Endometriosis is one of the most common causes of female infertility, and it affects up to 10% of women of childbearing age, according to the National Institute of Health. As if the extreme chronic pain and heavy bleeding that endometriosis can cause were not enough, it can also seriously derail your plans to get pregnant. Of the more than 5 million American women coping with endometriosis, at least a third must also deal with its impact on their fertility.
If you have been diagnosed with endometriosis and are trying to get pregnant, what are your options? Getting a good understanding of endometriosis and its complications is a smart first step. We’ve put together this guide to getting pregnant with endometriosis so that you can feel empowered to talk to your doctor about possible next steps.
What is endometriosis?
Endometriosis is a gynecological condition where cell tissue very similar to the endometrial tissue (endometrium) which forms the uterine lining is found growing outside of the uterus. There are many different names for these bits of endometrial/endometriotic tissue, including:
Endometrial deposits grow anywhere in the pelvic cavity, including on and around the reproductive organs. They can also sometimes be found outside the pelvic cavity, in the intestines, appendix and rectum. These lesions can bleed during the menstrual cycle, causing inflammation and scarring.
The symptoms of endometriosis can be very unpleasant and disruptive, and include:
- Pelvic pain
- Lower back pain
- Heavy and irregular menstrual periods
- Pain during intercourse
- Pain and discomfort with bowel movements
- Ovarian cysts
An official diagnosis of endometriosis is usually given after a laparoscopy, where the plaques can be seen and identified. The condition is classed into 4 stages as it progresses.
- I – minimal
- II – mild
- III – moderate
- IV – severe
The classifications are based on the location, number, size and depth of endometrial implants, whether there is scar tissue and how extensive any scarring is. The stage of endometriosis is not connected to the amount of pain a patient experiences: a woman with stage I or II may have excruciating pain while one with stage IV experiences very little discomfort. Similarly, the level of your pain does not indicate whether you are more or less likely to experience infertility.
Infertility can happen at any stage, although it does seem to increase with the severity of the condition. When left untreated, endometriosis tends to get worse over time as the endometriomas grow and multiply, but this varies widely between patients.
There is no cure for endometriosis, but there are treatments available to help manage the symptoms.
How can endometriosis affect my ability to conceive?
Endometriosis is a complex disease, the causes of which are still not well understood. What is clear, however, is that it causes a lot of suffering in the women who live with it, and that it can have a severe impact on their ability to get pregnant when they want to. The research says that between 30% to 50% of women diagnosed with endometriosis also struggle with infertility. The chance of a woman with untreated endometriosis conceiving each month is just 2-10%, compared to 15%-20% in the general population.
It is not always easy to discover how endometriosis is causing infertility for a specific patient, but there are several ways that it can complicate natural conception:
- Pain: Severe pelvic pain is one of the most significant symptoms of endometriosis, and unfortunately, most of the treatments that help are incompatible with pregnancy. Birth control pills, IUDs, and other hormonal treatments are often used to slow the growth of endometriotic deposits, which can reduce pain and relieve the heavy periods caused by endometriosis. If you want to get pregnant, you’ll have to stop these treatments, which could lead to your severe symptoms returning. Pain during intercourse is also a common symptom and it can get worse in the time period that the endometriosis is untreated, which can make it more difficult to conceive naturally.
- Adhesions, scarring, and blockages: When deposits from endometriosis form around reproductive organs, they can affect their functioning. One of the more common fertility issues dealt with by women with endometriosis is an obstruction or blockage in one or both fallopian tubes, which can interfere with normal ovulation and prevent conception.
- Ovarian cysts and complications: Endometriosis can cause “chocolate cysts” (named after their distinctive dark brown coloring) to grow on the ovaries. These cysts can disrupt ovulation, impede blood flow to the vary, block the regular transportation of eggs from ovary to fallopian tube, affect the quality of the eggs, or even cause structural damage to the ovaries and reduce ovarian reserve. Any of these issues can cause infertility.
- Endometriotic deposits causing toxicity in the pelvic (intraperitoneal) environment: Even if there are no blockages, adhesions, or cysts affecting ovulation, relatively mild cases of endometriosis can still lead to unexplained infertility. Researcher are studying why this might be, and early evidence suggests that chemical changes in the body due to the presence of endometriosis may be to blame. It may be that the endometrial cells or an immune response to those cells are producing biochemical substances such as prostaglandins which could be making the intraperitoneal environment hostile to fertilization and embryo implantation.
- Removal of reproductive organs: In very severe cases of endometriosis, or if the endometriosis causes irreparable scarring and damage to the reproductive organs, a patient may have surgery to remove their ovaries and/or uterus. This has obvious consequences for fertility. Depending on the timing of this surgery and what was removed, there may still be steps which can be taken to make having a baby possible, which could include freezing eggs before the procedure (fertility preservation), using an egg donor, and/or using a surrogate.
What treatments can help me get pregnant with endometriosis?
If you’re planning to get pregnant or if you’ve been trying for some time without success, don’t wait before seeking help. For most patients with endometriosis, time is an important factor. The condition is progressive, and the sooner you can get pregnant, the better.
Any trip to the doctor to talk about your fertility should begin with a full fertility workup. There are a wide range of diagnostic fertility tests available which can shed light on what may be happening inside your body that’s preventing you from getting pregnant. Armed with this information, your fertility expert can work with you to draw up a treatment plan that makes sense for your unique case.
The good news is that there is help out there for women who want to get pregnant in spite of endometriosis. Medication, surgery, and assisted reproductive therapies (ART) have made a difference for thousands of patients dealing with this debilitating disease and allowed them to achieve their dream of a healthy pregnancy and birth.
- GnRH agonists before fertility treatment: GnRH agonist medications are a common treatment for endometriosis which have been in use for a long time. GnRH stands for gonadotropin releasing hormone, which is a naturally occurring hormone that works to control the menstrual cycle. GnRH agonists are modified versions of the same hormone. They suppress the body’s production of estrogen, which effectively “starves” the endometrial deposits, stops them from bleeding, and causes them to shrink. You cannot get pregnant while taking GnRH agonists, but studies have shown that a course of GnRH treatment (usually 3 to 6 months) before undergoing fertility treatment can significantly improve some patients’ chances of success.
- Surgery: Surgery to remove deposits, lesions, and plaques caused by endometriosis may be an option. It is often possible to clear a blocked fallopian tube, and some studies report that 30% to 80% of women who undergo surgery for endometriosis eventually get pregnant. But at this point the evidence is unclear. Success rates appear to be directly tied to the severity of the disease and the age of the patient. In some cases, surgical intervention could make the situation worse by causing scar tissue or diminishing ovarian reserve. Young patients with advanced endometriosis and a lot of large endometriosis may benefit the most.
- Intrauterine insemination (IUI) with controlled ovarian stimulation (COH): IUI combined with hormonal fertility medication can help in some cases of mild/moderate endometriosis, when the patient does not have any blockages and is able to ovulate. Research has shown that the cumulative live birth rate was five times higher after IUI-COH, though still lower than for patients without endometriosis by about 21%.
- IVF: In Vitro Fertilization (IVF) is often the best option for women with endometriosis, especially if they are dealing with obstructions to ovulation. Undergoing IVF is an extremely effective treatment for endometriosis patients and the prognosis is generally very encouraging. In our practice, the IVF patients we treat who have an endometriosis diagnosis usually do just as well as those without it.
How could endometriosis affect my pregnancy?
Most patients go on to have healthy pregnancies, but you should be aware that studies have shown that endometriosis is a risk factor for some complications, including:
- High blood pressure (preeclampsia)
- Bleeding after 24 weeks
- Low-lying placenta (placenta previa)
- Cesarean section
- Premature birth
While this list may look intimidating, we should note that research on these topics is still in the early stages. While there are some associations between endometriosis and complications, the links are not fully understood. The best thing you can do during your pregnancy is to ensure that you get regular prenatal care. Don’t worry too much. The bottom line is: getting pregnant and carrying a healthy baby to term is a common outcome for women with endometriosis.
Endometriosis cannot be treated during pregnancy, but many women actually find that getting pregnant gives them some relief from their symptoms for the duration of the pregnancy, and often for a substantial period afterwards.
Living with endometriosis is hard. So is infertility. Along with the physical symptoms, the emotional fallout of having to cope with everything endometriosis brings can be intense. It’s so important to have a strong support system and a team that understands your condition and what you’re dealing with. If you do decide to undergo IVF, your fertility expert should know that particularly careful medication management is necessary during the ovarian stimulation phase of treatment, as it may cause a temporary increase in endometriosis symptoms. Above all, you should know that you are not alone as you walk this road. So many women have overcome this condition to bring home their baby. With the right help, anything is possible.