Hello

Newbie Joined: Mar 01, 2005 Posts: 2 Status: **Offline**

Hi, I found this website while researching endo and wanted to say nice job! I am military and it's good to see that support. I have been trying to learn anything I can regarding endo and Lupron due to the fact that my girlfriend has been living with both. She has had 2 surgeries for endo, the last was last summer, and was then placed on Lupron treatment. Although I have known her for over a year we just recently started dating so I am learning what I can from her about everything now. I guess I am just looking for any advice on how I can help her. I hate to see her hurting and not be able to do anything. She says that the Lupron is wearing off and that she can't have any more. She has not had a period since her last shot back in October and we are concerned because the shot was only supposed to suppress that for 4 months. It's going on 6 now.
If anyone has any insight or advice for me as to how I can help her in any way I would appreciate it. Thanks in advance for any comments!

Sean

Posted: Wed Mar 02, 2005 2:39 am Post subject:

Hi Sean, Daddy here.

ok, to help out just a bit.. as far as her period.. although the docs say "4 months" ... it can go for as long as year before her periods start back up. But.. just to be safe, it is always smart ( if you and she are having sexual relations ) to do a pregnancy test.. Just In Case...

Now, as for what you can do to help her when she's hurting.... While it does not seem to be much, Be there! Hold her if she wants held, stay back if she wants you to stay back...

I know this seems simplistic and kind of straight to the point, but what better way to say it?

In all, just let her know you love her!!

Posted: Wed Mar 02, 2005 2:58 am Post subject:

Hey Sean and WELCOME!!!!! I think it is amazing to see you wanting to learn everything you can for her....that alone is a huge step many women wish their loved ones would do. As for her not having her period yet...there has been some people who didn't have a period for a year. Now that is rare but can happen. I believe 6 months is kinda of a norm for people I have come across. When you say it's been 4 months....would that be 4 months since her last shot or 4 months after it should had worn off? That could also make a difference on how long it seems to had been. Was she taking 3 month injections (1 shot every 3 months) or monthly injections? That could also make a difference. Feel free to ask away for any questions you may have or even if you just want to bounce some stuff off others. Smile

Newbie Joined: Mar 01, 2005 Posts: 2 Status: **Offline**

Hi Rina and Daddy,

Thanks so much for the responses. To answer some of your questions - as far as I know she had a couple of 1 month shots after her sugery last summer and then a 3 month shot in October. So, it has been about 4 months since that last shot. Last night she actually had bad cramping and nausea and thought she might be getting ready to start, but it just sort of goes away for a while and she never starts. I told her to call her doctor but she says all the doctor will do is schedule for her to come in and then tell her it's normal. Is it normal for her period to sort of semi-start a few times after Lupron treatment? If so, will it eventually return to a normal cycle? The thing that concerns me most is that she has pains and I guess I am the type of person who needs to know why! You know how guys are, we just want to fix things! If I knew it was normal I wouldn't worry about her so much. I am hoping that she will eventually feel normal and not have pain all of the time, because I intend to keep her around if she will have me.
I will do the things you suggested, basically just take care of her, but when she has nausea and hot flashes and cramps I just feel helpless, especially if I can't point to a definite source such as her period.

Sean

Posted: Fri Mar 04, 2005 6:33 pm Post subject:

Sadly, yes that is normal. It is right on time for her body to be tryin to get back to normal after Lupron beings her last one was a 3 month shot which would had ended in Feb. What had happened during Lupron is her Puritary gland was shut down causing her not to have periods or anything...now it's tryin to get back working again. I can say this first period WILL be horrible....so yes in that aspect what she is going throug is normal.....for those of us who has endo anyways. That is not to say it is normal for every woman.....know what I mean? It sucks when we women feel like this as we wish so bad we could be normal and pain free like most other women and not have to go through the pain and sickness all the time. Just promise me....as I'm sure it gets very frustrating for the men in our lives....that you will never start thinking that it's just all in her head. Cause it's not...it is real and we wish we never had to go through this...especially for the loved ones to also see us go through it.

Have you ever askd her to describe to you what she feels? Just a way to also help give her release in knowing you care and by her side through it. Wink

Sometimes we do just need reminded our loved ones do care how we feel...even if we're not perfect...cause we do get used to having to pretend for so many people that we are....meaning places like work and such. Just also don't always dwell on the subject w/ her unless she wants to talk about it. Sometimes we need to release how we feel to one we know loves and cares about us...yet sometimes we do want to (or wish we could) put it out our minds and try to live like everyone else as if painfree. There will be good days for her I promise, as there will be these bad ones. Smile

I just also have to say THANK YOU Sean....men like you are really rare in our lives. I know I was blessed to had found Tom (Daddy)....but I had also seen my share of men who left women cause they couldn't handle it...or felt we were faking it rather then learning anything about it. Again.... THANK YOU!!!!

Posted: Mon Mar 07, 2005 4:09 am Post subject:

Just wanted to throw this in for Sean.. I will submit it to the content page or somewhere to Rina.. it's really good to have around.. The author is anonymous.. but the words are very true and very real.. make sure you read this..

Dear Parents, Partners, Friends, Families, Employers & Doctors:

We have spent the last years of our lives apologizing for being stricken with a disease we did nothing to contract, and we can do it no longer. We are asking one last time for your understanding. We are not responsible for not living up to your expectations the way you think we should. What you seem to fail to realize, is that you are just as much a part of the cycle of the disease as we are, because you are not getting the whole of our person and our capabilities. We are not lazy, we are not a whiners, we do not make the pain up in our heads.

We have Endometriosis.

We know that we look healthy on the outside, and that is sometimes harder to accept than if we exhibited the disease in our everyday appearances. What you don't see is what our organs look like on the inside, and you don't see what living with it has done to our mental state.

When we call in sick, it's not because we need a mental health day or to go shopping. It's because we can't get out of bed from the pain. Do you think we like letting our careers pass us by? Would it be easier for you to understand if we said we had cancer and looked the part?

When we get emotional and cry at the seemingly silliest things, or get angry for even less reason, it's not because we are flaky females. It is because we are taking experimental drug therapies to combat the disease, or perhaps because we have come close to the breaking point after dealing day in and day out with the pain for which there is no known cause or cure.

When we can't have relations with our partners, it is not because we don't love you or want to. It's because we can't. It hurts too much. And we aren't feeling real attractive right now.

When you as our parents can't understand that since you are healthy, we should be but aren't - try harder. We don't understand it either. We need your support more than anyone's.

When we can't go to family gatherings or accept social invitations, it's not because we don't wish to share in your fun. It's because we feel like pariahs. You are all having such a nice time with your children and loved ones - we can't remember the last time we had a nice time, or the last time we were pain-free. We can't have a nice time with our children (some of us), because we were robbed of that chance before we were old enough to even care about having them in the first place. Do you think we need to be reminded of our battle with infertility by watching you and your babies? Or for those of us who were blessed enough to be able to conceive, do you think we want a constant reminder that we never feel well enough to spend enough quality time with our children, or worse - that we might have passed this disease down through our blood onto our daughters?

When you married us, you didn't know that we meant the "in sickness and in health" part literally, did
you? We bet you were counting on at least a 50/50 split of that combination, rather than the 90/10 ratio you got. You are our caretakers, the ones who drive us to and from our doctors, countless surgeries, and emergency room visits. You are the ones who hear us crying in the night and see us break down during the day. You are the ones who wait on us hand and foot after surgery. You are the ones that go for months on end without sharing our beds with us. You are the ones that deal with our infertility right along with us. We strike out at you when we are hurting and angry, and you take it in stride. You are perhaps bigger victims of endometriosis than even we are. You are appreciated more than words can ever say. Don't give up on us now.

As a medical professional, we are coming to you for help. We are asking you to do the job you were trained to do and ease our suffering. We do not need you to tell us that we are imagining the excruciating pain we live in, or worse yet, that it is normal for a woman to hurt. Keep up with your research, find the cause of this disease and better yet, find a cure! Stop taking the easy way out and drugging us into oblivion so that we will quiet down. We are not going to quiet down. We want answers and it is your job to provide them. You were the ones that took the oath to heal, why do we have to try to do your job? Do you understand what it means when we tell you that we literally can no longer live a normal life and care for ourselves and our families? Are you not up to the challenge to find the answers?

To those we have called friends all our lives, why have you deserted us when we needed your compassion and understanding the most? Do you see the selfishness of your actions? When we can't "hang out" and get together with you, it's not because we don't like you or we don't care - it's because we are no longer capable of enjoying healthy leisure time. Our minds are consumed with our next doctor's appointments, what surgery we are going to have next, and why we feel so sick all the time. This is not about you - it never was and it never will be. It is about us. Please try to remember what the term "friend" means.

Try to walk one minute in our shoes. We have fought a war for the better part of our years. We are faced daily with physical pains we can't understand and mental anguish we can barely cope with. We have to face a society which doesn't even know the word endometriosis, much less the ramifications of living with the disease. We have to face uneducated and unsympathetic doctors who tell us things like, "it's all in your head", and "have a hysterectomy, it will cure you", and "get pregnant, it will also cure you", when we know that it won't and have been dealing with infertility for the last however many years. We in our 20's and 30's do not wish to give up our organs just yet. That would be like giving in to the endo. Can't you see that? We have to fight to get medical treatment that insurance companies don't deem necessary, or worse, we deplete our savings because aren't able to obtain proper care unless we pay for it ourselves. We have to have surgery after surgery and subject ourselves to horrific medications just to be able to get out of bed in the morning. This is not a conscious choice we made, it was the hand we were dealt. It is enough of a war we wage just to try and live with some modicum of normalcy - don't make it harder on us by not seeing the reasons why. Endometriosis is a disease that affects all of us. Take the time to learn about it and understand why we are the way we are. If you can do that, and you can join us in the battle for a cure, then we can one day return to our old selves and live a normal, productive life. We can have a healthy relationship with our loved ones, we can contribute meaningfully to our work environments. We can stop taking the painkillers that numb our suffering to a degree and become part of the living again. Please don't judge us and declare that we are all the things we are not - until you have lived with this disease ravaging your mind and body, you cannot speak on it.

Whatever doesn't kill us makes us stronger, someone once said. While endometriosis may not kill our physical body, it kills our spirit. It kills every hope and dream we ever had of doing the things that make us happy. All of us are out here searching for a cure to put an end to the disease...we are asking you to take part in that battle and work with us on doing so. Wouldn't it be nice to have back the daughter, wife, friend or family member you once knew?

Think about it.

-Heather Guideon

Posted: Tue Mar 08, 2005 12:53 am Post subject:

Actually that is from Heather G. from our very own ERC. Smile

I edited it to add her name to it. Wink

It is called the Survivor's Letter.