Support for Women with Endometriosis

  • A question was asked in October of 2009 that reads as follows: "My daughter has been operated on nine times for endometriosis, in pain 24-7 ..Had a complete (hysterectomy). It (the endometriosis) has attached to her bladder, bowel and now nerves in her leg and her leg goes out. must use a (cane). she needs help. I am watching her die little by little everyday. pain is all over her face and I want help." No one answered this call for help. I am going to answer it now, sorry for the delay.


    Life must be wonderful without menstrual cramps; I have always thought that if men had menstrual cramps they might be a little more understanding. Alas, only a woman can understand this pain. But beyond the normal aches and pains of menstruation lies a curse called endometriosis. This condition makes the usual monthly cycle of dysmenorrhea look like a walk in the park. Those with endometriosis experience frequent extreme, knee-buckling pain, severe bloating, diarrhea (or constipation), nausea and vomiting. Some women become debilitated to the point that school, work and fun are impossible. Or, like this mother observed, a woman can "die little by little every day" because life as she knows it ceases to exist when faced with the pain of endometriosis. While watching the process happen, this mother was searching for some supportive help.

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    Supporting those with endometriosis should start by recognizing that there may be a problem. Many women may not even realize that debilitating cramps (a.k.a. "killer cramps") are not normal. If a woman misses work or appointments on a monthly basis, this may be a sign that she has endometriosis and needs specialized help. Besides withdrawing from society, a woman with endometriosis may be unaware of other clues that she has this disease. All the clues will lead to an eventual surgery because that is the only way to confirm the diagnosis of endometriosis. Endometriosis is a diagnosis that can only be made surgically because that is the only way to see if there is uterine lining tissue (endometrial tissue) outside of the uterus where it should not be.


    Fancy imaging studies like MRI's and CT scan are not accurate methods to confirm the presence of endometrial tissue in places it should not be like the bowel, bladder, lungs, or nerves. And as this poor mother points out, the abnormal endometrial tissue can implant virtually anywhere in the body, but is especially common in the bowel, bladder and other structures in the pelvis. This wide spread dissemination makes both diagnosis and treatment very difficult.


    In an effort to treat endometriosis, many women are told to have a hysterectomy (surgical removal of the uterus). But as this mother points out, a hysterectomy does not cure the problem of endometriosis. Many advocate for surgically removing the implanted islands of endometrial tissue. Although this treatment helps some, for others this option of seeking and destroying might be like trying to remove grains of sand from the ocean. Such an impossible task causes many women to have multiple surgeries in order to "cure" the problem, only to be left with the reality that there is no absolute cure for endometriosis.


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    Because there is no cure, treatment of endometriosis is really a management strategy. Everyone chooses a different strategy and no one strategy is right for everybody. Traditional treatments like medications, hormones, and surgery work for some. Alternative treatments like herbs, nutrition and exercise work for others. As with any chronic painful condition, no treatment is going to be very effective without adequate support from peers, colleagues and loved ones.


    Many support groups for endometriosis patients exist worldwide. And on those bad days it is important to reach out, like another member did in October of 2008 by stating "Today is a bad day. Endo is here with a vengance." She eventually got a helpful response, "Hang in there!! Also there is a site called hystersisters that can help cope to and maybe give some direction!!! good luck!!!"


    Thank you for responding because a woman with endometriosis needs to know that she is not alone and does not need to lock herself in a dark room every month. Even if an answer or comment does not illuminate a magical cure or treatment, just the acknowledgement that someone is listening can be tremendously therapeutic. So, anyone with endometriosis come out and join us, share your story because we are here to support you.


    Thanks to all of our community members on this site. Because of you, everyone with any type of pain can utilize this valuable support network. Sorry for any delay, it is hard to keep up with pain.


Published On: August 30, 2010