosis affect fertility?
Endometriosis can affect fertility in a number of ways.
Most obviously, as the disease progresses and pelvic damage increases to organs such as the fallopian tubes through distortion or adhesions, the passage of sperm and eggs through the pelvis will be increasingly impaired.
Similarly, there appears to be a change in the pelvic environment, most likely resulting from endometriosis-related inflammation.
These inflammatory substances and cells impair the function of both eggs and sperm, fertilization, embryo development and implantation.
There is also increasing evidence that the quality and quantity of eggs in women with endometriosis is affected, though it is not certain whether this is a direct effect of the disease.
Egg quantity (the ovarian reserve) can be measured through a pelvic ultrasound or a blood test, called AMH.
While it makes sense that endometriosis in the ovary can have this effect, the current evidence points to a reduction in egg numbers and quality even if the disease is outside of the ovary.
Similarly, the current evidence suggests that the uterus in those with endometriosis seems to function differently.
There appears to be a reduction in implantation and potentially also an increased chance of miscarriage in women with endometriosis.
Some of the treatments for endometriosis, whether they be medical or surgical, can also affect fertility.
Almost all medical treatments for endometriosis will interfere with ovulation and therefore may impact the chances of pregnancy while undergoing treatment.
While none of these treatments have long-term effects on fertility, any delay in conception, particularly over the age of 35, will naturally reduce the chances of conception.
Finally, but most importantly, the pain associated with endometriosis can affect all aspects of relationships, whether directly related to sex or not.
Individuals with endometriosis are more likely to report an altered body image and describe reduced desire, arousal, and pain.
This pain may not only occur during sex but will often typically persist for some time afterward.
So, between the physical effects of endometriosis, reduced egg number and function, painful sex, taking medication and hormonal therapies, undergoing surgery and dealing with a variety of emotional issues, it is little wonder that fertility is affected…
So what can be done to improve the chances of starting a family while living with endometriosis?
Diagnosis is usually the first port of call for many illnesses, BUT the average endometriosis diagnosis takes around 10 years! Below we unpack a few of the steps and processes you may want to consider on your journey with endometriosis.
Starting at the beginning
The most valuable investigation is a high-quality specialized gynecological ultrasound.
Specialized ultrasound services have become increasingly reliable at diagnosing deeply invasive endometriosis (DIE), especially disease involving the bowel.
They also provide information about whether organs appear to be affected by adhesions and most importantly, will diagnose ovarian endometriosis with great accuracy.
An ultrasound may report an antral follicle count (this is the number of eggs starting to develop in any one cycle), which is one measure of ovarian reserve (how many eggs remain in the ovary).
Another investigation is a blood test called an Anti-Müllerian Hormone (AMH) that is currently considered to be the best measure of ovarian reserve.
It is important to understand that this blood does not provide information about natural fertility and it is important to discuss the results of this test with a specialist.
Other blood tests such as the CA-125 test may also be helpful since in the absence of any disease on the ovary in a specialized ultrasound scan, an elevated CA-125 is highly suggestive of endometriosis outside of the ovary.
Other blood tests that may be performed for fertility include a day 1-3 estrogen and follicle-stimulating hormone (FSH) test.
For the FSH to be meaningful, the E2 should be less than 200 and an FSH less than 12 is desirable.
It is important to remember that although some of these tests indicate and predict ovarian reserve, none of them are indications of success for unassisted pregnancy, the results of these tests may however influence the decision to consider seeking out a fertility specialist and considering ART (Assisted Reproductive Technologies) such as IVF.
When in your journey you may want to consider seeking out specialists.
The decision to request a referral can be made on the basis of symptoms alone, but if there are any abnormalities in the above investigations then a specialist referral is recommended.
Individuals with asymptomatic infertility should be referred to an infertility specialist when basic investigations have been performed and pregnancy has not occurred in a 12-month time period. This time should be reduced when the patient is over 35 years of age.
The specialists your general practitioner may refer you to
It is recommended that individuals with endometriosis be referred to an infertility specialist who has access to both ART (Assisted Reproductive Technologies) and advanced excision (cutting out) surgery for endometriosis.
The choice between surgery and ART (assisted reproductive technologies) such as IVF (In Vitro Fertilization) can be complex, complicated, and often overwhelming.
For those trying to start or grow their family, it may feel like the dilemma of putting out the oil fire on the stove or the burning curtains first.
It is not a decision that should be made lightly or without consulting your specialists, a health and wellness coach may prove to be helpful in helping set goals and expectations for this stage in a journey.
For those experiencing symptoms such as pelvic pain and infertility, excision surgery may improve quality of life, and may also improve chances of unassisted pregnancy.
How does endometriosis cause infertility?
The short answer is that it is unknown how endometriosis causes infertility, although the current theory is that endometrial implants produce a range of chemicals that adversely affect the endometrium and reduce the chance of embryo implantation (sticking to the uterine lining to allow pregnancy to continue).
Endometrial implants refer to the endometrial tissue growing outside of your uterus is known as an endometrial implant.
The hormonal changes of your menstrual cycle affect the misplaced endometrial tissue.
These changes cause the area to become inflamed and painful.
This means the tissue will grow, thicken, and break down.
Removal of these endometrial implants therefore may be associated with improved embryo implantation.
What are the negative effects of surgery for endometriosis?
Surgical removal of endometriosis from the ovary may have an adverse impact on future ovarian reserve.
Studies show that the removal of an endometrioma from one ovary only will cause, on average, around a 50% drop in AMH levels.
Removal of endometriomas from both ovaries will cause, on average, around a 70% drop in this hormone level, suggesting a decrease in the total number of available eggs.
Around 50% of those that have opted to have surgery to remove ovarian endometriosis will become pregnant without the use of Assisted Reproductive Technologies (ART) in 12 months following surgery (presuming there are Fallopian tubes and good-quality sperm).
If, however, after 12 months this has not occurred it may be due to a complication from surgery and it may be beneficial to consider getting pregnant via ART (Assisted Reproductive Technologies)
This is a dilemma and makes decisions about primary surgery very difficult.
What can be done to protect ovarian reserve if surgery is performed on the ovary for endometriosis?
Again, the short answer is nothing. Even in the best of hands, surgery may still result in severe compromise to ovarian reserve.
There is the option of egg freezing before surgery to try and have an ‘insurance policy’ should there be an issue with surgery, however, these options are not without risk and also come at a cost.
Egg freezing may also be an option, with excellent outcomes being reported around the world in young women.
For those who are over the age of 35, results are not as good and for women over 40, egg freezing is not likely to result in a viable pregnancy.
Embryo freezing has been an established technology for a long time and has much better outcomes since it is further down the pathway of reproduction, but does require either a current partner or sperm donor, so is not always suitable for women who do not have a current partner.
Should you have ovarian endometriosis, then consultation with a specialist who has both expertise in endometriosis and access to ART is the best option and a full discussion of the options available to you given your specific circumstances is most appropriate.
There are only a limited number of treatments available, so how you proceed will depend on your specific set of circumstances.
Regardless of where you are on your journey, whether you opt for surgery, ART (Assisted Reproductive Technology), or any treatment, it is helpful to know that there is someone in your corner, to cheer you on, support you, listen, and help navigate ALL your options…