Re: Endo and romantic relationships: when do you tell him you have this disease?
From: Sherri (anonymous@obgyn.net)
Fri May 23 16:47:10 2008
I agree 100% with Nicole. In my life, my endo has (and is) one of the
BIGGEST DEALS! It has affected everything. I am in the later stage of
endo and I also have IC. Endo decided if and when I could get pregnant,
and how many successful pregnancies I could have. Endo decides on a
daily basis the amount of pain I am, and trust me, it is at the least
SEVERE pain. It has caused me to be unable to work outside of the home
due to amount of days I would simply not be able to be present. Endo
dictates,daily, the activities, chores, daily duties I am able to
perform. Endo has been the cause of 5 major surgeries I have had to
have. These surgeries are the reason that today I suffer with very
intense, severe, constant pain. Every day. I now have permanent
illio-inguinal and pelvic nerve damage due to the surgeries. Which one
surgery caused it is anyone's guess. For the last 4 years I have been
going to a pain management doctor and yes, I am on strong narcotics
daily because of the pain. These are just the physical issues of my
endo.
The social/emotional issues are just as affected. I think your health
is the biggest deal when it comes to a progressive disease such as endo.
Your boyfriend/fiance not only needs to know that you have endo, he
needs to become as educated as he can about it. My husband has been
with me since before I had the dx of endo. He has been right by my side
for each and every surgery and he attends most of my doctor's
appointments with me. He is my support system and I don't think I could
make it without his help.
HOWEVER, we have been together for 14 years, and my husband DID have
trouble understanding all of this junk...Hell, he still does. There
have been plenty of arguments and tears. All of this is just based on
my personal experience, of course. I just really do think that your
health now, and the possibility of problems, especially fertility, in
the future should be disclosed as soon as the relationship turns to one
with marriage potential. You're gonna have endo and HIM for the rest of
your life!
Good luck with whatever you decide! I think you will "just know" when
the time is right to tell him.
At Thu, 22 May 2008, Nicole wrote:
>
>This reaction is completely opposite from the way I think about this
>situation. Having endometriosis is a very big deal. It affects a lot
>of aspects of your life, and I think a possible partner should find out
>about the disease and understand before you make a commitment.
>
>I know that you said the relationship is in the first stages, but lets
>jump ahead and talk about fertility issues. If you have this disease it
>affects your fertility and the possibility that you might not be able to
>have kids. That is a big part of a relationship and I think it is only
>fair for you to share this information when you feel the time is right.
>
>Endo is a BIG DEAL for a lot of women. Each person's case is different.
>I personally take 6 medications a day between the endo and my IC. Sleep
>with a heating pad, and sex isn't always great. Endo in the later
>stages can cause people to be disabled.
>
>I am sorry if this came off harsh, but a small part of me was offended
>at the reaction that it's not a big deal.
>
>My point, it is not fair to hide an important part of your life, even
>though some may not understand. Not saying you have to start off with
>this in your relationship, but it is a necessary item that needs to be
>explained well. Endo is a battle you may fight your whole life and you
>need a great partner to support you through the ups and downs.
>
>At Wed, 21 May 2008, Squea wrote:
>>
>>I guess I don't understand the big reveal. It's a part of you. This
>>shouldn't be something that's kept a secret. Yeah, endo sucks. It's a
>>part of your life. Your partner is going to need to be understanding.
>>
>>I really see it like my asthma. I honestly don't remember telling him.
>>It does affect every aspect of my life. Hell, if he makes me laugh too
>>hard, I stop breathing. It is all encompassing. At the same time, it's
>>no big deal. I get tired of people asking me if I'm ok just becuase I
>>take a puff on my inhaler.
>>
>>Endo, though I'm new to this, seems the same. I've dealt with it the
>>same way. If someone sees I'm in pain or sees me popping pain killers,
>>I'll just briefly explain that I'm in a lot of pain, but that I'll be
>>fine. Again, yeah it sucks and it's affecting my daily life. But it's
>>not a death sentence.
>>
>>Both asthma and endo suck. But, I EXPECT those in my life to
>>understand. There isn't a question. Just like I can ask my husband to
>>bring me my inhaler if I can't breathe, I can ask him to get my heating
>>pad and pain killers. IT'S NOT A BIG DEAL, and it shouldn't be a big
>>deal.
>>
>>At Wed, 21 May 2008, Kisha wrote:
>>>
>>>Hi Nikki,
>>>
>>>I agree, not telling is certainly not an option. But is sure is
>>>challenging to decide when is the right time. I think for myself I will
>>>wait a little bit, mainly because I'm feeling emotional about it all
>>>right now, but probably not for a really long time. It's just that,
>>>disclosing it has brought about bad outcomes with guys whether I brought
>>>it up early on, or after we'd been together for awhile.
>>>
>>>Anyways, I am happy for you that you have a supportive b/f, and I hope
>>>that the "big talk" goes well for you!
>>>
>>>--
>>>Kisha
>>>
>>>At Wed, 21 May 2008, Nikki wrote:
>>>>
>>>>Hi Kisha,
>>>>
>>>>Y'know it's weird that you asked this b/c I was just thinking over the
>>>>same questions yesterday... Should I tell him? When's the right time?
>>>>Will he look at me differently? Will he stay or take off?
>>>>
>>>>I've been with my boyfriend about a year now, but I was only diagnosed
>>>>with endo in March '08. I haven't really had time myself to accept that
>>>>I have endo, let alone sit him down for the big "endo talk." I've put it
>>>>off b/c honestly, my main fear is that he won't look at me the same
>>>>anymore.
>>>>
>>>>He knows something is wrong b/c I had surgery, but he doesn't have the
>>>>full story. I can't hide it from him any longer, b/c we plan to get
>>>>married sometime in the next year, and I think he has the right to know
>>>>about my endo before he makes a commitment to me.
>>>>
>>>>My friends told me to just not tell him. But, when we live together as
>>>>man & wife I think it's gonna be friggin' immpossible to hide it, as I
>>>>will most likely be curled up in a ball on the floor one week a month.
>>>>
>>>>I've been thinking about how I'm going to tell him. I've even practiced
>>>>in the mirror, I'm so nervous. If I get even watery eyed he's gonna
>>>>freak out. He's never seen me cry. And keeping my emotions under
>>>>control is going to be hard with all of these hormones I'm taking.
>>>>
>>>>I think the best time to tell a signifigant other is when you feel the
>>>>relationship is getting serious. If I had found out a year ago that I
>>>>had endo, I probably would have waited until this exact time to tell
>>>>him. Before two people get engaged I think all the ugly and not so
>>>>pretty truths from the past should be brought out into the open. But
>>>>this is just my opinion. You should tell him whenever you feel is the
>>>>right time. Only you can decide when your ready.
>>>>
>>>>Whoa, I think I wrote a sequel to your book! Sheesh. Sorry about that.
>>>>
>>>>Good luck with everything.
>>>>
>>>>--
>>>>Nikki
>>>>
>>>>And BTW, when I read about other women with such caring husbands, I also
>>>>feel a longing for that kind of relationship too. I want someone who
>>>>will hold my hand, and be there. I hope my boyfriend will eventually be
>>>>that kind husband for me.
>>>>
>>>>... if not, then I guess I could always settle for Orlando Bloom :) oh,
>>>>yeah
>>>>
>>>>Take care.
>>>>
>>>>At Tue, 20 May 2008, Kisha wrote:
>>>>>
>>>>>Hello all,
>>>>>
>>>>>I hope everyone is having a (relatively) pain-free day! Anyhow, I am
>>>>>struggling with the whole idea of when I should tell someone I have
>>>>>endo. I was in a 2 year relationship that ended 6 months ago largely
>>>>>because my ex just wasn't supportive of me with my health issues. At
>>>>>first he was, but I guess it eventually became too much for him.
>>>>>
>>>>>It's extremely painful (emotionally) to be in a situation where you feel
>>>>>like someone loves you, until they see the full throes of what this
>>>>>illness can do to you - - and just like that they are not in love
>>>>>anymore. People will often say to me, 'you're pretty, smart, funny,
>>>>>etc...why are you still single?' (I'm 34, never married, no kids). But
>>>>>a truly supportive partner is oh-so-hard to find!!! When I read the
>>>>>messages here, and I read posts from women who have husbands or
>>>>>boyfriends that literally rub your feet, are patient with you through
>>>>>your pain, or do the cooking & cleaning when you can't...I sometimes cry
>>>>>my eyes out, I really do. Because I would give ANYTHING to have that
>>>>>kind of support in my life. I know I have a lot to offer a potential
>>>>>partner--I don't define myself by my illness. I define myself as a
>>>>>wonderful woman who "happens" to have this disease called endo - - and
>>>>>lives life as fully as possible in spite of it! And I won't settle for
>>>>>any less than a man who defines me the same way I define myself.
>>>>>
>>>>>But I digress...the question I have is, when's the right time to
>>>>>disclose this illness to someone? I took some time for myself after my
>>>>>breakup...but about a month ago I met someone that I really like. We
>>>>>have nice conversations and I feel very at ease around him...but I
>>>>>haven't shared with him that I have endo. I'm wondering when I should
>>>>>do that?
>>>>>
>>>>>On the one hand, I realize that sharing the endo info too soon can scare
>>>>>a guy away. On the other hand, I know firsthand how it hurts like hell
>>>>>when you fall in love with someone totally and then he bails when you
>>>>>tell him a few months in. I really don't know what to do...and because
>>>>>endo is so unpredictable, I would appreciate hearing from some of
>>>>>you...'cause I am SO at a loss on what to do here...I basically feel
>>>>>like, if this guy knows right now that he wouldn't want to deal with
>>>>>someone with an illness - - I'd rather know that now before I go and
>>>>>invest myself emotionally.
>>>>>
>>>>>(I apologize for writing a little book here...but this has been weighing
>>>>>on me the past few days...)
>>>>
>>>>--
>>>>"Shopping is my cardio," Carrie Bradshaw
>>>>
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