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I WAS DIAGNOSED WITH ENDO ABOUT 10 YEARS AGO WHEN I WAS 21 YEARS ...

Posted at 2:31 PM on Jan 18, 2009 by kat1977, #38137
I WAS DIAGNOSED WITH ENDO ABOUT 10 YEARS AGO WHEN I WAS 21 YEARS OLD. I WAS TOLD I WOULD HAVE TO HAVE A TOTAL HYSTERECTOMY BY THE TIME I WAS 25. I LIVED OUT OF STATE AND DID NOT LIKE THE DOCTOR I WAS SEEING SO I JUST DISMISSED IT. YEARS LATER AFTER MOVING BACK HOME AND GETTING MARRIED TO A WONDERFUL MAN WHO DOES NOT HAVE CHILDREN ( I HAVE TWO) I WENT TO MY OLD DOCTOR THAT I WAS REALLY COMFORTABLE WITH. TOLD HIM ALL OF MY SYMPTOMS AND ABOUT MY PAINFUL PERIODS AND HOW ME AND MY HUSBAND HADN'T GOTTEN PREGNANT AFTER FOUR YEARS OF TRYING. HE SCHEDULED ME FOR A LAPROSCOPY TO LOOK AROUND AND SEE WHAT WAS GOING ON. HE IS ALSO A FERTILITY SPECIALIST SO I KNEW HE WOULD TRY TO DO WHATEVER POSSIBLE FOR US TO HAVE A CHILD. I HAD A CHOCOLATE CYST ON MY RIGHT OVARY, ENDO, AND THE ENDO HAD FUSED MY BOWELS TO THE LEFT SIDE OF MY ABDOMEN. I HAD ALWAYS HAD PROBLEMS WITH CONSTIPATION BUT I JUST THOUGHT I WAS LIKE ALOT OF OTHER WOMEN. HE TOOK CARE OF ALL OF THAT AND WHEN I WOKE UP HE TOLD ME HE WOULD LIKE FOR ME TO GO ON LUPRON ONCE A MONTH FOR THREE MONTHS. THIS WAS ON SEPT. 11TH. I HAD READ ALL THE BLOGS BEFORE HAND ABOUT LUPRON AND I WAS VERY SKEPTICAL AND JUST PLAIN SCARED ABOUT TAKING IT. MY DOC TOLD ME IT WOULD HELP W/ THE PAIN AND AFTER TAKING IT FOR THREE MONTHS IT WOULD HELP US GET PREGNANT. I TOOK MY FIRST INJECTION BEFORE I LEFT THE HOSPITAL THAT DAY. THE FIRST COUPLE OF WEEKS I REALLY COULDN'T TELL ANY SIDE EFFECTS EXCEPT FOR HOT FLASHES. THEN THE HEADACHES STARTED. I HAD ALWAYS GOTTEN MIGRAINES, BUT THESE ARE 100 TIMES WORSE. I COMPLETED MY THREE MONTH CYCLE OF TAKING LUPRON ON NOV 6TH. I HAVE TURNED INTO A MOODY, CRANKY, ANGRY PERSON. IT IS UNCONTROLLABLE. AFTER MY LAST SHOT BEGAN TO WEAR OFF I GOT A HEADACHE SO BAD MY HUSBAND HAD TO PICK ME UP FROM WORK AND TAKE ME TO THE E.R. THEY TOLD ME IT WAS HORMONAL AND THAT I WOULD JUST HAVE TO DEAL W/ IT. THEY GAVE ME A SHOT AND SOME SAMPLES OF BUTALBITAL. THE SHOT DIDN'T DO ANYTHING AND THE BUTALBITAL ONLY MADE ME SLEEPY. I HAD THIS HEADACHE FOR OVER A WEEK. THEN IT JUST WENT AWAY. WHEN I HAD MY LAST SHOT MY DOC TOLD ME I WOULD HAVE A PERIOD WITHIN 6 TO 8 WEEKS AND WHEN I OVULATE AFTER THAT I SHOULD GET PREGNANT. IT TOOK ME OVER TEN WEEKS TO START. I FINALLY STARTED MY PERIOD A COUPLE OF DAYS AGO. I FEEL AS IF I HAVE ALREADY HAD A CHILD WITH ALL THE BLEEDING AND THE PAIN. IT IS UNBEARABLE. I FEEL SO SORRY FOR EVERYONE AROUND ME BECAUSE I DON'T EVEN KNOW THAT I AM BEING HORRIBLE. THROUGH THE LUPRON I HAVE GAINED 20 POUNDS, HAVE HAD SEVERE HEADACHES, HAVE BECOME VERY FORGETFUL, VERY VERY MOODY, AND JUST FEEL LIKE A TOTAL DEFERENT PERSON AND NOT IN A GOOD WAY. I WILL NEVER TAKE LUPRON AGAIN!! NEVER. IF ME AND MY HUSBAND DO NOT GET PREGNANT AFTER THIS I WILL JUST HAVE THE HYSTERECTOMY AND BE DONE WITH IT. I AM HOPING I BECOME LESS MOODY SINCE NOW MY BODY IS STARTING TO GO BACK TO NORMAL. OR AT LEAST I HOPE IT IS. HOW AM I SUPPOSED TO GET PREGNANT WHEN I AM SO MOODY THAT NO ONE CAN STAND TO BE AROUND ME? PLUS I NEVER WANT TO HAVE SEX. DOES ANYONE KNOW EXACTLY HOW LONG IT TAKES LUPRON TO TOTALLY GET OUT OF YOUR SYSTEM?
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Reply 8 months ago on Feb 13, 2009 by tracyo, #17055

I don't know how long it takes to get it out--I had one (1) shot and have experienced severe joint pain since November 08, and memory problems. I am hopeful it will eventually go away, however I'm not sure. If you get any further information, please post. tracyo

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Reply 6 months ago on Apr 16, 2009 by em0880, #18919

Not sure how long it stays in your system but I can tell u that my last injection was in ' 05 and it's ' 09 and I am now 29 yrs. old and am still suffering the consequences of taking that AWFUL Lupron shot! I have hot flashes constantly like 24/7! and people always look at me & say "are u o.k- u are to young to be having hot flashes" but I promise I do! I hate it they are SO EMBARISING. I have Constant Pain in my pelvic area and my lower back, I have gained a total of 134 lbs.! and I have +4 pitting edema daily. I have the worst mood swings and depression and I have also had the laproscopic surgery for the Endo. and it has come back with evengence! I am a nursing student for the 3rd time due to this chronic illness and the effects of the Lupron injection. I wish I could tell u more to help u. I am so sorry, I would not wish this on my worst enemy. I hope I helped some. My advise would be to find an endometriosis specialist in your area and make an appt. before u make the big decision of a hysterectomy.

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Reply 6 months ago on Apr 29, 2009 by kam1869, #19315

I was diagnosed with endo when I was 25, but had been suffering since age 18. I also suffered from constant painful ovarian cysts since age 18 as well. The endo, however, got to the point where I could not stand erect when I had the pain - and at that time I was diagnosed with an extensive case: lesions on the bladder, some on the bowel, as well as the uterus, right ovary, tube and the area that I forget the name but gives you horrendous back pain when endo lesions grow there. I went a year or so until I decided to go on the Lupron, and I was on it for six months. The only side effects I got from it were the typical hot flashes and some minimal weight gain. Other than that, I never felt so great! I loved not having a period because I had no pain for six months! But I do suggest you get a second opinion before rushing into a Hysterectomy - if you still have endo lesions there are options like laser and cryo-surgery that are much safer and less stressful to your body (and mind). I don't know how long the Lupron stays in your system but you may want to consider a body detoxing regimen to "cleanse" yourself of what's left of the medication in your system.

Over the years ( I'm now 40) I went from having strong periods to one year where I got only three - and two of those had to be induce by hormone pills.
Then I continued to suffer from on and off Ovarian Cysts. Finally, last year, an Ob/Gyn removed my right ovary and tube because that was the source of all my frustration - turns out the fronds of the tube adherred to the ovary. I also had surgery for lysis of adhesions back in 2005 on the right side. And yes, I have pitting edema in both lower extremities. But be aware those of you who have had endo: I now have Reflex Sympathetic Dystrophy my left arm and leg from two separate injuries. Most girls/women with RSD have had/or do have Endo. Both are immune system self-attacking disorders/diseases. Please be careful with your body because a simple sprained ankle could leave you in pain for the rest of your life. RSD is incurable and it spreads from one limb to another. To find out more info go to www.rsdhope.org.

I found all this out the hard way, so I'm passing it on to you, and I hope you NEVER know what it's like to suffer from RSD...I'm sorry Lupron didn't work as well for you as it did for me but hopefully you can rid your body of what's left of it really soon. Take care, Endo Sister and best wishes - Kim

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Reply 4 months ago on Jul 13, 2009 by whitney09, #21446
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Reply 4 months ago on Jul 13, 2009 by whitney09, #21447

I have been on the Lupron shot since August of 08 after I had surgery to remove the Endo... here it is mid july, I just turned 18 and do not want kids right now (although I do want them in the near future) I just want to know what are my chances of having kids? Im still currently on the shot and have been taking the 3 month shots and I am about to get another one in August, I have horrible head aches, I have gained 40 lbs in the last year being on this, Im horrible to people around me, hot flashes are 24/7. I do not have pains anymore being on this shot, but I just dont know if I want to get the shot again...Should I? I keep reading all the posts online of how it messed up alot of womens mestrual cycles and I want a kid within the next 2 years or so...What should I do? I just need help with all Endo stuff! Please help me =]

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