Endometriosis Support Group

I have found no one I know is interested in them getting support, since they don't have endo themselves and I think are too busy supporting me....
One thing that has been invaluable to me is therapy. I was in it before, but I find it really helps in sorting out how I should act/treat others when I am in constant pain and even how to try to live life with this disease. In Canada therapy is free, so maybe there is something you can find that is not too expensive or covered by plans.
I think without therapy I would be living alone and with no friends. Reaching out on here is a great way to get help, but therapy allows you this constant input and venting that I find is so helpful in dealing with endometriosis and all the hormonal garbage it comes with.

Good luck and you are a great partner for trying to find him support and admitting you are having a hard time!

my mother is actually looking for support. its very hard for her to see me deal with endo. i know lots of times she comes on here and reads many of the womens posts and feels better knowing im not the only one dealing with this. i wish there are support groups in my town but i have yet to find them anywhere. if you find any let me know

MENDO!! :)

This sites intention is to offer support for men, worldwide, who must deal with the "male" side of endometriosis. This is a place to gain or share information and inspiration from men whose significant others or family members suffer from this disease and to offer suggestions on coping with the pain and frustration of not being able to help or to "fix" the problem or to "make it better". Ideas, poems, thoughts, suggestions, questions, comments, personal stories, etc... will be accepted here and offered as well.

Link:
http://www.geocities.com/HotSpring...

mendo@geocities.com (this is a website dedicated to men who love women with endo. My husband is a member). Check it out - it is great support for the men and terrific articles!

Hugs!!

Great article from Dr. Albee - a read for all wives/hubbies who deal with endo!

The Partner's Predicament, or What about the Men?

by Robert B. Albee, MD

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.

Endometriosis is a disease of women. Men do not get endometriosis (they never even experience a normal period, much less the pain of endo). Women with the disease have these questions about their partners:

Why isn't he involved?

Why doesn't he believe I'm in pain?

Why is he so quiet when I'm hurting?

How can I meet his physical needs (and my own) when intercourse is so painful?

Why Isn't he Involved?

This question implies that men should understand your pain and disease. Let's agree that they should try to understand. As noted, the entire menstrual cycle is foreign to a man's 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 wife blame her fatigue on endometriosis?"

If men 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 men to be a co-student in the learning process. More often than not, when I see men with their wives 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 men who are not involved I hear a number of different excuses. Some men say that they think their wives want them not to be present. Some say they are uncomfortable in any medical situation. Lots of men are ill at ease when situations seem out of their control. One man 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 spouse about endometriosis. Find someone who will take extra time, if needed.

Know that some doctors are intimidated by certain situations. If bringing your husband to a doctor's appointment makes the doctor obviously uncomfortable, 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 him that you are sharing information that can help you both, and not in an angry way, or some other way that could make him feel responsible for your pain.

Ask him to read informational materials (such as this newsletter) and then tell you what he thinks 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 him with your doctor (and without you). Attention would be focused on answering his questions and his concerns.

Reassure him that you want to feel better.

Don't assume anything about his understanding or feelings. Ask him.

Why Doesn't he Believe I'm in Pain?

Endometriosis can't been readily seen or touched. Adequate communication about the disease and the way you feel is essential in helping your partner understand. He can't read your mind: you must tell him how and where you hurt.

Some men are themselves 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 him where you hurt, as specifically as you can.

Don't assume that he knows.

Tell him every time you feel better.

Tell him each step you take toward learning more or feeling better.

Ask for his help. You may be surprised at what he has noticed and can give you feedback on.

No matter how silly it may seem to you, be prepared to try each of his suggestions. This shows you respect his judgment and welcome his participation.
Why is he so Quiet when I'm Hurting?

Men are trained from childhood to provide for and protect their mates. 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.

A common response to this situation is to withdraw. Your husband may feel that there is no way to fight the enemy, and so he may throw up his 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 him Reconnect with you:

Let him know that you don't expect him to fix the problem. Remind him that it's no one's fault that you have endometriosis, and certainly not his.

Tell him how much his closeness means to you. It will help him to know that just comforting you is meeting his duties as a husband.

Convince him that he has not let you down.
Intercourse hurts. Now what?

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. This makes it hard for a man to understand how pain and the fear of it can interfere with a woman's sex drive.

Sometimes the woman suffers through intercourse without saying anything. She loves her husband and wants to satisfy him. However, it's hard to play an enthusiastic, responsive partner when you're in pain. And the man who loves her can often tell that something is wrong, but he doesn't know what. He may assume that he has failed to satisfy her. The couple may move further apart.

Now This:

Tell your partner everything he does to satisfy your sexual needs. Men and women approach sexuality differently, and he may not understand just how important touching, caressing, and cuddling can be to you. Reassure him often.

Don't let painful intercourse keep you from other forms of sexual expression. Do for your husband all that you can, and let him know the things you like him to do for you. Be creative!

Spend time developing in his mind your determined hope to be able to enjoy physical intimacy to its ultimate. He needs to know that he is still the one you desire above all others.