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TAH and Lupron - need advice ASAP TAH and Lupron - need advice ASAP

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  #1  
Unread 05-28-2009, 07:16 PM
TAH and Lupron - need advice ASAP

In the next day or two, I need to schedule my TAH. The GYN wants me to take Lupron for the 2 months leading up to surgery. She's hopeful that it will help shrink my uterus and fibroid -- not so that she can go in a different way (it's an enormous cervical fibroid, consuming my entire abdominal cavity -- looks about 20-24 weeks gestation ... it's not good, and its size and location have provided no safe alternative route because it's definitely symptomatic and needs out ASAP).

GYN's concerns are there may be adhesions to the ureter, etc...She thinks that if it shrinks even 1 or 2 cm, it may relieve the ureter, resulting in less complicated surgery (no need for urology consult mid-surgery).

My gut feeling? No to Lupron. I have read and heard so many negative things about Lupron, and I do not feel stable enough now to deal with being completely unstable for 2 months pre-op.

My GYN was sympathetic to my concerns and did not press the Lupron at all. She said she'd still do the surgery, but she wanted me to know there would be increased risks of complications during the surgery. My husband and I feel this implies that the risks are not terrible, as she didn't make it sound like skipping the Lupron would be fatal.

I know Lupron doesn't always work in the way intended. I know it doesn't work the same on every person. I know I can take it one shot at a time.

My feelings of terror over the drug, however, can't be won over by my bladder. Is that terrible?

I need to decide quickly whether I'm willing to take the Lupron or not. 2 months isn't such a long time, but if I'm one of those people who suffers side effects indefinitely, well - that IS a long time...and there's no knowing.

If there were a way to know for sure if there were adhesions, that would make the choice so much easier for me. This has been so hard already in a whirlwind of a few weeks.

Is there anyone else who suffered from massive CERVICAL fibroid, whose only option was TAH, who took the Lupron and saw (or didn't see) results?

Is there anyone who took the Lupron and their doctors found it prevented excessive blood loss? (I am a serious bleeder, and I don't mean menstrually - I mean in general, I just bleed and bleed and don't stop...)

Thanks, ladies!
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  #2  
Unread 05-28-2009, 08:54 PM
Re: TAH and Lupron - need advice ASAP

I wish I had more advice for you but all I can tell you is that I took Lupron (monthly injections) for almost 6 months when I was 17 and then again (daily injections) for 6 months when I was 24. I am now 31 and have not had any negative long term affects from it . I did prefer the daily injections (I did them myself at home) as they were more subtle. I finally decided that I didn't want to fight this with meds anymore and had my LAVH last month. I am very pleased with my decision. I feel so much better already.

No advice can replace your gut instincts though. Just make sure that you aren't allowing fear to influence you. You can find tons of fear to base either choice on......Fear of a difficult procedure if you don't take it and fear of actually taking it. Go with the choice that makes you feel empowered and at peace. That is always that right one. :-)

You will be in my thoughts and prayers.

Best Wishes!
  #3  
Unread 05-28-2009, 11:50 PM
Re: TAH and Lupron - need advice ASAP

I have no experience with fibroids but I can say that I'm also sensitive to medications, I can't take the contraceptive pill without becoming a spotty, moody, bloated, absolute nightmare. I've had the three month Lupron injection and I'm actually feeling better than before it, although I have hot flushes and night sweats they are manageable.

Fear is understandable, I was really scared before the injection and thought I'd turn into a Hormone Hag but the reality has been far better than my imaginings beforehand.

My GYN said that, in her experience, people bleed less on the operating table and have a better recovery and long term prognosis if they take the Lupron. For me it may also mean I don't need my ovaries out so I did have a very good reason for going for it.

What your GYN seems to have said is that if you take it the risk of bladder problems afterwards may be reduced. It's not life or death it's more 'leaking or not leaking afterwards' I guess. Only you can decide if the possible increased chance of permanent bladder problems is worse than the, possibly temporary but in small minority of cases permanent, bone density loss from the GnRH.

What I have found over the last three weeks is that there are no easy decisions, sometimes it feels like I'm ****ed if I do and ****ed if don't with none of my options being attractive. So please have a from someone who also wrestled with the Lupron or not question and chose to go for it.
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  #4  
Unread 05-30-2009, 11:13 AM
Re: TAH and Lupron - need advice ASAP

Thanks for the responses! I called my doctor's office first thing Friday morning, and I heard back from her later in the afternoon, when I was able to ask her all of the questions I had regarding the Lupron and my case. I still hate the idea of taking it, but I'm going to try it, anyway and hope for the best. As I mentioned, I am a serious bleeder, so even if the Lupron does nothing with regard to my fibroid, at the very least it may reduce the amount of blood loss during surgery --- and I really don't want to bleed to death.

Thanks again!
  #5  
Unread 05-30-2009, 05:06 PM
Re: TAH and Lupron - need advice ASAP

I'm finishing up my third month of Lupron in preparation for a TAH on June 10. When I first research Lupron I totally freaked myself out and probably drove my doctor and nurse nuts with all of my questions. I'm happy to admit that it has been nowhere near as bad as anticipated. I do get hot flashes, but they are true flashes, nothing prolonged. I think I've had some of the other symptoms that I read about, but every one I have been able to attribute to something else going on at the time. I feel better than before. Since the Lupron turned out better than anticipated, I'm hoping the TAH does, too!!
  #6  
Unread 06-02-2009, 02:46 PM
Re: TAH and Lupron - need advice ASAP

I had (feels great to say that past tense) a huge cervical fibroid (one week ago), considered inoperable, took Lupron just to save my life while figuring out what to do (this was four months ago). It shrunk quickly, side-effects were annoyances, (hot flashes, night sweats, acne, weight gain) but nothing compared to the massive bleeding I was experiencing. Totally worth it for me and my cervical tumour case. It shrank to exactly half of its former size in three months, and I was able to have it removed without a hysterectomy, to spite what several doctors told me initially.

I was never given the choice as to whether to have Lupron or not, as my doctor at the time was IMO dreadful, but I'm still very glad that I had it. My life was not sustainable pre-shot, and after the shot I was at least able to lead a normal life while waiting to continue a more permanent solution.
  #7  
Unread 06-02-2009, 05:57 PM
Re: TAH and Lupron - need advice ASAP

Yes, lupron can be nasty, but so is giving up your day to day life for the bleeding and pain issues. I have been on lurpon and it has made me able to live a somewhat normal life since January. If it was not for the lupron, I would not have been able to go to work each day. Yes, I still had pain, but I could work through most of it. No let fear make the decision for you. I know it is scary, but the unknown always is. Kris
  #8  
Unread 06-02-2009, 09:06 PM
Re: TAH and Lupron - need advice ASAP

Lupron was initially something I wanted NO part of! I had a Lap. done in the middle of Sept. last year and my GYN at the time found an "average" (still don't know what average means) case of Endo., got rid of all he could see and also repaired a hernia. After my initial 6 weeks of healing/light duty I felt fantabulous and was excited to be pain free....Until Christmas when the pain and cramping took over again. I've never had the issue of heavy periods and until 4 years ago never, ever cramped for more than about day each month.

Went back to the Dr. after Christmas and he told me, point blank, that I needed to get started on Lupron right away to be pain free, with no explanation other than that. I came home to research it and went back to ask questions. I never got a solid answer to any of my questions and was even told that all of the pain meds I'd tried and different BC pills I'd tried, that this pain could very well be in my head. That was all I needed to hear from Dr. #1

I contacted Dr. #2, and had an appt. 3 days later. We sat and visited for about an hour, looking thru my records from Dr. #1 and asked about his take on Lupron. He said he'd recommend trying a single 3-month dose to see how I reacted. If the cramping goes away we know we've found the source of the problem...my ovaries/estrogen making the endo grow. He explained the side effects too and said each person reacts different.

After talking "with" my new doctor, rather than having him talk "at" me I went home, talked with DH, prayed, prayed, prayed I decided to go for it. I never had the night sweats or mood swings...ever. If I had an actual "hot flash" it was so quick I didn't even realize what it was. And above all: NO CRAMPS!! For 2 1/2 months I felt better than I'd felt in 4 years!! My next call to the dr's office was 3 days after they started in again.

I explained how I was feeling, asked what the next step was and was asked to come in to talk about a TAH. I've not had children and never intended to anyway so a LAVH was not a possibility without greater risks.


Sorry...I'm pretty sure that was more detail than you really needed. I wish you well in your decision-making!! It's a big step no matter which way you choose to go. I tried to follow my gut instinct, but after hearing his point of view, I had to go with his knowledge and experience.

Good luck....sending up prayers for all of my new-found Sisters!

Tori
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