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  #1  
Unread 03-30-2002, 08:46 AM
new post :)

Hi ladies

I haven't posted on here for some months...but I'm at the point of utter desperation now.

I was dx with endo (minimal), after a laparoscopy (awful pelvic pain), and about two years ago I had a dx of adeno, too. We (umm..that would be me, and my incredibly patient husband) have been through the gamut, from birth control, to Lupron with Aygestin, and back again. The Lupron of course *has* stopped the pain - but the side effects are incredibly rotten to me....the hot flashes I can deal with (thanks to the Aygestin), but the depression and mood swings are just horrible.

(random though - why don't people understand that 'minimal' endo does not mean painless?)

I think I've accepted that I'm simply delaying the inevitable - I realise that the only way we're really going to *cure* this, is via hysterectomy. I guess I'm just feeling a little lonely and "out there on my own".
I'm 28, and my husband and I have agreed that if we want children, we'll adopt - so preserving fertility isn't an issue. I just don't know what to do next - I'm due another Lupron shot in about 7 weeks (see, I'm a wuss..I've only been on the darn medication for about 5 weeks!), and then my ob/gyn is going to suggest keeping me on it for 12 months (as opposed to 6). But at this point, I'm wondering whether it's worth it. Any thoughts of wisdom from you wonderful Princesses/Ladies?

Thanks...and I think you're all incredibly strong

Tess

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  #2  
Unread 03-30-2002, 09:56 AM
new post :)

Hello, i am having a TAH/BSO on apirl 9th due to endo. The doc has said it was mininal, but with all the pain and problems he is going to do it for me. I have tried 5 birth control pills, 2 hormonal pills and the lupron shot for 6 months. Which to none of them helping. I am 29 yr and have two kids. I understand where you are coming from with the doc's saying minial and like if its to make it feel better.

Feel free to talk to me if you wish
  #3  
Unread 03-30-2002, 10:31 AM
new post :)

Hi, Tess! Welcome back! I didn't have Lupron, but had Depo Provera with not good results. I decided I just wanted to have a hyst and not bother with more treatments and procedures. Here is a thread about Lupron you might not have read. http://www.hystersisters.com/vb2/sho...ghlight=lupron Some women have good experience with it, others not. I guess it comes down to when you and your dr decide a hyst is the only option that will solve your problems. s and best wishes to you!
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  #4  
Unread 03-30-2002, 11:03 AM
Lupron Lady

Hi Princesses, Ladies, guests

I'm 5 weeks into my first Lupron shot. The first three weeks were somewhat hellish, with hot flashes (not night sweats as much, though), and mood swings, and incredible bouts of depression/weeping.
I do NOT like taking medication - I'm also on Paxil (for depression...some joke, eh?), and Aygestin to counter the Lupron effects. My ob/gyn intends to keep me on this for 12 months - but I'm honestly NOT sure I can deal with these side effects.
I was at the point, prior to therapy, where my periods were horrifically heavy - we're talking a tampon every hour, at least - with huge clots, wet sheets, ruined pants, you name it. The pain on one side was simply intolerable...crippling, for want of a better word. I've had warnings at work for taking too much sick time. I'm 28 - I do know my ob/gyn isn't overly keen on doing hysters on younger women - despite the fact we do NOT intend to have children "naturally", as it were. My quality of life suffered tremendously - it still does, actually, but not to the same degree. I've bought a couple of books on hysterectomies, and I'm waiting for amazon.com to get 'em here to me...I deliberately did NOT buy the one entitled "The Ultimate Rape: What Every Woman Should Know about Hysterectomies and Ovarian Removal
" - I can't imagine the author is anything near to objective.

Should I keep going with Lupron/Aygestin? Should I request hyster sooner rather than later? Argh. So many questions.

Thankyou for being there...all of you

Tess
x
  #5  
Unread 03-31-2002, 07:19 AM
new post :)

Tess,

I just want to let you know that I understand sister. I went through the Lupron thing, and the side effects were brutal, to say the least!

I also know that the amount of Endo does not measure up with the amount of pain a woman can experience. There are women out there with Endo, and they don't even know it. There are others with a small dot, and they experience intense pain

I just wanted to let you know that I went through with a LAVH/BSO over a year ago (age 34) due to the intense pain from Endo. If you ever want to chat please feel free to e-mail me.

I also want you to know that I am still doing battle with Endo. I experienced minimal relief following my hyst., and after 7 months of complaining to my docs (about the same Endo pain) I finally found a new gyn who agreed to do another lap. She was shocked at the amount of Endo that was in my ab and she had to leave some behind (due to the location, on bladder and ureter). I don't want to scare you my dear....but I felt that I needed to tell you my story. Many women have a hyst and never have problems with Endo again....I am one of the unlucky ones I guess.


I wish you all of the best in your decision. Sending you gentle 'S
  #6  
Unread 03-31-2002, 04:00 PM
new post :)

Tess your story sounds much like mine I however did not know until after my surgery that along with the endo I had adeno. My doctor told me that this was probably the cause of my intense pain, palm size clotting and bleeding profusely every month. I know all to well about ruined sheets, panties and clothing. Matter of fact towards the end I did not even leave the house when I was bleeding as I couldnt control it even with a tampon and pad. It was just awful. The problem with adeno is that there is only one cure. A hysterectomy.
As Judester said, curing endo with a hyst seems to be a crap shoot. I am one of those ladies that has done great after surgery and I also had some left on my ureters as my doc said removing would be to risky. He did however assure me that he got every other little bit he could.
The symptoms you are having are the same ones that you will have when you are in menopause. The good thing is that you can replace the hormones. Most do very well with no problems adjusting but then again some have an awful time getting balanced and it can be a very trying time. I had my surgery in Dec 00 started hormones at 5 weeks and have done very well with no signs of return. My hysterectomy was a blessing to me even with the time that it took to get my hormones straightened out.
While I cant tell you what to do, I would suggest you talk to your doc and ask if the lupron is just postponing the inevitable. My doc assured me that for me it would be so I choose to get moving on it as I had already wasted three years of my life procrastinating about it out of fear. If the Lupron can help it then by all means I would give it a go. Your doc knows your case and is the best person to give you the advice of whether the lupron is going to be a bandaid or a true fix. S
  #7  
Unread 04-01-2002, 09:42 AM
new post :)

Hi Tess
You are in a tough position. Only you and your gyn can make this decision, based on the information you have. Endo is just so darn unpredictable.
I had a TAH/BSO four months ago, primarily due to stage 4 endo but I also had a history of fibroids and they found adenomyosis in my uterus after my hyst. I'm doing great so far ... no endo pain has returned. But I didn't take any estrogen for 12 weeks and even now, I'm taking the lowest dose they make (0.3 mg) until I hit the six month post op mark. My gyn's approach has been very aggressive with regard to the endo. He has taken extra precautions to ensure that it does not come back.
I'm 46 and didn't know I had endo until last summer when I had a lap myomectomy for fibroid removal. I had been diagnosed with IBS about 16 years ago and thought all my "belly" pain over the years was due to that. Wrong! When my gyn found the endo last summer, it was really bad. We discussed Lupron but I asked him if he really thought it was worth it for me to try, given my age and the severity of the endo. He said "no." I tried Aygestin for several months (to stop my periods) but the pain eventually got so bad I had to stop the Aygestin and have a period. That period was terrible ... like having a double period and it lasted 10 days. Believe it or not, Aygestin has some nasty side-effects too, with regard to mood swings, etc. I felt like a mean and negative person while on it.
I have read that younger women, thinner women have more difficulty with menopausal symptoms while on Lupron or after ovary removal. This could explain why you have had such a bad experience on Lupron. Other ladies say it really provided relief. But it is temporary, not a cure. Even a hyst is no guarantee that you will be "cured" of endo ... so keep reading, posting, talking to your gyn. Make sure you are very comfortable with the hyst decision. I'm one of the lucky ones because I'm doing great, so far. But not everyone is so lucky.

Keep us posted on how you are doing and what you decide to do.

Beth
  #8  
Unread 04-01-2002, 11:06 AM
new post :)

I think we can all relate to the total helplessness of not knowing how much more you can take - we've all been through the varying treatments for endo, fibroids, or whatever else and I think when you reach the point where you just can't deal with one more treatment, one more DR giving it a stab in the dark, one more month of debilitating pain, one more month of intense bleeding - when you start to ask 'do I want to go through this anymore' - I think that's when you begin to be able to make decisions and accept the consequences of those decisions.

I've recently reached the point where I'm actually looking forward to my 4/16 surgery date - only anxious about all I have to do before then - because whatever my body may give me to deal with after that can't be nearly as awful as what I've had to deal with in the past few years.

Only you can make such a huge decision in your life, but I think if you listen to that little voice inside your head, you will make the best decision for you. That's all any of us can do.
  #9  
Unread 04-03-2002, 08:05 AM
new post :)

Thankyou *all* for your kind words, and hugs, and warmth...I'm still not sure *what* I'll do, if anything. I'm on Lupron and Aygestin, and it's tolerable. Not wonderful, but tolerable...my skin has cleared up though, since I started the Aygestin (having huge zits at 28 ******!*), and the hot flashes have certainly diminished in terms of quantity.
My husband is my best source of support, and I'm so thankful to have him by my side...I know he'll support the final decision, once I make it.
Thankyou all again - you've *really* helped me smile through this


  #10  
Unread 04-03-2002, 10:25 AM
new post :)

Tess,

I myself would not do the lupron because of the side affects and what it can do to you in long term, but to each his own. I am a bit confused for your age that the doctor even suggested lupron for you.

Like I said I personally would not put my body through that. I would go on the net and look up and read up on Lupron, and/or get a second opinion.

Lisa
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