Newsletter #1

Newsletter #2

Hello and welcome to the first issue of the electronic MENDO newsletter. First off let me say that I hope that with your help and your submissions we will be able to make this a regular thing. I truly do not want to try to write this newsletter by myself and try to speak for all men. This, I hope, will be an open forum for all of us to speak out on the matters that bother us and the things that we, as men, have to deal with on a daily basis as far as this disease is concerned. I know that I do not have the answers nor do I profess to know all of it. I am but one voice in many that has to deal with the ramifications of this disease called Endometriosis.

And to you ladies out there reading this, I really do want input from you as well on the MALE side of this issue. How you see that we deal with this, sometimes badly, sometimes with compassion but how we deal with it.

I have received many responses from men and women world wide about the MENDO page and the insight that it has brought to them.. People say things like....”I never knew that men felt this way” or ...”Thank you for the insight on the way that my husband must feel. I never really understood.” One of the ones that touched me came from a man that said.... he has tried for years to be able to explain to his wife just how he felt and that the page gave him the ability and the words to finally do this.

I would like this newsletter to be an open door for us men to finally get across to all the women that we do feel, we do hurt and that we do sometimes fail to understand. But at the same time we will be able to let our better halves know that they also do not always understand where we come from or how we deal with this problem. I think that we all know that Endo is a couples disease, not just a woman’s disease, and that we all have to learn to deal with it. There are many issues for us to face here, feelings about relationships, families, personal feelings of worth and place, and the overwhelming financial issues that seem to follow this disease. Sexual issues for both the men and the women. Some of the issues will be simple and straightforward whereas others will be very complicated. Not all the answers or suggestions that we will put forth here will apply to each and every one. Some of the issues will not be answered at all because they have too many variables the we all do not know about. Remember we all carry emotional baggage with us from the lives we have lived and the persons that have interacted with us, (sometimes badly ). But hopefully, in the long run, we as a group will be able to help each other, offer suggestions or gather insight as to the ways that others have faced and conquered the same problems that we have. I think that the vast majority of us have faced or will face the same basic problems that this disease causes in the relationships of us, the men and women of endo.

So please, offer up your support, your thoughts and your suggestions. Give all of us the help that you probably wished that you had at the time you needed it most. Your support is the only thing that will keep this newsletter alive. It is very gratifying to receive email like the ones above telling you that you truly did help someone. Your submissions will be put in here as space allows. You do not have to put your name if you do not want to, you can just sign it anonymous or just “Joe from Anywhere in the World.” Let us try to not intentionally hurt others but to help. This disease has caused us all to become one big family bound together by one common string, Endo.

John M. Blondin
President, MENDO
mendo@oocities.com

This one will kill you. Not literally but will really mess with your head. Anticipation, like thinking that when I get home she will be feeling good and we can go and do this or that or the other thing. Like calling home at lunch time and finding a cheerful voice there telling you that she feels fairly good for a change and then anticipating what will go on when you get home. Or the one that just happened, anticipating that we were going to the hospital for surgery and at the last minute the whole thing was canceled. 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 of on its own because of some outside stimulation. Sometimes this can get 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 that 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. Sometimes I really get upset about the facts of Endometriosis. It treats us as a couple so differently and in ways that affects 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. Some one 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 become the “normal” and the things that we wanted to do or the things that we did will become the wistful memories never to be lived again.

My name is David E. Gregory and my wife Michele has chronic stage 4 Endometriosis. For all you “men” out there that don’t believe in this or are in denial about it, let me park my truck between your legs tomorrow while you try to go about your daily business. Maybe then you will have a miniscule idea how much your lady hurts. If that doesn’t get your attention, do her a very big and gracious favor and hit the road. Go on and get out of her life now before she gets any worse and you get hurt. I can’t “feel” my wife’s pain, but I can darn sure see it in her face every minute of every day. I get to see her cry while trying to simply sit down and watch a television show because her insides are all twisted up.

Am I having a bad day today? Yes, you could say that, and that’s another reason for my writing this. You see, on those rare occasions when she does have a relatively good day, we try to cram all we can into as short a time as we have. We never know how the next hour will be. We have had to leave the grocery store in the midst of shopping because her “endo” suddenly acted up and doubled her over. Try getting a baseball bat in your kidneys every now and then when you least expect it men. No warning or anything. No pattern of timing. Flat out of nowhere, totally blindsided, BAM! Can’t even breathe because it hurts so bad. Isn’t that sooo funny guys???? Want me to hit you again? No? Too bad. BAM!!! See, told you. You never know where or when. BAM!!! Got ya again!

That’s how you wife feels. Or your girlfriend as the case may be. I only wish that my words “could” hit you in the &*$#% so you “could” feel it. All we as men can do is imagine the pain. If you really care about her, you will get off your BUTTS and help me and the other “men” get something done about this. Forget about the ball game or the fight on T.V. or the golf date. SHOW your lady you care about her. Go to the doctor’s office and watch her “pain” as that un-feeling piece of crud tells her, “It’s all in your head, Honey. It’s just one of those WOMAN things.” Yeah, right. When was the last time you went with her and decked that idiot? When was the last time you canceled YOUR plans to be with her just to hold her hand because that’s ALL you could do for her? Yeah, I thought so. As long as she gives “you” what “you” want, when “you” want it, everything’s fine and dandy ain’t it? What about her? Ever consider “her” feelings? Right again huh? And you call yourself a MAN. HAH!!! Not even close. Wuss is more like it.

Now that I’ve had my say, let me give you some cold, hard, FACTS. Out of all the “Doctors” out there, especially those that call themselves “Gynecologists” I conservatively estimate 4% of them REALLY know and understand what Endometriosis is. What kind of odds does that give YOUR lady of finding one of them? Would you put $1,000.00 up with those odds on a ball game? I didn’t think you would. But you WILL gamble your lady’s health and state of mind on it. What does that tell her about how much you care? What does that tell you about yourself? You will, on the other hand support all kinds of research and “cures” for impotence. Case in point....VIAGRA!!!!!! There have already been NINE of “us” die because of that “urge” to get it on, both “during” and “after” the act!! Exciting ain’t it? I can’t wait to get my hands on some and give it a try. Hold your breath, will ya’?

We “men” also support all sorts of research, and spend un-Godly amounts of money to find a cure for and fight “Breast Cancer.” Why is that? ‘Cause we can “see” that. Here’s a scenario for you.

Billy; “See that gal over there?”

Bubba; “Which un”?

Billy; “That one with no boobs.”

Bubba; “Yeah, ain’t that awful”?

Billy; “Shore is. Man, we got to DO something about that Cancer stuff.” “Can’t have that happenin’ to MY woman.”

Bubba; “You got that right, Billy.” “I don’t want no woman what looks like that.”

“We got to git congress to spend some more money to find a cure.”

Billy; “Yep.” “Think I’ll call up “Big John” when we finish these here beers and tell him to put another bill out in the House to fix this.”

Bubba; “That’s a right good idee.” Think I’ll do that thang too.”

See what I mean? We are so concerned about how she “LOOKS”. We want a “trophy” to show off. Don’t matter how she “feels” inside, just so she “looks” good when we want her to. Oh yeah, we got to have our “supper” cooked too, and ready when we get home, or it’s gonna’ hit the fan fer sure!

When are you “men” going to wake up and smell the coffee? When are you going to get off your BUTT and really do something to HELP your woman? What is it going to take to get your attention? Do I personally have to lead the “strike” and picket outside YOUR house to get you attention? Yeah? O.K., I’ll be there, just as soon as I get finished over at Bubba’s place. If all of us would take ONE LOUSY DOLLAR out of our pockets, and send it to some research lab every week, we would have this cured in no time. Just think what that would do to show someone close to you how much you cared. That’s asking too much though isn’t it? Four bucks a month? Heck, that’s two less beers for ME!

Therein lies the key word....ME! If it don’t directly affect ME, then the heck with it. But it does, guys, it does. Ever wonder “why” she is so “ornery” all the time? It ain’t ‘cause she’s a B%$#&. Don’t ever make the mistake of letting me hear that. I’ll ask you real nicely why you think that way. When you say, “Aw, she says she hurts all the time”, my ball bat is right outside in the truck. Go back and read paragraph “two” and you’ll see what I mean.

I guess by now you are wondering when I’ll be through “having my say” aren’t you? The truth is, this whole story is “my” say. Someone has to do it, and I haven’t heard “you” saying anything. I haven’t seen “you” in the Doctor’s office lately. You would have seen “me” there. I’m not “ashamed” to be seen going to the “woman Doctor’s” office with my wife. That’s where “I” belong. Right beside her all the way. That’s where “you” belong too. Then, go out and tell all your “buddies” how easily this could happen to “their” women too. Tell them how much it hurts when the “Doctor” goes poking and jabbing on her to tell how far this has spread. Tell them how much “YOU” cried when you found out there was NO CURE, and it may very well cause her death. You can’t do that can you. Nope! That would make you “less” of a “man.” MEN don’t cry. BULL!!!!

Endometriosis, the “women’s” disease. Don’t effect us men none‘atall. Guess again. It DOES affect us men. Truth be known, ENDOMETRIOSIS is the single leading cause of more “domestic” violence than anything else. “We” men just don’t want to accept it as real. How would you like it if everytime you complained about something hurting, SHE said, “Aw Honey, it’s just one of those MAN things.” It’ll pass. Quit your bellyaching and fix my supper.” “Oh, while you’re up, bring me another beer too.”

Now, I’ve said my peace. What are YOU going to do about it? I look forward to seeing YOU and hearing YOUR voice the next time someone starts talking about how to spend some “slush” money. You know, we “really” don’t need that new stadium right now, our wives need this money a lot worse than we do. I can hear it now???????????

David E. Gregory
Endometriosis Sufferer

These are David’s thoughts, what are yours ? Send us your ideas, thought or comments.

“Thank you for expressing your feelings so well on this page! I have a coworker with endo, and this explains a great deal about how she deals with me and others here at work. Having read your remarks, I have mixed emotions about endo: glad that it’s not me that’s (all) the cause of her moodiness, sad that this affects her life so much. I’m grateful that my wife doesn’t have endo and doesn’t suffer from this; sad that she and her husband do. I’ll try to be more supportive, more forgiving, more upbeat on the job, more cheerful - so maybe I can be a “bright spot” in her life, a non-source of pain. Thanks again.”

I hope that you have enjoyed this and that you will send us your thoughts on the newsletter and on endo. Tell us the ways that you cope with it.

Thank you and see you next time.........

John M. Blondin
President, MENDO

Those of you that are receiving this have not given me any feed back and therefore once again the newsletter will have to be solely from me. Please, if you wish to input anything to the newsletter, even if you wish to remain anonymous, please send it to: Mendo@oocities.com or to the Endometriosis Research Center.

To bring you all up to date, Carey had surgery in February 1999 and that went very well. Dr. Cook of the Omega Institute of Health successfully removed all the endo within the body of my darling wife and friend. Along with the endo Carey lost her left tube and ovary but we had anticipated this and had given permission for it. The left side has always been fully involved with endo and the ovary had been trapped before. He spent over three hours zapping away with his trusty ruck bogers laser gun. The bowel, the ovary, the ureter and the left sidewall were all in one large mass. Let me note at this time that due, we feel, to the endo and the adhesions and the way that the left ureter was bent and kinked this is the reason that Carey suffered from a kidney stone on the left side. The ureter was bent so tightly that it kept back pressure on the kidney all the time and could not drain the way that it is suppose to. Most of the time was spent taking out the adhesions and endo and freeing up the organs that were supposed to be in there. Oh, the bladder and the uterus were one with adhesions again. I cannot say enough about the Omega Institute itself. Let me tell you that we were the third patients to have surgery there and the first for Dr. Cook. The way that we were treated was excellent. It seemed that we were in a fancy hotel instead of a very modern hospital. The other thing that still stands out about that experience is the way that I was treated, like a member of the team of John and Carey, instead of the normal way and that is of the “husband of Carey” and in the way. I have to tell you that from the information that I have received from many of the women/men on the newsgroups this was not just for us. It is the way that all of the patients are treated.

We watched the days roll past waiting to see if the five week dead line would be surpassed. We had never been pain free for more than five weeks before. ( Five weeks is about the time that the pain from the surgery wears off and the rest of whatever comes in) When that day came and went we had a celebration. We had been riding our bikes and had gotten back into the routine of taking the dog for a walk each night after dinner. Having the faith that we have in Dr. Cook and knowing that from what we saw in the video tape that all the Endo was gone we started to put our lives back together. Remember, our lives had been put on hold now for nearly five years due to this damn disease. Five weeks came and went. We could bearly contain ourselves and the joy we felt. Six weeks and we were hit between the eyes. Everything had been going along so well when the pain came back that we were floored to say the least.

Now please read on------
The pain was in the same place, left sided, as the pain had been for so long. We knew that Dr. Cook had gotten all the endo out, but the pain was back. I have to admit that for the first few days we were really depressed. We could not come up with a reason that fit what we knew. Carey knows this disease inside and out and I have been learning. Carey had been told that she had very aggressive endo and adhesions. We thought that maybe that the pain was from adhesions. We know that they, adhesions, can reoccur in a very short time. The part that was bothering us the most was that the pain was in the same place but didn’t seem exactly the same. Carey did not want to tell the doctor. She tried to not let me see but I could tell. She went deep into depression. Once again she was afraid that by telling me that the pain was back that she would let me down. We talked and finally decided to let the doctor know. We sent Dr. Cook email and let him know what was happening. He called back and talked to Carey about it. They came to the conclusion that there was something else going on within her. He did not feel that the endo was the cause of the pain. He thought that maybe it might be a nerve trapped in some scar tissue. He wanted her back out there to check it out.

Now I have to tell you, although I do have a good job and I do get paid well it does not cover everything that is needed. Our budget was set up and running when we both were working. Since endo came and visited us, ( without leaving when asked or ordered) money has been very tight, I know that I am not telling you all anything about this because it seems to be one of the side effects, if you will, of this disease.

Have endo, have no money!!!

With our families help we have been able to go to Omega when we have needed to. But it has taken a heavy toll on us. We have sold our motor home, I have spent hours and hours stripping wire or working overtime or whatever we could do to pay for the trip. We have insurance and it pays, ( SLOWLY) for some of the cost but it does not pay for the cost of the trips, for hotels and meals while were going out there and coming home. It takes us right at 12 hours to drive out there from our home here in Florida. Savings is down to squat, you who have this disease know this situation all to well.

In April, Carey went back to Omega. She and her sister flew out there. thanks to Nicki and her husband Andy who paid the flight and hotel bills because we did not have the time to save for and could not come up with the tickets etc.) There she met with Dr. Cook and Dr. Hubble, the anesthesiologist, who deals with nerve pain among many other things. They did some investigation and came to the conclusion that she had a nerve trapped in some old scar tissue. The consensus is that the pain had always been there but it was masked by the pain from the endo. Once the endo was cleared up then the pain from the trapped nerve stepped forwarded. Let me correct myself here, the pain did not step forward – it jumped right out and grabbed her. The pain was so much like the endo pain that I think that it was felt as part of the endo pain. She would be doubled over when a wave of it hit. It was 24/7 just like the endo.

Dr. Hubble first did a nerve block to see if that made the pain stop, and it did, immediately, so the next day he did cryotherapy which is where the nerve is frozen. This gave her some relief until the third week of June, then the pain came back. So we went back. This time I was between jobs, I work as a construction electrician and it worked out that I had a new job at a hospital starting but had time to take the trip. Once again the cryotherapy was done and once again it only seemed to work for a short time, however it was discovered that there were TWO nerves trapped, the ilioinguinal and the iliohypogastric. The ilioinguinal is a nerve that runs along the hip bone and down into the groin actually into the outer vaginal area, while the iliohypogastric is higher on the left side and runs down towards the hip bone. (That isn’t the medical description, just ours so that you have some reference as to where I’m referring.) The ilioinguinal nerve seemed to be taken care of, however the iliohypogastric was giving her the continued problems.

When the pain came back in mid July, only a couple of weeks later, the pain was again similar but different. This pain was like muscle spasms on top of a nerve. They were excruciating and were literally doubling her over and stopping her in her tracks. And the “attacks” were coming closer and closer together so that walking from one room to the next was almost impossible. Dr.’s Hubble and Cook put their collective heads together and tried to come up with something that could be wrong here and something that they could do to help. (These men have worked with us on this and the endo and have shown the most compassion that we have ever seen). They suggested that we do another nerve block and if that helps then great, but if it doesn’t, she will have what is called conscious pain mapping. The nerve block did NO good at all.

Pain mapping is done by putting the patient in the operating room, sedating her and then once the instruments are in place in the pelvic cavity, the patient is brought to a conscious state while the doctor is probing to find the exact location and reasons for the pain and asking the patient to tell him when something he does causes pain. After discovering some adhesions and a loop in the large bowel, along with a whitened area just below the hip bone on the left that made Carey cry out in pain when barely touched, Dr. Cook decided to put in a laparoscope and fix the problems he had identified. The area of white tissue that did not look just right was on the inside top wall of the abdomen where the pain was coming from. It was decided that that area would be lasered off. While he was in there he looked to see if there was any endo and there was not. Remember I am sitting in Carey’s room and watching the whole process on the television and able to communicate with the doctor during the process.

The spasms were back within a couple of days and after talking with Dr. Cook again, he decided to give Carey a medicine called Zanaflex to see if it would stop the spasms which were centered over the nerve and causing severe pain at every spasm. Carey could feel it coming on like a “Charlie Horse” does in the calf muscle. After taking the medicine the spasms starting happening fewer and fewer times. She has now weened herself off the medicine completely and has had no spasms since. **Whew**
So this is where we are at this time.

“My girlfriend has Endo. At first when I just started learning about it, it was hard for me to talk about this subject, but now I need to express my feelings about it. My girlfriend is 20 years old and in the final stage of Endo. It kills me to see her in pain every single day of her life. The only way for her to get out of bed in the morning is to take drugs and half the time they don't work. The only that I can do is be there for her, give her my love, and that really pisses me off that I can't ease her pain. The people that say that she just can't take pain or that she is weak are full of shit. My girlfriend is the strongest person I know and shame on you for saying that she can't take it.

If you were put in her shoe's, you wouldn't last one hour let alone 9 years. I can see it in my girlfriends eye's when she is talking to people and telling them that she alright, when she's really not. I love to take my girlfriend out, and don't get upset when we are at a restaurant and she has an attack and has to go blow up on the toilet. I don't get upset when we are making love and we have to stop because she is in pain. If any of you guys out there do, I will put this in my girlfriends words, "how would you like to have a knife shoved into your private parts with the force of a freight train." I personally can't imagine how painful this is for her all I can do is be there for her, hold her hand, and give her my love. I hold a great deal of respect for my girlfriend, and all of you guys out there helping your girlfriends fight. My girlfriend use to try to scare me away cause she thought that I deserved a girl better, that "could" go out all the time, and wasn't in constant pain.

Well the results ended with me only becoming closer to her, and being a friend as well as a companion. She is scared as well as I am, of what will happen in the future with this disease, but you have to be strong and never give up. On an ending I would like to say this is a wonderful Foundation that started up, and I look forward to reading the next news letter!

Thank you!”

"Men coping with women's health problems: the case of endometriosis" Introduction In spite of the discourse of many American feminists whereby all men are the same everywhere, the definition of masculinity and male identity changes over time, varies from culture to culture and has different meanings depending on the individual. Although the feminists of the 70s and 80s were extremely useful in redefining the place of women in society, many of them have written on men and masculinity’s in the most negative, aggressive and subjective terms. Their assertions often strongly depend on their individual bad experiences of relationships with men. For instance, Marylin French’s “All men are rapists” (1978) in the literal as well as in the metaphorical sense is definitely tainted with the sad fact of her own daughter being raped. Actually, theses extreme views on the male non-ethics go into contradiction with the popular credo of the male ethic of altruism, i.e. that men should protect women and their children. Therefore, villains or heroes, men are also victims in various ways. Victims in the public sphere when serving during wars or performing “death professions” like mining, fire fighting, construction. Victims also in the private sphere when they divorce or commit suicide due to a more and more competitive working place. I believe that exploring the various conceptualisations of masculinity is the key to understanding their handling, not to say confronting, situations where precisely wives, sisters, mothers, friends, co-workers face a difficult health condition. I take the case of endometriosis more particularly because it is a gynecological problem and it is associated most of the time with chronic pain. I see at least three levels of study: first, endometriosis is a feminine disorder which men cannot experience, therefore are not very much involved; second, pain is a feeling that men are socialized to endure, and value occasionally; third, chronicity can be difficult to accept because it is a reminder of a certain powerlessness. In serious symptomatic cases, pain may be hard to comprehend and handle ; dyspareunia may impair sexual relationship ; infertility fades chances of fatherhood ; laparoscopy may trouble family life not to mention the costs in countries where social welfare programs do not cover the expense ; hormonal treatment may be very difficult to cope with because of mood swings and other side effects. Endometriosis has been addressed in numerous studies in medical, scientific, social and psychological studies since the first histological description was given by Von Rokitansky in 1860 and the term of endometriosis was coined by Sampson in 1921. Personal and social construction of the disease (Capek 1998), its emotional and psychosocial impact (Silverton 1991) on women have been reviewed. However these studies addressed issues about the female aspect of the disease. According to the 1998 figures of Statistics Canada, there are 7 millions of legally married, legally married and separated couples or couples living in common-law unions. Knowing that 1/5 of the women in that age bracket suffer from endometriosis, it is now advisable to ask the question of how men (all marital statuses together) deal with the situation. Villains, victims or heroes?

In this paper, I will review the literature on that subject and report the case of one husband, John Blondin who lives in the USA .

Methodology I had originally planned to interview three men to report their account on the impact of endometriosis on their marital and/or family life. I would have looked for a mechanism of balancing the different aspects of their lives and coping with the situation after all. Because of the poor results I had in the review of the literature, I decided to search the Internet for an association of men dealing with endometriosis or, at least a male interest group. Very unexpectedly, I hit a website called “MENDO-Men and endometriosis” which provides support to men whose significant others or family members suffer from the disease. The second and last search result is also very valuable. In a feature article, Dr Robert B. Albee replies to four major questions that women ask about their partners. No articles and two websites for the male side of endometriosis versus several female patient’s chat groups, non-profit associations (The Endometriosis Association, the newly created World Endometriosis Association and the Endometriosis Research Center, Boca Raton, FL), numerous personal web pages all around the world!

Unfortunately the MENDO site contains a single report, that of John Blondin, the creator the website himself. However the report is so rich that it provided sufficient matter for a preliminary research. I immediately contacted John who very graciously replied to additional questions which I felt needed to be further developed. Due to the time frame, I could not get other reports for the purpose of this paper.

Case report John Blondin, 48, has been married to Carey for more than 5 years. Carey, 33, has had endometriosis since her menarche, although the diagnosis was confirmed in July 1992. . Pain has been so extreme in Carey’s case that she could not attend classes normally during her studies, lost her job/s/ because of her absentee record, divorced because her husband could not or would not understand the pain. Carey underwent five surgeries, the last one in February 1999. She is now remarried to John and lives an endo-free life. But not a pain-free life: at the last laparoscopy in July, Carey is suffering from what seems to be trapped nerves from the previous eight surgeries that she has had.

John created the MENDO site in February 1998 to share his feelings with other men whose wives suffer from endometriosis. John recognized that the disease affected both of them. The study of John’s account and Dr Albee’s feature article revealed three different levels of discourse. The first one deals with the involvement of the male spouse; the second relates to the relationship to the pain. The two preceding levels are amplified each time the disease manifests its symptoms, that is to say due to the chronicity of the disease.

At that stage, I will use the term illness when referring to John’s (or Carey’s occasionally) account on endometriosis. In bioanthropology, the difference between illness and disease resides in the fact that illness refers to the patient’s own experience about his/her condition and disease to the description by the physician. Now let’s concentrate on the levels of discourse and the mechanisms of coping.

Involvement Endometriosis is a gynecological condition. As Dr Albee points it out, men don’t experience menstrual cramps, and pain during intercourse is rare in males. Consequently, it is very difficult for men to realize the discomfort if not the intensity of the pain. Besides, most men have a limited knowledge of the mechanisms of the menstrual cycle. But isn’t the situation understandable when women are not even educated on the facts about endometriosis? One fifth of the female population between 20 to 44 years of age suffer from it and still it is a disease which remains unknown to the majority of them. Some gynecologists are not expert enough to diagnose it. Dr Albee met with several men; he states that men are not supposed to understand. However they should try to understand. John understands. He observes all the little manifestations of the disease. He knows exactly when the pain starts before his wife actually says it.. He is involved in the sense that he says that he is part of the mechanism: he “cannot enjoy things without her” and does not feel well when she does not feel well. He tries to help and protect her. “The […] hardest part is the fact that I was raised to protect my loved ones. 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.” Protect, fix things are verbs that define Western masculine ideal. These duties are mentioned in the Top 10 list of the things women love most about men. Also, John incarnates the knight-type masculinity. Tough with enemy, gentle with the beloved one. The knight is very vivid today. Since the Middle Ages and King Arthur, to the chivalrous sacrifice during the wreck of the Titanic where 80% of the men died so that 70% of women and children be saved, nothing has changed. Men are still expected to put their lives at the disposal of the women’s. The example given in class by this girl who asked her boyfriend to go and help the lady with the heavy bags in the street shows that the pattern is part of enculturation. According to Dr Albee, coping with the disease often imply adopting an attitude of withdrawal in most men. So much with the chilvary! and Is John an exception? Carey’s first husband gave excuses to abandon his significant other which became not so significant after a while. He “found his pleasures elsewhere”. As I mentioned earlier, men are generally not at ease with feminine problems and often overlook them. Part of the solution should be that they could get advice and education from the doctors and sexual counselling. As John mentioned it, attention and help may be difficult to obtain from doctors, because of the lack of expertise in some cases, or because of the discrepancy in the patient-physician relationship. John and Carey have found that in many cases physicians are not inclined to listen to them or to engage in a conversation relating to this subject because in many cases they know more about endometriosis than the physicians do.

Pain Numerous studies have been published on pain and gender, and language, and the mind-body dichotomy, pain in cultures and the culture of pain since we all live in different sensory worlds. We are raised to believe what we can see or touch. Some men are insensitive to pain. The warrior-type of male identity endures pain. The video we watched in class showing integration of new marines in the crew is horrifying but real. I heard that in some football teams, “initiation” was violent too. This is the Boy code, society's definition of what it means to be a boy, as William S. Pollack described in his book entitled Real Boys : Rescuing Our Sons from the Myths of Boyhood (1998). Basically the Boy Code says : Don't be a wimp, don't be a wuss, be tough, don’t cry! John wrote about it in his report: “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.” In the popular belief, this implies that men do that, women don’t. Women don ’t deal with pain. This is another reason why mistrust is often latent in marital relationships because endometriotic patients have no visible scars or wounds. Nothing has changed in the physical aspect of the patient. Endometriotic women do not look like they are in pain. With endometriosis men have to “bow to the disease” and be second, to take John’s words. They are not part of the battle field. However if the husband’s duty to fix is impossible to meet, comforting is something they can do. Chivalrously, John proposes to be given the pain in place of his wife. An interesting reason that John gave to account for the Boy Code is the fathers’ responsibility. “[…] We are not this way because we want to be but this is the way our fathers raised us and their fathers raised them.” Blaming of the father is one theme of Robert Bly’s book Iron John (1990). Bly sees men as victims of absent or incompetent dads. Bly proposes that fathers should spend more time with their sons to help them find their marks on the way to malehood in fields such as the man’s role in the family, in marital relationships, or work. According to Dr Albee, painful intercourse is a threat to manhood too because of failing sex. What happens is that women sometimes endure the pain of the intercourse to please their husbands’ desires without saying a word to sustain the marital relationship (so much for the women not dealing with the pain!) but the relation is not “enthusiastic” and the partner assumes that he has failed. We see here that the key word is Communication. There is a lack of communication within the couple. Coping with the pain means withdrawing for some men because there is no way to fight. They have nothing to do but to stay there silent. Some men just escape the house and satisfy their sexual needs elsewhere. Dr Albee suggests a solution to remedy the problem: to find other forms of sexual expression. Couples should be creative and approach sexuality differently : “touching, caressing, cuddling”. This destroys the partisans of the theory of the “men prefer quantity, women quality” of sex. Both are victims in a situation with endometriosis, both should find a solution together. In John’ s terms, a man has to come to grips with his female side before he can fully understand and then help his partner. Chronicity In Carey’s case, pain was omnipresent as of 1996. After two years of marriage, John felt loss of the life they lived during those first two years. He also used the word death of his previous life (when they were just married). He describes all the things that they were able to do together (not to mention the sex) and is longing for those moments to come again. I mentioned the powerlessness that John felt regarding the fact that pain was recurrent. He felt like a “third thumb”.

John copes with the incessant pain by not “anticipating”. Although he likes organizing and planning things well in advance, he practices the carpe diem. One day at a time. One activity at a time.

John concludes its report by raising the point that they as a couple had become much stronger because of the fight. We can see here the cohesion of the couple who fight together with the disease but individually, John felt the disease was an enemy that was stronger than him and that causes frustration, anger and discouragement.

Conclusion It is impossible to draw conclusions from one sole report. It is crucial that future research projects aim at collecting reports in sufficient number to be statistically significant. Th Canadian consensus on Endometriosis recommends that qualitative data should be gathered on lives of endometriotic women. The men’s role in the lives of those women would give an answer to one angle of the prism. A questionnaire can be posted in women’ s chat group so that they could give it to their husband, in the MENDO site of course, in a gynecologist’s office for those not familiar with computers and internet. A linguistics study can address the semantics in the report. A cross-cultural comparison can give an idea of the possible differences according to identified cultures (Europe, North America, Asia). A whole new topic to cover!!

Personal note When I selected that course, I was not extremely enthusiastic about it. Because I am not a feminist (a womanist rather, I discovered the term in the text book), I am not very interested in gender studies because it seemed to me that it only leads to an aggressive, endless, dead-end and sterile debate around who’s got the power and whose gender should rule over the other. However, since my arriving in Quebec in 1993, I have come to observe that women were more aggressive about the men in their discourse and actions too, whereas men adopted a more resignated attitude. I found it strange. So having no other class that I could take for the summer, I finally decided to register to learn more about a situation which I was not sure whether it represented the reality. I learnt a lot from the class and I thank you for that.

I suffer from endometriosis, though my case is fortunately not as serious as John’s wife. Therefore, on another level, the class helped me in understanding some of my husband’s reactions to the disease. I then decided that I wanted to know more on the subject. I soon realized that the topic was not only interesting but also novel and promising. Moreover, I tried to limit the bias of my being a woman and a patient at the same time. I hope I succeeded in that matter.

Until next time --- have pain free days.

Sincerely,

John M. Blondin - MENDO

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Carey's Endo Window - with Endo's Sister's Survival Kit

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Since January 22, 2000