Has anyone used Lupron?

[Rachels]

It has been recommended to me, and I'm feeling pretty skittish about it. I have a history of endometriosis and have been having some trouble lately. I'm sort of weighing my various options at this point and just looking for some input on what this drug is really like.

-Rachel
Mom to Abigail Rose
5/18/02


"When you know better, you do better."
Maya Angelou

http://www.gynosaur.com/assets/ribbons/ribbon_sapphire_24m.gif Two years and counting!

[momtoemma]

Rachel,

I'm sorry you are going through this! I was also diagnosed with endometriosis a few years back after surgery to remove a tubal pregnancy. My doctor at the time said that if I continued to have trouble, we should try the Lupron. I did some research at the time and really didn't like what I read about it. Then, my doctor retired, I got pregnant with DD#1 and I had to switch docs. The new doc just frowned and told me he was glad I hadn't gone on Lupron but never really provided any reason. I know I'm not much help, and I'm sure you will research all your options. Hopefully some other gals from the boards will be more helpful.

[heatherlynn]

I used it when going through IVF. I'll tell you, that stuff made me into a raging witch. Plus, it gave me headaches. Thank God we only needed 1 cycle of IVF, but since we're going to try again in the spring, I just dread the thought of using that stuff again. But, it may not bother you. You could try it and see. You can always stop.

Good luck.

H-
Heather
dd 3/98
ds 8/04

[cinrein]

Rachel,
I'm sorry you are going through this. I used Lupon with IVF. I had no symptoms with it at all, other than an occasional headache which I can't say was actually caused by the Lupron. The shots are very easy to do. I normally don't suffer any terrible side effects from drugs---not sure if some people do to just about anything they take and some lucky ducks like me don't. Unfortunately my ovaries were oversupressed by the Lupron, which was not the outcome I was hoping for.

Cindy and Anna February 2003

[heidis2girls]

Rachel, I've used Lupron for endometriosis. I was diagnosed with severe stage 4 endometriosis in April of 98. I had a laporoscopy (sp?) and the doctor removed some with the laser but he wanted to put me on Lupron to try to get rid of the rest. I was 33 years old and had been married for 6 months and we were trying to conceive. I had two shots of lupron, each 3 months apart. I'm sure you know the basics, that it basically puts you into menopause, etc., which is how is helps to get rid of the remaining endometriosis.

I had reservations also but didn't have much choice. My mom also had endometriosis and had a hysterectomy at 33. I had just married and we really wanted children. I did the lupron for 6 months and my period returned within a month or so of stopping.

My doctor sent me to a fertility clinic as soon as I was off the lupron because of my history. The plan was to start IVF treatment immediately. I was going through the testing phase the cycle before starting IVF and they told me that I was going to ovulate next Wednesday. DH was scheduled to go on a business trip and I told him that he couldn't go, that this was our last chance before IVF and it worked! I got pregnant with Hannah! We were so happy! When Hannah was 8 months old my OB told me that I should try to get pregnant again because the endometriosis was just going to come back and I was 35 by then. Even though I exclusively breastfed Hannah and Sarah my period came back when they were both 3 months old. Talk about bad luck! I did get pregnant the first try but miscarried. I got pregnant a few months later and Sarah was born.

I haven't had any problems with the endometriosis since having the children that I know of, but even before my surgery I never had painful or very heavy periods so the diagnosis was a bit of a surprise. I had a very large painful cyst which had to be removed which was the only reason the diagnosis was made at that time. I did have a cyst burst a few months ago, but that wasn't necessarily from the endometriosis.

I didn't have big problems on the lupron. The only things that bothered me were dryness (sorry if TMI) and my reactions to things were very different! I was normally a very calm person but I would react very strongly to things while on lupron. I was telling my friends and DH off all the time! The first couple of times they were shocked, as was I, but then we started laughing about it. It was like really, really bad PMS. Actually it was rather freeing, saying exactly what I felt rather than holding it in! I felt like I was in a Seinfeld episode where they just say anything they want. Fortunately, that passed when I went off the lupron and DH and I are still married and I didn't lose any friends!

A couple of other things that I did in conjunction with the lupron was accupuncture and eating a vegan diet and taking lots of different herbs and vitamins. I was working with a nutritionist at the time. It's hard to say if any of that helped, but it didn't hurt.

Sorry this got so long, I just wanted to tell you my story. Let me know if you have any questions and good luck with your decision! I know it's a difficult one.

[sbjf]

Rachel, I'm sorry that you have to deal with endometriosis, I had/have that, too. I had stage 3 endo and it was removed via a laparoscopy, have you had a lap yet? You don't have to answer if you are uncomfortable, I'm just curious. I recommend getting a lap to get rid of the endo personally, or as much of it as you can.

I was never on lupron but it is really common in ivf protocol I think. I have heard of it referred to as 'Loony Lupron', so I think a couple of the women here probably had common reactions to it themselves based on their posts. My feeling is hey, if it can really work I'd give it a try, I'd try just about anything to get pg when I was undergoing treatments.

[Rachels]

I've had several laps-- one to doagnose and treat the endo many years ago, and one for an appendectomy about five years ago, during which they also scouted around for endo and found none. I got pregnant easily with Abigail-- about four months. My doc doesn't want to do a lap unless I clearly have problems conceiving, and I'm on board with that given how good everything looked last time. I will do it if the pain worsens or we can't conceive, though.

Very nervewracking, I tell you. I'd like to feel better without scary medication, though.

Did any of you with endo have trouble with headaches? I've had them terribly for a few months and have twice needed to go to the ER. I know they're hormonally triggered, but they're often simply debilitating.

-Rachel
Mom to Abigail Rose
5/18/02


"When you know better, you do better."
Maya Angelou

http://www.gynosaur.com/assets/ribbons/ribbon_sapphire_24m.gif Two years and counting!

[sbjf]

I think that if Lupron were that bad (meaning does crazy stuff to your moods, reactions, etc.) then it wouldn't be so popular and/or at the very least so many women who take it cycle after cycle wouldn't continue like they do. It is very standard medication.

So right now you don't know if the endo is back for sure? Or if it is you don't really know to what extent right? Are you thinking it's back due to the headaches and other usual endo symptoms or are you thinking it's back because you haven't conceived yet and/or your cycles are acting weird?

I'm asking because my friend Emilie was diagnosed with severe endo a while back, but how she was diagnosed I don't know since she NEVER had a lap. Can you believe that an RE (in South Florida) told her that since her endo was so bad she'd have to go straight to ivf to conceive? Without even doing a lap for diagosis or possible treatment first! Anyway, she went ahead and did ivf and got pg, then when that baby was 6m she did ivf again and got pg again, then she wanted a third, tried for awhile on their own, nothing. Did ivf again, conceived but m/c'd at 6w. The next cycle they just tried on their own and wound up pg (she's due 3 days after me). All she was taking was Metformin to treat her pcos (which she had never been on before and had only begun taking about 3 or 4 months prior to this conception). Imagine? So, I guess my point is that I suggest really analyzing your symptoms and chart your cycles if you can (let me know if you need info on that) because sometimes that can tell you valuable information, too. Me personally, I wasn't conceiving without that lap, even on the met (though I was ovulating regularly). The only reason I got pg this time on my own was because that initial lap combined with my first pregnancy kept the endo at bay I think.

Ok, I rambled! Good luck, I'm thinking of you!

[Rachels]

No, no, I appreciate it. I have had endo for 16 years, so I just know my body pretty well at this point, and this rings true for me. I have had flukey cycles for about eight or nine months now, and a few months ago was hospitalized for a rather sizable cyst which ruptured and caused internal bleeding. The headaches got really bad after that, and I just don't think I've returned to normal. Lately I have been having some pain and nausea. I haven't been charting but know a great deal about it and so am watchful and aware of fertility signs, cycle lengths, etc. I also feel it when I ovulate.

I'm definitely willing to have another lap if I have trouble TTC, but just am not feeling that it's worth it as a first step since we already have a diagnosis but with no history of IF. The trick for me now is trying to decide about TTC vs more aggressive endo treatment, and I'm not sure what exactly I want to do. I do know that I'm going to start acupuncture, which I've done before and which works wonders, and of course I'm researching like a fiend. And I'm sort of counting on that "more will be revealed" idea in figuring out what my next step should be.

-Rachel
Mom to Abigail Rose
5/18/02


"When you know better, you do better."
Maya Angelou

http://www.gynosaur.com/assets/ribbons/ribbon_sapphire_24m.gif Two years and counting!

[aliceinwonderland]

no clue on any of this, but I just wanted to send some positive thoughts. You have been through a lot lately: Dh sick, then the cyst, now the headaches...I do hope you get some resolution soon!!
(and I wish I was in Boston so we could go for coffee. Well, I just wish I was in Boston, period) ;)

[heidis2girls]

Rachel, I haven't had any headaches like you have had. I get headaches a lot (they also run in my family), but it's never been bad enough to go to the ER. Although I did have some bad ones this summer during my periods. It happened two or three months in a row and then they went away. They were definitely hormonally triggered but I don't know if it was from the endo or just from my period.

BTW, I'm in Massachusetts too, in Andover. My OB is in Winchester and is also a surgeon who did my lap at Winchester Hospital (that is also where I gave birth to my girls) and I briefly went to the Fertility Center in Reading until I got pregnant with Hannah.

Keep us posted and let me know if there is anything I can do!

[Rachels]

Heidi, thank you! I'm getting care at Newton-Wellesley, which I love, but things are all spread out-- neurologist at NEMC, birth center midwives, OB/Gyn treating the endo, pcp totally out of the loop. It's crazy. I hope that the headaches will stop, though. They're so brutal I can't believe it.

-Rachel
Mom to Abigail Rose
5/18/02


"When you know better, you do better."
Maya Angelou

http://www.gynosaur.com/assets/ribbons/ribbon_sapphire_24m.gif Two years and counting!

[pixelprincess]

Rachael,
I had a lap and a myometcomy that diagnosed stage 4 Endo and fibroids after years of IF. I know Lupron is recommended by docs for Endo. I did an IVF cycle right after my lap, and it wasn't recommended by my surgeon. I Have you checked this website? It has some good info on Endo...http://www.endofacts.com/treatment/therapy/

I did the Lupron protocol for my two of the three IVF cycles, and I hated being on the med. I had awful headaches and hated the shots. The shots being subQ are a lot easier than the IM ones, but still no picnic. Luckily, I did the Microflare protocol, so did the nasty Lupron shots for only 12 days or so. But course, I'd do it over again for our little miracle.

I found an Endo list which was an amazing resource. My RE recommended a lap and a surgeon that was fairly controversial. Thanks to the internet, I found all kinds on info on him and panicked. I had a choice of two top-notch docs, and was able to find get recommendations on the list for him to put my fears at bay.

I can see your dilemma about having another lap. The more surgery you have the more adhesions you end up with, and since you don't have IF issues you may not need to go that route. Have you gotten a second opinion about your treatment? I am a big fan of second or third opinions (though, it can be confusing at times). Not sure where you are at, or I'd recommend my doc.

Bonnie, It is pretty common for RE's to recommend IVF without doing a lap. My RE suspected Endo without a lap, though it was diagnosed in certainty after my lap (after a failed cycle).

Good luck.

[icunurse]

After a laparascopy, I was diagnosed with Stage 3 endometriosis. My doc spent hours "cleaning me out", but he wanted to try and get rid of the tiny endo that the naked eye couldn't see. So, I started on monthly injections for 3 (maybe it was 4) months. The first month, I had a constant headache. Rarely bad, but annoying enough to notice and for me to question if I should give myself the next monthly shot. With the second month, the headaches went away, but I was definitely in menopause (lots of hotflashes, loss of some libido). I finished the doses and when I had another lap over a year later, my doc saw "three tiny little spots" which isn't bad considering that I was taking infertility meds which feed the endo. Side note....I also took small doses of Lupron during my fertility attempts and never noticed any side effects.....probably too small of a dose. You do need to keep in mind that Lupron can only be used a certain amount of time, as it increases bone loss.
Traci
~Connor's Mom~