What the doctors do not tell us about Lupron and all GNRH

Interesting article ladies;

m.voices.yahoo.com/what-doc...

Best wishes,

Barbara x

[hayls]

Hi Barbara

I've seen this article before, back when I was deciding whether or not to try prostap and I've just re-read it again, 6 months on from my prostap finishing. I think I must have a good gynae as he told me everything, absolutely everything, that this article mentions in advance of me going on prostap and whilst I was having a discussion with him about maybe trying it.

Having now had my prostap course (11 doses) and my system has now kicked back in I think this article covers all bases - it's a temporary treatment option where birth control and/or pain meds don't give enough relief, there are side effects, any longer than 6 months is off licence (not unusual for thousands of prescription drugs to be used off licence), HRT may or may not help with side effects (for me wasn't worth it, only had HRT for 4 weeks and counteracted the prostap), it only pauses endo growth which consequently calms it down but it will kick back up again as soon as the prostaps out of your system and it takes a few months after the course for the side effects to gradually stop.

For me, prostap was wonderful and was a complete saving grace! Before I started it I pretty much couldn't leave the house and was in 24/7 agony and no painkillers including oramorph touched it and hadn't worked properly for months, Once it kicked in and settled down (about 7-8 weeks but flare wasn't really any worse than I already was) I was almost 100% pain free and the side effects were manageable, particularly after a couple of months. I also noticed I got less side effects from the 3 month dose than the 1 month so switched to that after the first few. I stopped bleeding the day of the first injection and didn't bleed again (other than a bit of breakthrough bleeding in 4 weeks I took HRT at 6 months in) until my system kicked back in 4.5 months after the last does expired, all side effects calmed down quickly and gone by 3 months after last dose ran out. Bleeding is reduced quicker if you have the first injection in the first 5 days of your cycle. I also had extensive surgery (2 ops) about 8 months in and the surgeon was able to sort me out a lot more because I'd been on prostap, previously it had been very difficult as my ovaries wouldn't move off my pelvis without serious damage whereas the surgeon managed to free them much easier with everything being calmer due to the prostap - I have a big problem with heavy internal bleeding from endo which is also why surgery has been difficult before whereas there was none this time because of the prostap.

I know everyone is different and will react slightly differently to drugs but generally only those with negative views shout out the most, if it goes well we don't tend to say so much. The only thing you can do is weigh it all up and make an informed decision based on your circumstances and what you are hoping to achieve out of it.

Apologies for very long post!!! xxx

[Hidden in reply to hayls]

Thank you Hayls.

I think if doctors tell you everything about any treatment, us as the patient can make an informed decision. What I'm worried about is the

withholding of all the facts. This is when we google things and scare ourselves!

For me my reluctance to go on GNRH are based on four aspects.

1) I have had my children and as I have adenomyosis, it makes more sense for me to have my uterus taken out and excision of Endo spots.

2) I do not need to use this drug as a diagnostic tool. I know I have Endo. But what I don't know is what pain is caused by my adhesions, Endo or adenomyosis. And to be honest to me it doesn't matter.... I'm in pain!

3) research suggests that GNRH shouldn't be used priory to surgery as it can make Endo invisible and then these aren't operated on. (If my doc decides to offer me surgery after GNRH)

4) I have had clinical depression and I also suffer with severe migraines. Both of these are made worse by any hormones. ( they were dreadful when I was pregnant etc)

I think if I experienced the type and severity of pain you have had, I possibly would have tried them. Yes my pain is awful but with my excellent GP we have formulated an effective pain management plan. I suppose there are the occasional day when I can't manage the pain, so I nest myself in my bed with my tens machine, hot water bottles and my yellow labrador !

Again if my fertility was the issue I would go on them. Infact when we were going throught fertility treatment, I would have done ANYTHING!

Am I making sense or am I being completely irrational?

Lots of love

Barbara x

[hayls in reply to Hidden]

You are being completely rational so don't worry about that! I really really pushed my gynaes (2 of them) about the effectiveness of surgery when on prostap as I really didnt want them to miss anything! The surgeon I went with in the end said it completely depends on how your endo has developed and the type of surgery you are having, but yes that is a risk, mine has been concentrated in patches which turn purple whilst on prostap so it was still very obvious and i had a lot of the lining of my peritoneum stripped so seen and unseen endo removed.

Re. adhesion pain, have you managed to track down any research that backs up the theory that continued pain whilst on prostap is most likely adhesions. I think thats the only reason i would try it if i were you and I would probably refuse it if i couldn't find good enough evidence to support that. Mainly as my mum had/has endo and so far 40 years of gynae surgery, she had hysterectomy straight after children but still has so many issues due to adhesions and multiple surgeries. She recently had another big op but adhesion pain is still a big big problem and looks like all the pain is from that, the only thing that helps her is Pilates.

[Hidden in reply to hayls]

Funnily enough I have just got a Pilates DVD !

Have a great weekend

X

[Mommy2 in reply to Hidden]

Hi Barbara, I hope you're still on this site as I see your reply was 2 years ago. I also suffer from migraines and depression and am considering the Lupron injection. Did you take Lupron? If so, did you have any side effects? Thank you.

[Mommy2]

Do you have an updated link to this article? I can't view it. Thank you!