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We now have a newsgroup for MEN ONLY (sorry ladies, this is the way it needs to be for now) to participate in. This is a group where the men can come to discuss issues about endo, and how it affects the men. If you are a husband, boyfriend, significant other, friend, brother, or just know someone who has endo and you would like to discuss the issues that are involved, please join us.
Hello my name is John and my lovely wife is Carey. We were married on January 15, 1994. I want to give you a little background information so that you will see that I do not know all there is to know about this disease but I do have some experience. I wish only to tell you my side. I want to get input from anyone that wishes to give it and together we will try to build a page here that will help men out that have nowhere else to go for support.
When I met Carey, she told me all about endo and what she has gone through because of it, about the painful periods and the heavy bleeding. She was up front with me about all of it. What she did not tell me were the parts that she herself had not yet experienced, which we are living now, but I am getting ahead of myself here.
Carey and I have both been married before. I was with a woman that felt she had to rule me and the children with anger. After 19 years of it I could not stand it any longer and I got out. I have two children, both over 20 now. Carey has never been able to have children. Her first husband was a man that could not deal with the ramifications of endo and used it as an excuse to find the sexual satisfaction elsewhere that he thought he was missing at home. By knowing these things then you will be able to understand why we react to some things the way we do.
Each person carries baggage with them throughout their lives and this baggage will cause them to react to different situations differently than any other person. Each of us here has to understand that we do not react to a given situation the same as someone else might. Knowing this then we, as a group, will be able to interact, communicate, and understand that what I think and feel will probably not be the same as anyone else will. And if we do agree on the subject or the answer then it is even better.
Let me back up here a bit....After my divorce, I told myself and everyone around me that I WOULD NEVER get married again. "Once bitten, twice shy". I even told Carey this. But a funny thing happened.... I found this wonderful person that helped me to understand that I was a good person and that I was worth something. And I'll be damned if I didn't fall in love with her. I also told here that I did not want anymore children. I was in my forties and I'd had a vasectomy seven years before. Well, once again, I changed my mind, got a vas reversal and we are still trying.
Things went fairly smoothly with us for the first two years or so. The problems that the endo gave here we could deal with for the most part. All of the other times we did just about whatever we wanted to do. We led an active life, doing about whatever we wanted and enjoying the things that two new people in love enjoy. But as time went on the endo became more and more of a problem and we could ignore it less and less. Where it used to be something that would bother her only a few days a month, it had become a thing that only gave her/us freedom a few days a month. Then it became a 24 hour a day 7 days a week problem to deal with.
Some of you may be just getting into the thick of endo and all the "wonderful" (NOT) things that it does to our better halves. Some of you will have been in the battle for a long time and are the vets here. It is my hope that together we can all help each other and offer the support that we all need.
Not everyone will agree with me here, but I feel that when my partner is in pain or when she does not feel well then I do not feel well. I do not mean that I get sick and hurt also, but thatm I cannot enjoy things without her there with me and when she cannot or does not feel up to doing something then as a rule I do not do it. OK, as time went on, things that we enjoyed doing became things that we could not do. Yes, this included sex. Everything that we did, walk, ride bikes, etc.... was painful for her and was thus no fun anymore.
I have to support her, that is just the way that I am. I know that she will support me one day. I am 14 years older than she is and because of that, I will need help doing things long before she will. Lucky for us that I do not get sick as a rule. I have been this way for most of my life.
I tell you these things so that you will understand that endometriosis has taken a lot away from us. We had plans for a family. We did things together and never thought about not being able to do something because of PAIN !!! We still have these plans, but sometimes they seem so far away. Now we will have to make new plans and learn to live with what live has dealt us.
(Read this all the way through)
Beer is great. Beer is one of the best things in life. There is not much that I do not like about it. I like the taste and the texture, the way that if feels and the look of it. I also love the way that it smells. Beer has a way of making you feel real good and it does make you feel real close, all warm inside. Another great thing about beer is the way that the feelings of it linger for a while. It is a very good thing that we really like. Now I know that not every one likes beer the same as me or that every one wants that same amount of beer that I do. Each and every person is different when it comes to this. I have also heard that women do not like beer as much as men do, as a rule but I am not totally convinced about this. I think that it is not the beer or that they do not like it but more how often that they want some of it. I have learned to enjoy the finer points of beer the last few years and have found that quanity is nice but quality is better. I have also noted that the amount of beer that I desire is not what it use to be. I do not like it less just do not need as much to be happy. I also look forward to the time that I encounter beer. There is nothing bad to be said about having a good beer with the one that you love.
As life goes on things happen and as it is now I have not been able to have any beer for a while. Oh it is not mine or the fault of anyone else. It is just one of those things that we have no control over. I have thought from time to time that it maybe my fault but I have come to understand that I have done nothing wrong and there is nothing being done to me. It is just the way it is. I do miss the beer, sometimes more than others. I know that my partner misses the beer also. Sometimes I know that she feels that my having to miss the beer is her fault but I know that it is not. and I know that she misses having beer as much as me. Now, I am not addicted to or obsessed with beer, it is just something that I really liked. I really thought that I was obsessed for a while. I think that maybe I did suffer from withdrawal but I know now that was in my head. It's just one of those things that when you cannot have what you want, you want it all the more plus I was used to having beer just about whenever I wanted it. Part of the problem is that I no longer have any control when I will have beer and I do not know from time to time when I will have any. I have had to learn to accept the fact of this loss of control. For a man, this is a hard thing to do. There are times that I just want to reach out and have some beer, I mean it is there close at hand. Sometimes the urge to have some beer is very strong. I have nothing physically wrong with me to stop me from having beer, but the situation does not lend itself to this. So I am learning to do without beer so often. I am also learning to not be as bothered by the loss as I was in the beginning. I have to admit though, sometimes this is very, very difficult.
I know that sometimes I wish that there was someone that was responsible for taking beer away from me. Think about it, if I could yell at someone or hold someone responsible for this then I could vent some of the frustration I feel about this. I could argue and deal with this "person". But unfortunately there is no one that I can find to take this out on. I know that my partner is not at fault and that she is as upset about this as I am, she cannot have beer whenever she wants either and I know that she likes beer. It is very frustrating that your partner wants beer and cannot have it. She has no one to yell at either just like I do not. Remember that beer is one of lives simple pleasures and one that is not missed until it is gone. When beer is gone or the use of it is few and far between remember you will live without it. There are things to help the feelings pass. You should do your very best to enjoy all the other things in life, and try hard not to think about the things that you cannot have. Besides, who said that you will never have beer again ? Hey, man does not live by beer alone.
Now you know that I am really not talking about "beer", but something we all like even better. (If you haven't figured it out yet, take out the word "beer" and insert the word "sex").
I know that you are very busy and that any problems that I may have are not that important, but I do have a few things to say. Let’s just say that this is to your complaint department.
For some unknown reason you have decided to give my lovely wife, who is my dearest friend, a thing called Endometriosis and you have decided that this thing will be extremely painful for her. Not just painful on some days and not so bad as others but on each and everyday. You have allowed us some time in the beginning to enjoy life and each other but for the last few years you have made this thing bad, very bad. Now I know that there may be a reason for your actions and I am not supposed to question them, but I am and I will.
You are messing with the one thing on this earth that means more than anything to me. You are giving her a problem that I do not feel that she deserves and I know for a fact that we do not want. We have done nothing to warrant this type of problem. It is bad enough that we are unable to conceive but now you have made it so bad that we cannot even try.
Everything in our lives revolves around this endo and because of it we cannot make plans for anything. We cannot even have any intimacy for fear it may lead to something that we cannot do, not to mention that the bike tires have dry rotted from lack of use and our dog does not remember the last time we all went for a walk.
Now you probably can tell that I am pissed about this and I want something done. I have a proposal. Let me have the pain. Give her a break for a while. Maybe just do it on a once a week deal or even better once a month... no wait, I have it... once in a lifetime and then be done with it.
Now being that we have already done this for this long, I think that we should be passed with time served. Whatever lesson that we are supposed to learn from this, I think that we have it. I think that we cannot only pass the test at the end, but probably know enough now to teach the class.
The part of this that really gets me cranked is that you allowed us the time, after surgery this time, to think that things were getting better and that we would get our lives back. You allowed her to start to feel better and to “get happy” with the feelings. Thinking that we finally were going to pass this test and get on with John and Carey’s lives. But no..... this was not to be.... well, Sir/Madame, I want to know just why in the hell you would do this to people? Whatever reason is not good enough! We have paid and now we demand that things be changed for the better. I am tired as hell of feeling like a third thumb here unable to do anything to make things better for her. I am tired as hell of watching her suffer and unable to do anything and I am tired as hell at her feeling that this is her fault and that she is screwing up our lives because she cannot do anything about this any more than I can.
If this is to go on then why can’t I take some of the problem and give her a break? I really would like to see that lovely smile and that happy go lucky attitude that she used to have and the one that I still see from time to time. She tries so hard to make light of this so as not to drag me down, but I can tell. I know her and am tuned in to her enough that she can only hide it for a short time before I know.
So in conclusion: I demand that this be changed and that it be done now. I also demand that you reconsider just why we have had to endure this for so long and to hurt so much. I do not want to have to watch her suffer with this any longer. She deserves to be happy and healthy, she deserves a life, and so do I with her.
Thanks for your time, and I await your answer.
John of John and Carey
Men have a way of thinking about things that is very different than women. Even when we have been with someone for a long time, the way that we look at things are different. We do not always see eye to eye. This is not because we do not want to but more along the lines that we just think differently. This is a known fact, I am not putting forth something that is new and completely out in left field. This is part of the spice of life. Sometimes it is the things that fights are made of. This thing called Endo has many of us men baffled as to how to deal with it. We do not feel the pain, you do not look like you're in pain. There are no outward signs that you're in pain, no cuts, scraps, broken bones, no bleeding, so what gives? You look as beautiful and as sexy as you always did and I feel all the ways that I always have about you, so what gives, I do not understand?
You also have to remember that as men we're taught from early boyhood that pain is something that you shrug off, get up and keep playing. You "do not cry like a baby", you deal with it and go on. I know this for a fact. I also know that I learned the lesson so well that even when I am hurting badly I cannot bring myself to stop, cry and go on. I have a problem even telling Carey that I am hurting about something. Something went wrong after the vasectomy reversal operation. Two days after the surgery something tore and I started bleeding inside my right sack. The pain was so bad that I could not walk but I did not tell Carey until she saw that I was acting strange and questioned me. We are this way not because we want to be but this is the way that our fathers raised us and their fathers raised them.
First lets look at pain. We know that this disease causes pain for those that suffer it and we know that the pain varies in degree from person to person. We have been told by the doctors that not every person that has it feels it the same way because it depends on where the implants are, how extensive and how many adhesions there are. Ok, these things we know but what we don't know is just how WE are supposed to deal with it, the pain that is, and what we're to do to help the ones that we love that have it.
Well I can only tell you what I have learned to do about it. First and hardest is to learn that I am no longer in charge. (I know, the women just let us think that we're in charge.) I have had to learn that no matter what I want to do I have to bow to this disease. This runs from A to Z. Now, do not get me wrong, the woman that suffers also has to take a back seat to the pain. It is totally controlling. Regardless if I want us to ride bikes down the road, take the dog out, make love, whatever I want I am not the one that makes the call. Endometriosis makes the call and tells me and Carey what we have to wait for or what is out of the question. And when I get upset about it I have to be angry at ENDO and not at Carey. It is not her fault that she has this and it is not her fault that she cannot do the things that I want. I have found that in most cases they, our women, want to be able to do things as well. Maybe more than us. If they could then they would not be suffering with the pain that they have.
This has been the hardest thing for me to deal with. I was raised that even though I talked over with my wife the things that I want to do I still like to get my own way. I am not a hard ass and I do not mind not getting my own way but I do like getting it once in a while. I like to think that the things that I want to do are the things that she wants also. But, well this is the bottom line guys, I do not ask much anymore because I know the answer. Not only do I know the answer but I also know that asking causes mental pain for her because it is a reminder to Carey what she also cannot do.
Sometimes I do ask hoping that the answer will be yeah, and sometimes I ask just because I want her to know what I am thinking but I try to keep most of it to myself.
The next hardest part is the fact that I was raised to protect my loved ones. "God help the man that touches my woman!" Well if a man made her hurt the way that she does then I could deal with it. If something is making her uncomfortable then I will "fix" it. But this I cannot fix nor can I make it better.
Herein is where the frustration lies. I love my wife dearly and feel that it is part of who and what I am to make her feel better, to fix the problem whatever it may be. When she feels good I feel good. When she is happy then I am happy and the same goes the other way. She is hurting and there is nothing I can do to stop it; now I am hurting. I can cut the grass, trim the trees or fix the car. I can do anything that needs be done but I cannot make the endo go away. Endo runs our lives, WE do not and this affects us both. Me because I am not the person that I am supposed to be and doing the things that I am supposed to be doing ( says me) and her because she feels that she is at fault for messing up all the plans we have and the things that we want to do.
I feel that I should write this like, "what I did on my summer vacation" but this is much more overwhelming. Endo, ah yes, six years ago I had no clue as to what the hell it was. My wife, then my girlfriend, told me about it and gave me all the information that she had at the time. She was totally up front with me about what she knew and what had been dealt to her thus far. But she did not know the full extent of the disease and what it was going to do to our lives.
What endo means to me. Endo means loss. Loss of many of the things that I as a man had hoped for with this relationship. It means the loss of physical contact, not just sex but the physical contact between a man and a woman. It means that my wife, the sufferer of this disease, no longer feels that she can touch me in any way. Not because she does not want to but as she said, " it is hard to feel good when I hurt so bad." The more that she hurts the deeper she withdraws within to protect herself. She no longer has the ability to extend herself in any physical way due to the pain. She feels that she can no longer extend herself in any sexual way or in a way that could be remotely considered sexual because, "I do not want to start anything that I cannot finish, it is not fair to you." It means that I come home from work and do not know what I will find. Will she be lying in bed in fetal position, face wet from the tears of frustration and pain? Or do I find her sitting on the couch trying to show a cheerful facade of what she used to be? It also means that I will come home and she will be dressed, dinner will be made and she will have made a great effort to clean the house but for this exertion she virtually collapses in my arms when I hug her because she is so worn out from the effort, bursting out in tears because she cannot face the fact that she cannot do the things that she always used to and she knows that I am tired but will do them for her. Endo means that I have to learn that I cannot do anything to make the pain go away. It means that I have to sit and hold her, stroke her hair and try my best to make her feel better knowing that I am doing virtually nothing that makes a difference for the way that she feels but probably makes her feel more secure inside. It means that I have to learn to keep to myself the anger, the frustration and the tears because I feel that she has enough to deal with and does not need this added to it. I have to be the strength that she can lean on even though I am dying on the inside. Endo means that I have to be second in this because I am healthy and I am not in pain. It means that I have to take over and do the things that need be done so that she will not feel that she has to and will try to do them. It means that I have to disregard the little outbreaks of anger that escapes the pain clenched lips knowing that it's not really directed at me but at the things I am doing that she used to do and cannot now find the energy to do. Endo also means that we cannot plan anything as a family, outings, walks or anything. It also means that "spur of the moment things" are a rare and wonderful thing. Endo means that we are having problems having children. Problems because she cannot conceive and problems because we cannot even make love most of the time. It means that the possibility hangs over us like an ominous dark cloud that we may never have any. Endometriosis means that our lives as we had planned and wished for are just that now, wishes. They seem to be long lost wishes or pipe dreams, seemingly possible but somehow out of our reach. Endo, for her, means frustration at the inability to do the simplest things and for me the frustration of trying to balance helping her do them without making her feel that she is an invalid and unable to deal with her own life. In the end Endo means death. It is the death of what we were and of what we could have become. It means the death of the woman that once was and the man that I could have been with her. It means that what we were to become with each other is now an unknown and what we will become is in the control of this disease called Endometriosis.
We have not died in the sense of no longer living nor does it mean the death of us as a couple. It only means the death of the things that we wanted and are no longer able to achieve. It means that as a couple we have become much stronger because of this fight and we have learned that each and every thing in our lives means more. Every little win is a great battle. Endo means to me that now we have to adjust the dreams and wishes we had for our lives. It means finding doctors that can and will treat this disease and allow us the time and the ability to come up with new dreams with the hopes that we will be able to fulfill them. It means that maybe we will still be able to do the things that we once wanted but we will just be starting a little later than we had originally planned. It also means having to understand that the feelings of envy are normal and that others are not to blame for the things that we cannot have. It means that we have to accept what we are and nothing we did caused these things to happen to us. We have to accept ourselves as a whole person and that if the dreams that we have do not come to pass that does not make us only half a person. We will make new dreams and modify the old ones to fit the present situation.
With endo I have found that the less that I anticipate the less that I get disappointed. The less that I plan the less that my feelings are hurt. And I will tell you right now that endo hurts my feelings a lot. It seems that the more things that I try to do to make our lives normal the more that the endo jumps up and hits me right in the ...well you know. It is really difficult not planning things, not looking ahead. Someone like me that needs to know what I am going to be doing tomorrow and someone like me that likes to be able to do things. I am not good at just sitting around doing nothing. Carey used to take my watch away from me when we went on vacation and not return it until we got back into the county. This way I would not worry about the "time". Now I have to live my life this way and I find it very difficult and maddening at times. There is a certain amount of spontaneity in most everyone and I for one enjoy it in some areas of life. But trying to live on it is another thing altogether. I want to be able to plan a trip to the mall or to the beach. We have talked about going on an ocean cruise to the Bahamas for a long time now but cannot bring ourselves to buy the tickets. Can you imagine all that planning, all that saving and then not being able to get on the boat or getting on the boat and having a wonderful time until the endo kicks up and then being stuck there for hours without a way to get home or a place to hide. Besides the feelings of guilt that the trip was ruined and the feelings that I should have not planned this in the first place. Lack of knowing what will be going on the next hour let alone the next day can drive you crazy.
The other bad part of this is the knowing that you have to keep to yourself the thoughts that you may have about just about anything that you are feeling or even worse is the one when your mind just sort of goes off on its own because of some outside stimulation. Sometimes this is real difficult and causes feelings of anger and major frustration. I can no more say that I want to do this or that or suggest that we do this or that because I do not want to make her feel bad and I do not want to be told no. So sometimes it just eats at you for a while and then you try to let it go and go on with your life, or the thing that you are now calling a life.
Words and phrases are another area that can cause problems. You see as we grow as a couple there are things that we do or did and words or phases that meant or referred to those actions. Now that this disease has become a 24/7 companion to us these things do not mean the same any more. All they do is cause memories to resurface, memories that right now we do not want to see because we can not relive them now. I know that this is different for the female part of the equation than for the male part. I know that because of this nature of the disease that whole outlook of the way things are is viewed differently by the partners. I hate to belittle a point that I have made before but I really do feel that the fact that we men do not feel the pain and discomfort that this disease causes we have a different point of view. Not wrong nor ill-advised but just from a different angle. Some times I really get upset about the facts of Endometriosis. It treats us as a couple so differently and in ways that effects us both. Even though the same things are missed and the same routines are changed, possibly forever, the way of looking at it is different. There are times that I just wish that I could have someone to vent to. Someone that would fully understand what the things I am saying really mean because they have been there. I, like most, love my wife too much to dump on her. She has enough problems to deal with as it is now and besides as much as she loves me and I her and as much as she tries to understand what I am saying or feeling, she will not be able to fully appreciate my feelings about this anymore that I can fully understand her. I think that I do and then I realize that there is a lot about this that I have not got a clue. I think that this is due to the nature of us men and women and the many ways that we see the same things differently.
Finally my biggest fear about this whole situation is that these things that we do not do and the things that we can no longer do now will be come the "normal" and the things that we wanted to do or the things that we did will become the wistful memories.
Please visit the ERC's website. It has tons of endometriosis info, the latest research information available, as well as the links to support groups in your area, and the link for the ERC's online support group.
And please visit Carey's Endo Window
And our wonderful Endo Specialist who has made an incredible difference
in Carey's health, not to mention life ! Dr. Andrew Cook
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