Ask Endochick: Supporting a Spouse With Endometriosis

Steve asked: How can I best support my spouse who has endometriosis?

First, let me thank you, Steve, for an excellent question; and secondly, for being so patient with me. Steve is a regular reader. He e-mailed me with this question, and it’s sat  my in box collecting virtual dust since. Steve, it’s been my hectic schedule keeping this post at bay, not your question.

I asked if any readers could lend some advice.. So before I get to my answer, Margaret has this to share (Thanks!!):

 Steve could get a copy of Dr Andrew Cook’s book : Stop Endometriosis and Pelvic Pain, what every woman and her Doctor need to know …. It has much information on supporting a patient with Endo. Even some comments from our patient’s spouses.

Now, to  the heart of the matter…

1) The #1 thing  you can do for your spouse/significant other who has endometriosis is just be there. Stand by her side through every cramp and mood  swing and hormonal treatment. Don’t trade her in for an unbroken, slightly newer model once the going gets tough; she’s not a used car.If she can’t have children,  you as a couple can’t have children. Don’t ever blame her for biological war that’s being waged inside her body; believe me, we get drafted into a battle zone.

After running this blog since 2006 and interviewing women whose lives have been devastated  by this disease, there are two groups. One  group has supporting partners, the other doesn’t. I have received e-mails and comments, and conducted one-on-one interviews in which women have related how their significant others have left them for a “healthy” girl, or broke up in the pre-op suite(!), or got another woman pregnant and placed the blame on his wife’s endometriosis… and it can go on.

I don’t hear those stories from supportive, present significant others. Instead, women are not afraid to share their symptoms, their pain tolerance, reactions/medication side effects and feelings. For those with chronic conditions,  communication in  relationship is important; but for women with endometriosis, and the significant others who  love and care for them, it is vital.

2) Familiarize yourself with The Joint Commission’s “Speak Up!”™ steps for patient safety and empowerment. Then have your loved one read them. See my post on this subject: “Speak Up!”™https://endochick.wordpress.com/2010/01/14/speak-up/

3) Encourage your significant other to do for her self. Yes, there will be certain times of the month, or after surgery – or even if she’s reacting badly to a medication, when she’ll need to lean on you. But too much of a good thing here can breed resentment. Again, be honest about your feelings and have an open dialogue – even if the situation cannot be changed. And never assume because she relies on you, perhaps more than you normal, that her pain is not. Perhaps a visit to a better doctor is in order because her pain or symptoms may not be adequately controlled.

4) Take care of yourself. Take some time each day for you. Feed your body nutritious food. And keep your stress down. Watch for signs of depression and ill health, and do not ignore them.

 

 

 

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3 responses to “Ask Endochick: Supporting a Spouse With Endometriosis

  1. You missed one: “Go to all Doctor Appointments no matter how insignificant” The reason it is so important for a Spouse to go to the Doctor Appointments and actually speak to the Physician, is that it puts everything into stark reality – this is affecting more than 1 life.

    When a Spouse is engaged with the Physician, it is much harder to brush off pain as “in your head”. The spouse lives it witnesses it and experiences it, so looking that person in the eye and saying “it’s nothing” or ” it’s too complicated for you to understand” will result in many many problems for the Physician, the least of which is the mound of paperwork the Spouse can generate – remember, s/he’s not curled in a fetal position or drugged out of his mind with Painkillers. This is a Spouse with focus and that laser is pointed right at the Physician’s practice.

    The other great thing about the Spouse-In-The-Room, is that the Treatment Protocol and long term planning are addressed up front – again, clear headed, not sick, Partner living in the same house – makes for missing the details a bit too much of a headache. It also requires that the Physician explain to someone other than the Patient, “what happens next”. This can be a real challenge for physicians treating Endometriosis. It brings the Physician’s expertise to the table and requires him or her to actually prove they know what they are doing in terms of treating Endometriosis.

    Believe me – I have experienced Endo with and without a Spouse and the difference in Treatment is astonishing.

  2. Pingback: Newsround 1102. | Project: Endo

  3. My girlfriend suffers from endometriosis and I feel so helpless when she’s in pain. I do all I can – sit with her, cuddle her, hot water bottles, cups of tea, anything that will help.
    But seeing the one you love crying with pain and knowing there is nothing anyone can do to cure it and to guarantee it is gone, is the most frustrating thing in the world.
    I get angry that no one can do anything.
    Are there any suggestion as to what can make it better? Really make it better?

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