In 2018, 31 year-old Lena Dunham (writer and creator of the show Girls) revealed that she had a hysterectomy to end her painful struggle with endometriosis. Dunham’s decision—which also makes her infertile—was highly controversial. She explained that while saddened to give up her fertility, she was confident in her decision because the unbearable chronic pain of her disease severely limited her life.
If you struggle with terrible cramps, pelvic pain (especially during your period), and pain during sex, you may also be struggling with endometriosis symptoms—though the disease can sometimes present without any symptoms or pain at all. It is also linked to infertility.
This chronic pain condition is highly prevalent, affecting approximately 1 in 10 women of reproductive age. However, it is still under-recognized and misunderstood. This post will answer major questions about what endometriosis symptoms are, what this condition means for your fertility, and what your treatment options are (and yes, you can keep your uterus).
What is endometriosis?
During normal menstruation, the uterine lining is expelled from the body. However, in endometriosis, some uterine tissue travels and grows in other areas, like the fallopian tubes, ovaries, pelvic lining, and bowels. Even though it is no longer in the uterus, this rogue uterine tissue still grows and sheds during menstrual cycles. This process can be excruciatingly painful and even lead to scarring or adhesions (when organs stick together).
Researchers still don’t fully understand why uterine tissue travels or forms outside of the uterus. But, they have identified certain risk factors that make this condition more likely1:
- Starting menstruation at a young age (<12 years old)
- Longer menstruation (longer than 7 days)
- Family history and genes
- Low BMI in early adulthood2
- Increased alcohol intake3
How do I know if I have endometriosis?
Despite how common endometriosis is, doctors do not routinely screen for it. So, if you’re concerned about possibly having this condition or are struggling with unexplained fertility, it’s something you might consider asking your doctor to test for.
To test for endometriosis, your doctor can do a pelvic exam to determine if there are growths outside of the uterus. They may also use an ultrasound or MRI scan to locate the growths. While these exams can provide a good indication of whether the disease is likely, the only way to know definitively is with a laproscopy—a minimally invasive surgery where the doctor can directly examine the pelvic area.
I have endometriosis. Can I still get pregnant?
The answer is YES, but conceiving can be more difficult.
There is a strong correlation between endometriosis and infertility, with more severe cases linked to lower fertility. Location of endometrial growths is also a factor in how a particular case will impact fertility. One study found that pregnancy rates were lower in women with peritoneal endometriosis (uterine tissue growing in the abdomen) than with ovarian endometriosis4. However, even with ovarian endometrial growths, if scar tissue or growths directly block the ovaries, it can sometimes prevent ovulation from occurring.
Another fertility challenge with endometriosis is that the growths can secrete pro-inflammatory cytokines (molecules the body makes that increase inflammation). Depending on where the inflammation is, this can disrupt processes like transporting the egg down the fallopian tube, implantation, sperm survival, and sperm migration 5.
So, how will endometriosis impact your fertility? It depends. Because this disease can impact reproductive organs at different levels, its effects on fertility vary from woman to woman. This variability makes it difficult for researchers to definitively state the relationship between endometriosis and infertility.
Bottom line? It IS possible for women with endometriosis to become pregnant.
Will treating endometriosis boost my chances of getting pregnant?
It depends on how severe your condition is.
Hormone treatments, like the oral contraceptive pill or gonadotropin hormone agonists, while useful for pain management, aren’t helpful once trying to conceive6.
Surgical options can help, depending on how severe the endometrial growths are. A review by the European Society of Human Reproduction and Embryology determined that laproscopic surgery to remove growths and adhesions improved rates of pregnancy in women with mild endometriosis. Unfortunately, for women with severe endometriosis or who plan on using artificial technology like in vitro fertilization, we don’t know yet whether surgery helps because there are no controlled clinical studies testing this7.
For endometrial growths surrounding the ovaries, surgery to remove the growths increased rate of pregnancy better than ablation procedures, which involve surgically draining and destroying the growth8. One possible concern to talk to your doctor about is whether the surgery may hurt healthy ovarian tissue and egg reserve and what your options are for preserving your eggs.
Hysterectomy is considered a fairly radical treatment option, since removing the uterus means that it is no longer possible to become pregnant. It is only performed with extreme cases of endometriosis, when other treatment options have been exhausted.
- https://www.ncbi.nlm.nih.gov/pubmed/24366116 ↩
- https://www.ncbi.nlm.nih.gov/pubmed/23674552 ↩
- https://www.ncbi.nlm.nih.gov/pubmed/23707678 ↩
- https://www.ncbi.nlm.nih.gov/pubmed/29390906 ↩
- https://www.ncbi.nlm.nih.gov/pubmed/25593948 ↩
- https://www.ncbi.nlm.nih.gov/pubmed/17636607 ↩
- https://www.ncbi.nlm.nih.gov/pubmed/24435778 ↩
- https://www.ncbi.nlm.nih.gov/pubmed/16246860 ↩