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A hysterectomy is not a definitive treatment for endometriosis, yet it’s commonly recommended as one.
This myth comes from a poor understanding of what endometriosis is, in part from the outdated endometriosis theory of origin of retrograde menstruation and the incorrect idea that endometriosis is from menstrual blood flowing backwards out the tubes into the abdominal cavity (see What Causes Endometriosis?). Endometriosis is not a disease of the uterus; in fact by definition, endometriosis is endometrial-like tissue found in extrauterine sites (ie, outside of the uterus). But due to this misconception that endometriosis is from retrograde menstruation from the uterus, unnecessary hysterectomies are performed on countless patients. It’s important to know that if a surgeon performs a hysterectomy but doesn’t excise the endometriosis, that would actually be considered an incomplete surgery. To treat endometriosis, the surgeon has to excise the endometriosis lesions themselves.
In some instances, a hysterectomy may help people if their pain is actually because of problems originating in their uterus, such as fibroids or adenomyosis. (Adenomyosis is not endometriosis, but is when endometrial tissue is found within the myometrium [the muscular portion of the uterine wall]). Adenomyosis can be a cause of pelvic pain, period pain, excessive menstrual bleeding, and more. It’s hard to know the true number of patients who have adenomyosis in addition to endometriosis, but I’ve seen it listed in medical studies as 30-80%. Endometriosis and adenomyosis can also have overlapping symptoms, so it may be hard to know which pain is from endometriosis and which is uterine associated pain. The role of a hysterectomy in a patient’s treatment is on a case-by-case basis that would need to be discussed in depth with an experienced excision surgeon – not just any gynecologist.
For any patient who is considering to have a hysterectomy (and/or bilateral oophorectomy which is removal of the ovaries), it’s important to have informed consent:
- Removing organs doesn’t treat or remove endometriosis (unless endometriosis is specifically on those organs).
- Endometriosis will not dry up if you don’t have your uterus or ovaries anymore.
- Endometriosis can still make its own estrogen even if you have no ovaries, so the disease can still cause pain and/or progress.
- Excision is the gold standard and the only way to remove the disease. This should be the primary focus of treatment. Any consideration to remove your organs should be secondary to or done alongside the gold standard treatment of excision.
Rizk et al report that “The recurrence of endometriosis symptoms and pelvic pain are directly correlated to the surgical precision and removal of peritoneal and deeply infiltrated disease.” (1)
A small 2005 study by Fedele et al. on 38 patients which looked at hysterectomy vs hysterectomy alongside removal of all deeply infiltrating lesions found that 31% of the patients who had a hysterectomy only had symptom recurrence within 2 years, while 0% of those with hysterectomy plus DIE lesion removal had symptom recurrence. (1)
- Some people go into menopause earlier after having a hysterectomy (even if they keep 1 or both ovaries.) The NHS also states on their page on Hysterectomy that after a hysterectomy, your ovaries could fail within 5 years of having your uterus removed, because the ovaries receive some of their blood supply through the uterus. If you are considering a hysterectomy or have had one, these are considerations to discuss with your doctor.
- Organ removal would only be potential pain management, and pain and symptoms may still continue post organ removal, especially if the endometriosis wasn’t excised. One can still have endometriosis complications post hysterectomy too, such as bowel obstruction, silent kidney death from endometriosis on the ureters, etc.
There are several studies looking at endometriosis pain after hysterectomy, which show that patients can continue to have pain post-hysterectomy. For example, a 2009 study by Vercellini et al found that about 15% of patients had persistent symptoms after hysterectomy, and 3-5% experienced worsening of pain. (2)
Another example is a 2020 study by Sandstrom et al was done on 137 patients 18–45 years old with confirmed endometriosis who had a hysterectomy (the main reason for the hysterectomy being endometriosis associated pain). This study looked at pain scores 1 year before and after the patient’s hysterectomy, as well as pain scores again for some participants 37+ months post hysterectomy. Post hysterectomy, 76% of the patients had relief of their severe pain, and those who participated in the survey again at 37+ months post hysterectomy continued to have similar relief. This relief was reported both in patients who had a bilateral oophorectomy, and those who didn’t. Additionally, 84% were satisfied with the result of their surgery. However, many continued to have pain post hysterectomy, but the pain was mild or moderate instead of severe. (3)
Some limitations of studies on hysterectomies for pelvic pain is that they often don’t state if the patients have adenomyosis or not, if they had complete excision alongside their hysterectomy (and if they did have excision, what was the surgeon’s skill), or what their hormone treatment status is post hysterectomy. These are all factors that can influence the outcome.
A 1995 study on 138 patients by Namnoum et al. looked at outcomes for endometriosis symptoms in those with a hysterectomy vs hysterectomy with bilateral oophorectomy. That study concluded that ovarian conservation carries a 6.1 fold risk of recurrent pain and 8.1 fold risk of re-operation. (1)
However, some other studies, including the 2020 study by Sandstrom et al mentioned above, have not shown a significant difference in pain in those who have their ovaries removed vs those who didn’t at the time of hysterectomy. (3)
Remember, removing both ovaries will put the patient immediately into surgical menopause. Not only can this cause the patient a wide array of menopausal symptoms – from hot flashes, insomnia, depression, anxiety, low libido, vertigo, migraines, aches and pains, urinary problems, and more – but bilateral oophorectomy before age 50 in people who didn’t use estrogen hormonal therapy was associated with an increased risk of all-cause mortality, coronary heart disease, and stroke. (4)
- There are conflicting studies about whether ovarian removal alongside hysterectomy has a significant difference in pain outcomes.
- Removing ovaries earlier than natural menopause can result in an increased risk of diminished bone density, dementia, and cardiovascular disease. If a patient has both ovaries removed, they should speak with a menopause specialist about taking hormonal replacement therapy until the age of natural menopause.
For this reason, it’s really important to weigh the potential pros and cons if one is thinking about removing their ovaries at the time of hysterectomy.
- Rizk B, Fischer AS, Lotfy HA, Turki R, Zahed HA, Malik R, Holliday CP, Glass A, Fishel H, Soliman MY, Herrera D. Recurrence of endometriosis after hysterectomy. Facts Views Vis Obgyn. 2014;6(4):219-27. PMID: 25593697; PMCID: PMC4286861. Accessed Dec 2023.
- Vercellini P, Barbara G, Abbiati A, Somigliana E, Viganò P, Fedele L. Repetitive surgery for recurrent symptomatic endometriosis: what to do? Eur J Obstet Gynecol Reprod Biol. 2009 Sep;146(1):15-21. doi: 10.1016/j.ejogrb.2009.05.007. Epub 2009 May 30. PMID: 19482404. Accessed Dec 2023.
- A Sandström, M Bixo, M Johansson, T Bäckström, S Turkmen. Effect of hysterectomy on pain in women with endometriosis: a population-based registry study. BJOG. 2020 May. https://doi.org/10.1111/1471-0528.16328 Accessed Dec 2023.
- Parker WH, Broder MS, Chang E, Feskanich D, Farquhar C, Liu Z, Shoupe D, Berek JS, Hankinson S, Manson JE. Ovarian conservation at the time of hysterectomy and long-term health outcomes in the nurses’ health study. Obstet Gynecol. 2009 May;113(5):1027-1037. doi: 10.1097/AOG.0b013e3181a11c64. PMID: 19384117; PMCID: PMC3791619. Accessed Dec 2023.