by Robert B. Albee, Jr MD FACOG ACGE FOUNDER
© 1991. Last updated 2012.
Disease and pain cause stress and strain on every relationship. However, they can also offer opportunities for tremendous growth in that relationship. When illness occurs, we naturally focus our attention on the ill person. Because an illness often lessens their coping skills, the sick person's weaknesses may become more noticeable. (For example, a person who is somewhat dependent on others may become increasingly unable to function alone, while a person who is more independent may become increasingly isolated.)
Our natural inclination is to excuse these behaviors because of the illness. This is very easy in short-term illnesses where the diagnosis is straightforward and simple for others to understand. However, when there is trouble getting a diagnosis, or when the diagnosis is difficult to understand, or when the disease seems unending, the behaviors of the sick person can seem unacceptable.
Relationships that are already weak are the most vulnerable to the strains an illness produces. When partners lack communication skills, or don't use them, when they are quick to accuse and slow to forgive, then illness can cause a crippling blow.
Women with the disease often have these questions about their partners:
Why aren't they involved?
Why don't they believe I'm in pain?
Why are they so quiet when I'm hurting?
How can I meet their physical needs (and my own) when sexual activity is so painful?
Why aren't they involved?
This question implies that your partner should understand your pain and disease. Let's agree that they should try to understand. With male partners, the entire menstrual cycle is a foreign experience, and endometriosis can be totally confusing. For example, a common question from men is, "If the problem is with the reproductive organs, why does my partner blame her fatigue on endometriosis?"
If partners are involved in the *entire process* of evaluating the problem and seeking a correct diagnosis, they tend to reach a greater level of understanding. Therefore, we in the medical profession need to encourage partners to be co-students in the disease learning process. More often than not, when we see partners at consultations, pre-op, and post-op visits, I feel I am dealing with a couple who are actively building their relationship, and not allowing it to dissolve.
When I talk to partners who are not involved, I hear a number of different excuses. Some say that they think their loved one doesn't want them to be present. Some say they are uncomfortable in any medical situation. Lots of partners are ill at ease when situations seem out of their control. One partner said, "I don't see how we can spend any more money, nothing has worked so far, and we are deep in debt."
To Involve your Partner:
Choose a doctor who will educate you and your partner about endometriosis together. Find someone who will take extra time, if needed.
Know that some doctors are intimidated by certain situations. If bringing your partner or husband to a doctor's appointment makes the doctor obviously uncomfortable, for example, then you need another doctor.
Communicate! Tell your partner about changes in the way you feel. But try to do it in a way to show them that you are sharing information that can help you both, and not in an angry way, or some other way that could make them feel responsible for your pain.
Ask them to read informational materials (such as our website) and then tell you what they think about things that might relate to your situation.
If you know another couple dealing with endometriosis, get together to share information and support. It's always easier to cope when we are not alone.
Offer to set up a personal consultation for your partner with your doctor - without you. Attention would be focused on answering their specific questions and concerns.
Reassure your loved that you WANT to feel better.
Don't assume anything about their understanding or feelings - ask.
Why don't they believe I'm in pain??
Endometriosis cannot be readily seen or touched. Adequate communication about the disease and the way you feel is essential in helping your partner understand. They can't read your mind: you must tell them how and where you hurt. With men, some may be very insensitive to pain, or have never had an experience where pain immobilized them. They do not automatically understand or have sympathy for the variety and intensity of pain that endometriosis can bring.
Sadly, some relationships include routine disbelief between partners. In such situations, communications break down because the truth is always questioned.
To Explain the Pain:
Show them where you hurt, as specifically as you can.
Don't assume that they know.
Tell them every time you feel better.
Tell them each step you take toward learning more or feeling better.
Ask for their help. You may be surprised at what they have noticed and can give you feedback on.
No matter how silly it may seem to you, be prepared to try each of their suggestions. This shows you respect their judgment and welcome their participation.
Why are they so quiet when I'm hurting?
With male partners, it may be because he has been trained from childhood to provide for and protect his mate. A man watching his wife endure severe pain that he can't stop often faces a serious threat to his manhood. He feels helpless to save her from something that is ruining the quality of her life.
Other common responses by partners is to withdraw. Your partner may feel that there is no way to fight the enemy, and so they may throw up their hands wondering what to do. It is so very difficult to comfort someone you feel you have let down. The result may be silence.
To Help Reconnect with you:
Let them know that you don't expect them to fix the problem. Remind them that it's no one's fault that you have endometriosis, and certainly not theirs.
Tell them how much their closeness means to you. It will help them to know that just comforting you is meeting their duties as your partner.
Convince them that they have not let you down.
Intercourse/sexual activity hurts. Now what?
With male partners, it is very rare for men to experience anything that interferes with their sex drives. It is even more uncommon for intercourse to cause pain for a man. Likewise, many therapies for endometriosis can suppress libido. This makes it hard for a man to understand how endometriosis, pain and fear can interfere with a woman's sex drive.
Sometimes the woman suffers through sexual activity or intercourse without saying anything. She loves her partner and wants to satisfy them. However, it's hard to play an enthusiastic, responsive partner when you're in pain. And the partner who loves her can often tell that something is wrong, but doesn't know what. They may assume that they have failed to satisfy her. The couple may move further apart.
Tell your partner everything they do to satisfy your sexual needs. Men and women approach sexuality differently, and they may not understand just how important touching, caressing, and cuddling can be to you. Reassure them often.
Don't let painful intercourse keep you from other forms of sexual expression! Do what you can, and let your partner know the things you like them to do for you. Be creative!
Spend time developing in their mind your determined hope to be able to enjoy physical intimacy to its ultimate. They need to know that they are still the one you desire above all others.