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Unread 09-04-2001, 10:25 AM

Hi! I'm new to the board and am looking for all the info. on Lupron I can find from anyone out there who has tried it. From everything I've heard so far It doesn't sound like a solution. Irreversible joint pain, bone loss? just to name of couple of side effects. To give you a little history about myself. 36 years old and suffering w/ horrendous periods since onset of menses @ age 11. Currently in battle w/ the politics of getting a DR. to help. Most recent development has been in the past year. Bladder seems to be affected now also. Frequent and often immediate w/ no warning need to urinate. Blood in urine a couple months ago, never diagnosed. (Infection ruled out by cultures) I've had 3 different ultrasounds, a cat scan, and scope of my bladder. I just saw the doctor today and this time demanded a Lap. I think it's safe to say that kidney stones and innercystlecystitous (SP?) can be ruled out. I've read some posts from some women who's bladder etc. where involved w/ your endo. and I'd be interested in hearing from you also. I've suspected for years and so has my family Dr. that I probably have endo. He never felt it was the right time to try to get a definite diagnosis....the pill is the best treatment anyway, wait until you decide to try and get pregnant, etc etc. The pill stopped being and option (after many years of positive relief) a few years ago. It causes me to bleed all the time, and aggravates my already frequent and horrific migraines. I've been married for 8 years. never been pregnant even when I've tried. I no longer want children, I just want my life back. My concern is that after being off the pill so long that the "likely endo" has gone wild. Frankly I find the Lupron suggestion my doc made a little offensive...I also already suffer from fybromyalgia and am not willing to take any meds. that might aggravate that. My mother suffered from endo. and had her hyst. @ age 28. Sorry this got so lengthy! Thanks in advance for your responses!
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Unread 09-04-2001, 11:02 AM

You should of been given a lap years ago, its better to know what you are dealing with. I suffered with my periods since i first started when i was 14.. Was told all those years it was normal.The pain increased to the point i was hurting when i was not on my period and was having painful sex.So i had a lap 8 years ago... I was a mess inside ,,Dr cleaned it up and said it wasnt endo.. I felt better for a couple years.. The pain came back even worse so i went to a different Dr last year..I had another lap and he found severe Endo.. Said ive had it for more than 20 years.You need a Dr who knows what Endo looks like and will do a biopsy..I also did the lupron for 3 months.. I was so scared of it before my Dr told me his wife was on it. She also has Endo. Everyone reacts differently but I did great on it.. Just had major hotflashes..and alot of relief from the pain..But since you have fibro you really need to dicuss this with your Dr.If you can find a endo Dr who can excise the Endo, this cuts it out instead of just burning it off.... Good Luck Patty
Unread 09-04-2001, 12:40 PM
Sorry, this is even longer.....


I am 37 and, like you , have suffered since onset of menses(12). I was lucky and found a good OB at 17 who put me on BCP's. I had my first Lap at 22 which confirmed the endo. That was the first time a DR recommended hormone therapy other than BCPs. I refused and did 6 months on BCP's with no break between packs.

I also had DRs that said "hurry up and get pregnant and you'll be cured". HA! I got married at 23 but was not ready to try to have kids, so had to remain miserable while wondering if I was letting my fertility(if I had any) go away.

Two kids and 2 surgeries later, I can tell you that nothing helped. Even laser surgery from a very qualified laser surgeon. After having a number of DRs recommend Lupron over the years, I finally decided to try it. I have to tell you that I was pleasantly surprised. I definitely had hot flashes, but they did not bother me all that much. It also can aggravate depression, but it can be handled medically while you are on the Lupron and returns to normal when off the Lupron.

I am very glad I tried the Lupron. You can get the shot in a monthly or apparently a 3 month shot. My Dr only gives the 1 month. That way if you don't tolerate it well, it will be out of your system sooner. My experience with Lupron was very important because, when I finished the 6 month course, and my cycle returned, I realized that my quality of life was BETTER on the Lupron than off. This made my decision to go ahead with surgery rather easy. Now I can't wait for the surgery date to be set so I can get on with my life.

From what I have seen on the boards, Lupron seems to offer only a temporary reprieve, if you can tolerate it. As soon as I went off of it, my symptoms returned. I don't regret trying it because it helped me make my decision.

Only you can decide what is best for you, just make sure that you get all the information you want/need. Do you want to have Laparoscopic surgery to try to remove the endo? Be aware that the more the Dr has to remove/excise etc.., the more painful and lengthy the recovery. It is crucial to have a really good/experienced surgeon My last Lap involved 4 hours of poking, prodding, excising, etc....I literally felt as though someone had openned me up and beaten my insides.

If your bladder is involved(it certainly sounds like it is-but I'm no Dr!) I have heard that you need a urologist to check you out and, if neccessary, be at the surgery to make any repairs(etc) involving your bladder. I have been sent to a urologist for symptoms that are minor compared to yours. He has been very thorough and I have 1 more test to go with him before being cleared for surgery.

Good Luck!!! You have been through so much and it sounds like there is still a lot for you to work out.

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Unread 09-04-2001, 03:19 PM

Hi, Kelleen,

I can tell you about my experience on lupron. My doctors suggested it a year ago to shrink my big fibroids so my uterus could more easily be removed. I hesitated, because I never like to take anything that fiddles with my hormones. I had a bout with depression four years ago and one doctor was afraid lupron would "set me off".

However, this June, after having an eight-day agonizing period, I decided it was time to get a hysterectomy, and go ahead and get the injection to shrink my fibroids. I got a 1-month shot.

I have to say, I am amazed at how great I feel. I was told I would feel like I was in menopause. I pictured my skin getting papery and my hair turning gray, but no. Although I have hot flashes, especially at night, the only other changes I have felt have been positive. For the first two months, I was joyful every day because I had finally decided to conquer my uterus problem with a hysterectomy. I have had the willpower to lose ten pounds and exercise every day - it's so nice not to have cramps take over when I'm exercising! Maybe the exercise is why I don't feel myself getting joint stiffness.

I have had more vivid dreams, mostly anxiety dreams.

At my last check-up, my uterus had shrunk a little, but not enough that my DR could definately say she could perform a VH. I'm staying on lupron until my operation in October, and enjoying not having my period.

One other thing - I'm not the least bit interested in sex. This would be a bad thing, I guess, for some people but I see it as probably temporary, and since my fibroids have made sex painful for a long time now, my situation is no worse than it was before lupron.

Sorry that was such a discourse! I hope it helped. I wish you the best on your journey,

longwinded viola
Unread 09-04-2001, 05:50 PM

Kelleen, when I read your post, it sounds as if you already have a pretty good idea about your decision about the Lupron.

What concerns me more is that I'm not sure you have much confidence in your doctor. Can your family doctor help you find another one? (I know that's often difficult). Particularly with laparoscopy, it's important to get the best surgeon you can. You may get a lot of relief from endo symptoms with a lap if you have a really good surgeon.

Good luck with your decision. Endometriosis is just a miserable thing and I hope you get some relief soon.
Unread 09-04-2001, 06:44 PM

Just wanted to say thanks to everyone who answered my post so far. This is a great site and I expect I'll be spending alot of time here. To Denise, I'm not sure how I feel about my gyn. yet. I first saw her last Mon. and my first impression was that I do like her. She sent me home and said come back in a month and we'll do a ultrasound and talk again then. By Thu. I was calling back in tears begging them not to make me wait a month, I was miserable. Between the exam on Mon. and being due for my period I found myself once again at the end of my rope. Hence the visit today. I've been trying to get this ball rolling since last Dec. when I told my family Dr. that I couldn't live like this anymore and that I wanted to see a gyn. I met w/ his assoc. in his office who also felt that a lap was due. It took until April to see the gyn. they sent me to. He recommended the urologist, I waited for over 2 weeks and after several phone calls he finally sent his report to my family Dr. so that he could set me up w/ the uro. Then I found myself in the middle of June waiting to see him. He exhausted his tests and also said it was time for the lap. (He was very nice) I then waited for him to get his tests over to my PCP. (July by now) When I began passing blood in my urine and got tired of waiting for the PCP to react I called the uro back and he sent me for a cat scan. (Aug by now) I asked my PCP to set me up w/ a new gyn. because frankly the first seemed like an insensitive jerk. Was told I couldn't in to the new one until end of Sept. but my Dr.s wife (one of his nurses) pled my case and got me in end of Aug. And I am! I'm just tired of the waiting game! It seems like all the Dr.s think "what's another week, month... little do they seem to realize that every new month brings a new period and what feels to me like the end of the world. I know my story is not new (that's what I love about this board, I'm not alone) but I just feel like I'm at the end of my rope. Thank God for xanax and antidepressants! Did I mention that I also suffer from depression? I wonder why? Once again I find myself long winded...sorry! But this is probably the best therapy I've had in years! Peace to all of you, may the treatment you and your Dr.s choose be the best for you and may we all find relief, and quality of life soon!
Unread 09-05-2001, 10:54 AM


There is no question that Lupron exacerbated my depression.(That would be an interesting poll: How many women with active endo are on antidepressants?) I had to increase my meds while on it, but was able to taper back to normal soon after.(my endo symptoms returned just as quickly, though)

If you are one of the lucky ones,(who can tolerate it) Lupron can, at the very least ,buy you some time to figure things out. I had 6 months after my 3rd Lap, (following 4 hours of Laser surgery,) of "relief" while on the Lupron. I was able to live my life without trying to figure out when I would feel "yucky", which could really be anytime.

As many of the sisters have said, hysterectomy is MAJOR surgery. If you can tolerate Lupron(1-month shot to see), it might buy you some time to look at all your options. I did get 3 years relief from my second Lap. In my case, taking Lupron showed me what my life could be...and it was better on Lupron than without it.

So, I know that I have tried all my other options(including alternative/complimentary medicine with a practitioner I trust).

Good Luck! Here's hoping for and end to the runaround and appointment delays for you.!

Unread 09-05-2001, 10:58 AM
just reread your 1st post above

Is there any information regarding a connection between Lupron and Fibromyalgia? I have no idea, but it might be worth looking in to.
Unread 09-08-2001, 10:50 AM

I have been in your shoes. My formatting of this is of because I am very SPACEY today. I was on lupron for 6 months for endo that was diagnosed by lap. It was not fun the first month, but afterwards I was sad to see it go. I was not really bothered by menopause symptoms, the pain was much worse. I also have bladder endo that was helped a great deal. I could not take the pill because I could not stand the migraines that I would get. Lupron Was a very good chioce for me, but I know that is not true for everyone
Unread 09-08-2001, 01:18 PM

I was on Lupron for 6 months (for endometriosis). It helped me a lot for the first couple of months. Then, as time wore on, the shots would wear off quicker and quicker. They even increased my dosage around the 4th month. I know the side-effects sound scarry (don't all meds. have scary side effects?) , but you need to do your research before completely siding against it.

I also tried the bcp's, the continuous bcp's, depo provera shots, depo lupron shots, pain meds, etc. I finally got my hyst on August 10 at age 28.

You might do a search on the site and look up lupron - I am sure you will find many comments that will side both ways with it. As with all drugs, people react differently. I would also make sure you have a doctor with whom you can communicate. Always remember - you can go for 2nd and 3rd opinions if needed.

Good luck, and keep us posted.

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