Member

Posts: 28
From:BAY
Registered: Oct 2002

posted 06-14-2003 10:14 PM            

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I AM 21YRS OLD. I HAVE HAD TWO LAPYS, 3 LUPRON SHOTS, AND 5 DEPO SHOTS. I AM AT MY WITS END! IM SICK OF BEING IN PAIN DAY AFTER DAY AFTER DAY! I DON'T KNOW WHAT TO DO. THE ONLY THING THAT WORKS IS VICODIN. TAKING THAT IS NO LONGER AN OPTION SINCE I DEPEND ON IT WAY TO MUCH. I JUST NEED SOMEONE WHO KNOWS WHAT IM GOING THROUGH TO GIVE ME SOME ADVICE. I HAVE A DR'S APPT IN THREE DAYS TO SET UP ANOTHER LAPY AND TO DISCUSS MY HAVEING A CHILD. IM ABOUT READY TO THROW MY HANDS IN THE AIR AND GIVE UP. ITS EVEN STARTING TO AFFECT MY BOWEL AND BLADDER. WILL I EVER BE THE WAY I WAS BEFORE MY ENDO? PLEASE SOMEONE GIVE ME SOMETHING, ANYTHING! I WILL GREATLY APPRECIATE IT. THANK YOU

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Junior Member

Posts: 20
From:Calgary, Alberta Canada
Registered: Jun 2003

posted 06-14-2003 11:13 PM            

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I know exactly what you are talking about - pain and more pain... Mine has begun to affect my bowel and my bladder, my sex life is non existant - thankfully my boyfriend is very supportive, along with this I have Hep C, and cyst on both ovaries, the one twice the size of my ovary... I get to wait 8 months for surgery just for them to have a boo at what is wrong - So, you want to know what I do ? I wake up in the morning and listen to the birds chirp, watch the sun shine or the rain fall and enjoy as much of it as possible. I don't take any pain meds as I am recovering addict but Advil works. I could be worse off and I think so could you .... Just try to live life as best as you can and everything will work out just as planned. Hope you feel better soon.

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Senior Member

Posts: 168
From:VA
Registered: Jan 2003

posted 06-15-2003 01:00 AM            

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not to be nosey,but may i ask why you have to wait 8 months before you can get a surgery scheduled?

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Veteran

Posts: 343
From:Maine
Registered: Jun 2003

posted 06-15-2003 11:11 AM            

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Ohh ladies - I feel your pain. This is one of the cruelest diseases around. My doc agrees, and says it awful cause they don't know what causes it, don't know how to cure it, and all we get is pain and more pain and disappointment.

The only advice I can give is to ask your doc EVERYTHING on your mind - make a list beforehand if you need to to remember it all. Ask about risks of more laps, more drugs, etc. And many people, including docs, will tell ya 21 is too young to give up, but remember, they don't have endo. I am 34 and about to have a hysterectomy, and sooo many people are telling me not to cause I am so young. Young? This disease makes me feel 100. I have had 3 laps, lupron, more pain meds than I care to think about, etc etc etc. Its what we have all been through.

Just ask if having another lap will really help or cause more scar tissue, which will in turn cause more adhesions, and might make future pregnancies more difficult. Good luck.

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Junior Member

Posts: 20
From:Calgary, Alberta Canada
Registered: Jun 2003

posted 06-15-2003 01:08 PM            

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Hi DS4832... I have to wait for surgery cause it is not deemed as an emergency. I honestly don't know what they are going to even do... I am hearing alot of hysterectomy which I could deal with cause my tubes are already tied and probability of having another child is non-existant. What is this lubpron eveyrone talks about? I am having a good day so far with the pain though - How do they fix this problem as I am new to the diagnose? I have had the pain for going on 10 yrs now but no one has been able to identify it till now... Hope all is well with everyone.

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Veteran

Posts: 448
From:PA
Registered: Feb 2003

posted 06-15-2003 02:02 PM            

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I hope you are seeing a reproductive endroconologist or a specialist in fertility. A gyn is o.k., but I can tell you a specialist who performs lapro’s day in and day out will make your recovery much easier not to mention finding the disease in places that most doctors don’t think to look!!!
As for Lupron, I used to “talk it up” because it was the only thing to make my pain go away. However, I am finding more and more information regarding side effects being permanent. I will never suggest anyone take that drug again!!!
Good luck and keep us posted!!!

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Junior Member

Posts: 13
From:Columbus, OH USA
Registered: Feb 2003

posted 06-15-2003 02:23 PM            

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I am right there with all of you. A day doesn't go by that I don't curse this terrible disease, and it's made even worse by the fact that no one seems to take it seriously except others who have it. People just roll their eyes about my "cramps" and don't understand that the pain is unbearable, and it comes from my bladder, intestine, and abdominal wall where the lesions are located, NOT my ovaries. The nausea and fatigue that go along with the miserable pain make it difficult to live a "normal" life; even days when I feel better than usual, I still don't feel like doing much. Thinking of having sex with my husband scares me because I'm so afraid it will hurt. And it also hurts knowing that I may never be able to have a child; I already spent a while trying to conceive with no luck, and finally had to stop because the unmedicated pain from endo was about to make me lose my sanity... I feel so depressed sometimes that I don't know if I can go on, not knowing when I wake up or make plans to do anything if I will be able to stick it out; seeing the disappointment on the faces of my husband, family, friends, and co-workers; having my boss shake her head when I'm hurting at work and want to go home; knowing that the more I need people, the further I push them away because I don't want to burden them with my pain; feeling guilty every time I call the doctor to ask for more pain meds... This disease is driving me into a hole. And there is no cure, no reliable treatment... Even a hysterectomy is not a cure unless your lesions are located only on your uterus and/or ovaries, and mine is all over my bladder and intestine, which makes going to the bathroom painful and miserable... And it's only getting worse. And my doctor keeps trying to push things like Lupron at me, and I can't for the life of me understand why the permanent side-effects from Lupron will make my life any better!! So my options are addictive pain meds, more surgery, toxic drug therapy, or just trying to live with it. But living with this isn't having a life. The only thing that helps is knowing that there are others out there who understand, who suffer from the same things that I do, and who will not belittle my pain. Thank you for sharing your stories.

-Suz

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Member

Posts: 28
From:BAY
Registered: Oct 2002

posted 06-15-2003 10:37 PM            

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thank you all so much for replying. i don't feel so alone as before. thanks for sharing your stories also. ill let you all know what my doc says after my appt.

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Member

Posts: 28
From:BAY
Registered: Oct 2002

posted 06-15-2003 10:40 PM            

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thank you all so much for replying. i don't feel so alone as before. thanks for sharing your stories also. ill let you all know what my doc says after my appt.

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Newbie

Posts: 4
From:Louisiana State Capitol, USA
Registered: Jun 2003

posted 06-17-2003 08:02 PM            

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Hey gals, may I suggest that you all do some research on natural progesterone. Dr. John Lee has written a couple of books and many others. I have read that endometriosis can be treated with natural progesterone. I can empathize with all you though. I have suffered from endometriosis since my early 20s and was never able to have children. But I have learned so much in the past few years, although it is too late for me to have children. I am 50 years old now. Do a lot of research and don't just take everything your doctor tells you as gospel truth without doing some research on your own. My prayers are with all of you.

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Member

Posts: 47
From:North Idaho
Registered: Jun 2003

posted 06-21-2003 12:31 AM            

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I am 25 years old and also have endo. I am currently doing continuous birth control where I don't have a period. I see my doc at the end of July to decide whether I am going to start Lupron or not. I feel like skipping periods is really working. My pain is not waking me up at night and it is not as bad during the day. I am hoping he will let me keep trying this for a while longer. I am really worried about doing the Lupron. I've heard so much negative about it even though my doc swears by the stuff. It's hard because I know my doctor would never do anything intentional to harm me. I trust him with my life after all he's done for me. BUT! All the negative still lurks in the back of my mind. I am with you all! I curse this nasty disease also. Let's keep praying for a miracle drug and preventative measures.

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Veteran

Posts: 448
From:PA
Registered: Feb 2003

posted 06-21-2003 05:39 AM            

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Hi,
I agree with trying to treat in with natural progesterone if it is possible. I will say with all of my soul, you had better do your homework and make sure that it DOES NOT have one little particle of estrogen in it!! This will ignite endometriosis and symptoms.
To Suzcat....Please don’t give up!! God knows I have given up many times only to find my way back again!!! Wouldn’t it be our luck the minute we give up, they would find a cure!!! Keep telling yourself that!!! Someday, .....if they can clone sheep, they have got to come up with a cure!!!!!!!
I also suggest that some of you write on the pain management boards. They (including me) live with all types of chronic pain and they understand like no one else!!! It’s just a thought. Also, I have posted a lot of negative things about Lupron. I was on it for so long that I feel I know this drug intimately. However, please, if you feel the need to try it don’t let what I have written sway you. It’s your body, your pain, your decision. It did make my pain go away. And at the time, that was like hitting the lottery!!! Again, I won’t “talk up” Lupron like I used to because of the side effects I experienced. You have to realize each and everyone of us is different and it may not affect you as it has others. You may be just fine to try it for a couple of months. Anyway, if any of you have any questions or need to talk about Lupron, please ask.

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