How to help my husband cope.

[Jessil07]

Hello fellow endo sufferers!  I have recently been diagnosed with endometriosis.  I have had laparoscopic surgery last January and am anticipating a second surgery in roughly a year's time according to my OBGYN.  I also have IBS.  My husband and I are trying for a baby but between my disease and his hypogonadism it's a rocky road.  My question is how to help my sweetheart cope with my illness.  He seems to be in denial.  I have to remind him that I'm sick when he questions why I'm laying down in the middle of the day.  I have recently managed to get a part time job that pays very well.  I work about ten hours a week which is about as much as my body can handle but it still doesn't seem to be enough for him.  I'd love to be super wife but I just can't manage that what with the constant pain and nausea and whatnot.  What do I do?

[ipurr2]

in regards to your hubby...education is key....help him to understand the disease....it is inflammatory...inflammation causes many issues in the cells of the body...perhaps share the "spoon theory" with him...google it...it will be there and it explains well what those of us with endo have to do...it is unfortunate the men have to deal with a sick wife...but "in sickness and in health" they need to remember ... we did not chose to be sick...I wanted children, a career...instead I got illness...wasn't really my dream either...so they need to remember that we did not chose to be ill...anymore then they chose to marry someone who is ill...there are forums for men to get support in coping...
I would also suggest seeing an endometriosis specialist if you want your life back...the disease can be cut out and will not return in that area if it is fully excised like a cancer...they have to cut it out at the root and go past the diseased tissue cutting until they are into healthy tissue...the sooner the disease is cut out...the better chances at complete recovery but the disease has to be removed...it's like a grain of sand in your eye ~ it may be tiny but it can cause devastating pain so even the tiny lesions, the clear lesions have to be removed along with all the deeper chocolate, purple, red, white and clear lesions...only a true endometriosis knows all the looks of endo to remove it...there are very few dr.'s trained in endometriosis excision so make sure they truly are an endo specialist and not just saying they are...if they won't remove bowel endo...or they want to put you on lupron or some other drug such as that...they are most likely not skilled enough to remove all the disease..there are true excision specialists who can in fact remove all the disease and give you back your life...chances are good you will have to travel to see them, but it's the best shot at getting your life back...and if you decide to do surgery after surgery as many of us have had to do because we had no one guiding us to see the specialists it will not get better and you will end up as I did...in the end seeing the specialists and missing out on much of your life going from dr. to dr. and being in pain....so get to the specialists ladies...husbands...get your wife to the best of the best...it will be worth it!

[Pottersteven]

I'm a husband to a wife with really bad endometriosis, like she is in bed 75 percent of the time. I can only say is I know where men are coming from, I love my wife and will do anything for her. After about 3 years I do get tired a frustrated of waiting on her hand and foot. I'm not trying to sound like a ***, and I know that endo causes alot of pain. I see it everyday, also I always think what kind of day is it going to be when I get home. Sometimes I just want to tuck tail and run, but I love my wife and remember the good times.

[Jessil07]

Thank you both for your comments.  About the birth control.  I was on Lupron to control the endo.  I'm off of it now because my husband and I are trying to get pregnant.  Wish us luck!  I do have to be careful with birth control pills.  They make me bleed.  Scary.  I like the idea of a family member talking to my sweetheart.  Maybe I can get his brother or someone to convince him to come to therapy with me?  We'll see.  I also like the idea of the doctor talking to him about how serious this is.  Any other good ideas?

[teddybears4ever2]

Well I know that there is no cure for endometriosis and we have to have surgeries about once a year if we have bad endometriosis.  Unfortunately it always grows back.  The reason for this is that some of it is so deep that they can't get it all and it can come back in as little as one period.  Many women can't take birth control because it gives them headaches, or turns them into robots.  Please be very careful about saying that someone should use something that they are not comfortable with it. Could you take your husband to the doctor with you and have him talk to him/her?  I wish you luck with this.

[Mimi81]

One of my friends had severe endometriosis and she only had one surgery. she had fibroids removed too. She had it last year and recovery was rough for her but she's doing great now. I hear of women who have several surgeries for Endo, but not within a year. didn't they put you on birth control after that? I am on continuous birth control for 6 months, and I had very little endo, which was painful as hell before my surgery. It's been 3 months since the surgery and I have no symptoms of it but I take my birth control religiously to prevent it from coming back. If your husband won't go to therapy, maybe you could get a family member of his who you are close to and let them talk to him. Good luck and you might want to talk to your doc about the birth control

[Jessil07]

Thanks for your concern.  They did take out the endo, as much as could safely be removed, but the pain came back within a couple of weeks and my doctor said I may need surgery again in April or so of next year.  Is that too soon?  I think couple's therapy would be an awsome idea but I've tried to get him to go to therapy before and he won't go.  Sigh.

[Mimi81]

So why didn't they take out the Endo during the laparoscopy? Why do you need a second surgery? I am sorry about the IBS, just Endo was good enough for me, I had surgery last March, almost three months ago and it is rough just trying to recover from it all. No more endo pain though, which is a big relief! so your husband needs to take into consideration the vow that he made to you, "in sickness and health". I really have compassion for women and all these problems they have to go through. Maybe you just need to sit him down and really explain your situation and ask him to be patient with you. Or you might want to try couples' therapy. i hope you feel better.