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Unread 06-14-2002, 06:46 PM

First my history. For years I have been having VERY painful periods, with the most pain when I poop.

Starting this year, my periods got really heavy too, and I started bleeding rectally with my period. The first (stupid) doctor I went to said that I had an intestinal virus. When I pushed her to ask why the rectal bleeding only happened with my cycle, she said, "You wouldn't want it to be anything else, because then you would have to have surgery."

I went to another doctor later that week that ordered colonoscopy.

Long story short, I had a large chunk of endometriosis that had attacked my colon and eaten through all layers of the colon muscle. The only thing holding back the endometriosis was the mucosal layer. Not good.

I had a bowel resection on 05/20/02, it was done laproscopically with a 4 inch incision for the surgeon to put her hand inside.

While in there, they were surprised to find out that I had almost no other endometrial lesions. But my uterus was HUGE (both surgeon's words). I saw the video tape of my surgery and it looks to be bigger than my fist with a golf ball sized fibroid on the outside of the uterus.

Now for the question. Both my colon doctor and my ob\gyn are worried about a repeat attack of the endometriosis. The colon doc wants me to have a hysterectomy. The ob\gyn said I have two choices: hysterectomy (with either none, both or one ovary removed), or a course of Lupron.

Has anyone here used the Lupron? How well did it work for them? How long did it take for the shrunk fibroids to grow back?

I just had the bowel resection and am not looking forward to another major abdominal surgery. Emotionally, I was ready for the bowel resection, but I cry when I think about losing my uterus without a fight. But if it isn't going to buy me much time, I'd rather get it all over with.

Your experiences will help.


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Unread 06-14-2002, 07:06 PM

I am in a very similar situation-rectal pain and painful periods. Luckliy my dr caught things in time before too much damage was done to my colon. Had a lap sx March of this year and was diagnosed w/endo. My uterus was completely adhered to my rectum and I have adhesions throughout my pelvis in many areas that couldn't be safely lasered. I opted for Lupron to treat those areas and am in my 3rd month. It has been difficult but still tolerable. I can tell myself it's only temporary and hands down it's better than the pain. I have seen a naturopath who gives me a homeopathic remedy, lachesis, which takes the edge off some of the side effects (but not all). My gyn assured me this was safe and wouldn't counteract Lupron. I also see an acupuncturist and she is telling me to pick up the book by Dr. John Lee "What Your Doctor Won't Tell You About Menopause". Apparantly it's a different line of thinking entirely from the MD point of view on endo treatment.
I am looking at a hysterectomy in Sept when my 6month on Lupron is complete. Dr says Lupron will dry up the adhesions and make them easier for her to remove more of the endo and decrease the risk of reoccurance.
It's not been fun on this medication and although it increased my pain for the 1st couple weeks soon after the pain decreased and had almost completely subsided by 2 months. I've had an unexplained relapse the past 3 weeks but am starting to feel better.
Shot comes in 1 and 3 month doses. I opted for the 1 month because I feel more in control of stopping it if I need to.
Their website:
List of side effects can be found under myths and truths.
I've experienced headaches, moodiness, vaginal dryness, urethral discomfort, hot/cold flashes, loss of libido. Sounds bad but for me it's still better than the pain.
Unread 06-15-2002, 03:56 PM

Thanks for the reply. I am so glad that you caught your colon endometriosis early enough to spare your colon.

Thanks for the website, I will be scouring it for more info.

It sounds like you are three months ahead of me on this treatment path, so if you have any words of wisdom, please let me know.

I hope all will go well for you.

colo-rectal endometriosis, bowel resection 5/20/02. Researching Lupron or Hysterectomy for further treatment.
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Unread 06-16-2002, 06:52 AM

I can only offer my experience, which was with only one shot of Lupron.

I hated it.

I had itching, depression, hot flashes and neuralgia within a week of the first shot. I realise my experience is NOT typical - most women do really well on Lupron - but some of us gals just don't tolerate it too well. There is a website that you should be wary of - it's called - and although it's very informative in SOME areas (with regards to statistical evidence, it ***** - there's very little clinical backup) - it's VERY biased against Lupron, and might prevent somebody from starting a treatment that might actually work for them.

I had Aygestin add-back estrogen therapy to try and alleviate some of the side effects - it certainly did get rid of the hot flashes for the most part, but Aygestin in itself has undesirable side effects.

Oh - I wasn't taking the Lupron for fibroids - it was to reduce any remaining endo implants that my doc missed at laparoscopy.
We had intended initially to do a full 12 month course of Lupron, but after talking with my husband (who, it has to be said, was a Saint during all of this) and my doctor, we figured it would be better to just solve the problem once and for all. July 30th can't come soon enough

So, although my experience with Lupron wasn't positive, I just wanted to say a word or two about that website too. Don't believe everything you read on the net

to all

Unread 06-16-2002, 09:19 PM
I felt compelled to post

I personally have not had any exper. with the Lupron, as my had me on Danazol (Danocrine).

However, several of my friends and co-workers have taken Lupron and every one of them say that if they could go back and do it over again that they would NEVER take that drug again.

The most disturbing part is the side effects that they still suffer from the drug.....and have not taken it for years!! Will they continue to get worse...30, 40, 60 years down the road they could still have these side effects from that stupid drug.

Personally, that is a chance that I AM NOT willing to take.

I too had a hyst. for my endo & adeno and I am amazed at how much it has helped. I am a new person. All of my friends that I mentioned earlier....they ended up with a hyst. anyway.

In my opinion......Lupron only buys you time, as the endo comes back just have a whole new set of problems to deal with along with it.

Personally, the decision to have a hyst. was the best one that I have made yet.

Best of luck sweetie

Unread 06-17-2002, 04:11 AM

I agree wholeheartedly

Lupron will only buy you time - it might be as long as five years or even more, but essentially, a women with endo that causes pain will eventually have to face a hysterectomy, if she wants a real chance of permanent relief from symptoms.

Drugs are strange things. Both my husband and I work in pharmaceuticals - most people would be *astounded* to know that by the time a drug is approved by the FDA, it's usually been tested on LESS THAN 4000 HUMAN PATIENTS. That's it. The truth is, by the time we mortals get to see a new drug, we're still guinea pigs as far as side effects go. That's the main reason why it takes years for the real side effects of any given drug to become known. It has to be out in the general, much larger, population, before we see the "real" side effects.
Which leads me to Lupron... although the drug has been on the market for quite a while (in comparison), we're still only just starting to see longer term effects. I'm reading about women who suffer from effects years after treatment - and by the same token, I've also read of women who had virtually NO side effects, and the Lupron worked miracles for them

The best thing any of us can do, is research research research. Read what you can about the drug. Seek a second or third opinion, if necessary (funny how we do that for surgery, but not for something that goes directly into our bodies...doh!). Read, read read - and read those Lupron Victim webpages with an open mind, and a large grain of salt

Information is a wonderful thing!

s to all

Unread 06-20-2002, 03:05 PM

Thanks for the additional sites to look at.

I found a few unsettling side affects that were not listed on the LUPRON site.

- Memory Loss (may be permanent)
- Drop in IQ (temporary, but large drop from 130's to 90's)
- Dimming of Vision
- Permanent damage to the pituitary gland.

I was startled to find those claims of these side affects on more than one site, which tends to lend more credibility.

I have a doctor's appointment tomorrow, so we will be able to discuss this then. The original plan was to have the first injection tomorrow, but I think I need more time to do more research.

Thanks for the input. If anyone else has found anymore information, or personal experience, I am interested in knowing about it.
Unread 06-20-2002, 04:42 PM

I was just reading your site and I thought I'd add my doctors input. You didn't mention your age. I just turned 30 and my doc said he wouldn't even dare put me on Lupron because I'm too young to be pushed into meno unnecessarily. He said that since you can only take it for a short period of time and there is no garantee that your fibroids or whatever will even decrease because of it. But he said for me he wouldn't even make it an option. Good luck in your decision. Kerri TAH Sceduled for 7/9/02
Unread 06-20-2002, 07:20 PM

I am 38 years old. Which makes it more difficult for my doc to advise me.

She said if I was 45 it would be an easy choice -- there wouldn't be much useful life left to my ovaries\uterus, but with 12-15 years before I probably would go through menopause, she doesn't want to push hard in either direction. She is leaving the treatment choice up to me.

I have an appointment with her tomorrow, so I will discuss it with her then. But I don't think there will be an injection tomorrow.

Sometimes I wish I had a medical degree so all this research wouldn't be so hard.
Unread 06-21-2002, 05:19 PM

I went to the doctor today, and have made at least one decision. I am going to have a hysterectomy and ovaries removed, then HRT. The doc said I must wait until my colon is 100% healed before she will consider doing the surgery. She will reuse and extend the vertical incision that I had for the bowel resection.

The challenge is to now keep the endometriosis under control until then. I passed on the Lupron shot today. I still need more research. Hubby found more sites last night including information the the FDA has. I think that information is more objective than the lupronvictims or redflags sites that I had visited.

We also asked the doc about her experiences with prescribing Lupron to her patients. She has only had two patients that had to quit the treatment early. One because of bleeding, and I can't remember what the other intolerable side affect was, but it wasn't life threatening or permanent. She said most common side affect was the hot flashes, but if they become horrid that HRT can be used to mitigate them.

For right now, while I am still researching, we are going on continuous birth control pills. It will probably make the fibroids grow, but she is going to watch me carefully.

I am still open to any other information\experiences.


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