Hysterectomy for Endometriosis in Young Women
Frederick R. Jelovsek MD
Endometriosis can be associated with a variety of pain problems such as painful menstrual cramps, pain with intercourse, painful bowel movements, painful urination, generalized pelvic pain, low back pain and even leg pain. For this reason, many women end up having a hysterectomy as treatment for endometriosis, especially if they have not responded to medical therapy and the pain is chronic, debilitating, and alters a woman's daily work or leisure activities. While most women do not undergo hysterectomy until after they are past their childbearing years, some women must "face this choice" at a young age, perhaps before childbearing is completed, because it is their only hope for a permanent pain cure. If a woman ends up having a hysterectomy for endometriosis before age 30, what can she expect?
This was looked at in a study by MacDonald SR, Klock SC, Milad MP: Long-term outcome of nonconservative surgery (hysterectomy) for endometriosis-associated pain in women <30 years old. Am J Obstet Gynecol 1999;180:1360-3, in which they reviewed their experience of women under age 30 who underwent a hysterectomy for endometriosis and compared that to women over 40 who also underwent hysterectomy for endometriosis. Because this was a long term follow-up study (average 4 years for the younger group and 9 years for the older group), there were low survey response rates in the two groups (21%, 29%). This aspect plus several other design problems with the study, led scientific discussants of this paper to strongly criticize findings and conclusions. While I somewhat agree that findings about comparison of the two groups is not totally valid, we can learn a great amount by just looking at a description of the findings in younger women. It allows us to understand what to expect if a young woman chooses to undergo hysterectomy for endometriosis-associated pelvic pain.
Ending The Pain
What is the likelihood that hysterectomy for endometriosis will permanently cure or eliminate the associated pain?
In this study, 80% of the women under age 30 reported that the hysterectomy completely cured their pain. On the other hand, 50% of the women still admitted to painful intercourse (dyspareunia). It is not clear if that was due to low estrogens if the ovaries were also removed at the time of hysterectomy, but it must temper the 80% report of being pain free.
Is depression more likely after a hysterectomy at a young age for endometriosis-associated pain?
While the measurement scores of depression tests were no different for younger women having hysterectomies than for older women having hysterectomies, and no difference in the proportion of women seeking psychiatric counselling (22-25%), there was a much higher rate of reporting a sensing of loss in the years following hysterectomy. This is not surprising considering only 37.5% of the younger women completed their childbearing versus 84.6% of the age over 40 who completed their childbearing. Thus there are definitely some emotional issues that come up because of the hysterectomy at a young age.
Am I more likely to have persistent pain than if I wait to have a hysterectomy at a later age?
While the overall cure rate for pelvic pain was about 80-85%, younger women reported a higher rate of pain with bowel movements (18.8% vs 7.4%), more pain with sex (50% vs 17.4%), and even more pain with urination (18% vs 0%). This study cannot lead us to a reason for more pain except perhaps to suspect that the younger women might have had more severe disease that led to their early hysterectomy. The take-home point is that hysterectomy alone will not rid a woman of all endometriosis pain. Many women will still experience some vaginal, urinary and bowel pain which you would not necessarily expect to be cured with hysterectomy.
How likely am I to regret having a hysterectomy as treatment for endometriosis?
There is a good chance (37.5%) that a younger woman will regret having a hysterectomy for endometriosis. Even the older women had some regret - 18.5%. Whether this is to be expected or is a number that can be reduced through counselling or other means remains conjecture. The best that can be said is that the decision needs to be thoroughly weighed and carried out without haste after receiving the best information possible to make that decision.
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