Lupron/Endo Question (+reintro)

sparedream

Hi all!  It's so exciting to jump back in here.  I used to be a member of this board about two years ago for the year my ex-husband and I were trying to get pregnant.  When the year mark was up and we did testing, we found out he was infertile, and he gave up on our marriage.  It was tough (understatement), but I am so thankful for everything that happened as I have now met the most amazing man and am happier than I could have ever imagined.  Life is good.  This board has been my go-to source of internet entertainment, and I've been a longtime lurker ever since I stopped posting.  I missed the awesome friendships I made here.  Plus, I just can't keep myself away from a good UO or FFFC.

Anyways, on to my question.  I know this may be a bit better suited for TTTC, but I'm hoping to join back into this community so I thought I'd give it a shot here first.  We've been discussing starting a family, but the timeline has jumped forward a bit with my recent endometriosis diagnosis.  I had a lap the beginning of this month, and most of it was removed, but now I'm trying to develop a treatment plan going forward.  Because of the severity of the endo that was found, my doctor is heavily recommending lupron, but the side effects are terrifying me.  When I asked about other options, he said "well, you aren't planning on getting pregnant any time soon, are you?"  I know endo clears up with pregnancy, and he said apparently for a lot of patients it doesn't come back (or come back as bad) after a first pregnancy.  So, it's been something we've been heavily discussing. 

Obviously, I'm not asking anyone to help me with that personal decision.  Mostly I just wanted to reintroduce myself, but on the chance ladies here have been in a similar situation, the two questions I have:

1.  If you have taken lupron before for endo, how did your body handle the side effects?  

2.  If you have children and endo, did it return after your pregnancy?

Thanks!  

ETA:  I wasn't very memorable, but I forgot to add my old name was Enchanted616 for those who have been around a looooong time.

barackollama

1. Lupron was horrible! I hated every second I was on it. I had mood swings, hot flashes, forgetfulness, and zero sex drive. The side effects lasted months after my last dose should have left. I regretted doing it.

2. My endo improved quite a bit before pregnancy from the surgery and Lupron. However it did still come back. It's still not as bad as it was initially, but I can definitely tell it's back.

sparedream

PrincessPetunias said:

1. Lupron was horrible! I hated every second I was on it. I had mood swings, hot flashes, forgetfulness, and zero sex drive. The side effects lasted months after my last dose should have left. I regretted doing it. 

Eek, that's what I'm scared of.  My doctor said if it is really bad, I could come in and get "add back" shots of estrogen.  Did you try that at all?

barackollama

No, my ob didn't mention that as an option. She also blew off most of my concerns which led me to change providers.

ayo82

Hi there! Welcome back to the board.
I think I can help answer at least one of your questions. I don't have any kids and am in my 3rd cycle now and I have Stage 4 Endo. Unfortunately, there really is no cure for endo except a hysterectomy. Pregnancy, Lupron and BCP treat it by pausing it as it can only grow when having a period.

I was DX 5 years through emergency surgery. After surgery I did 9 months of Lupron shots. I didn't have any side effects except some heavy spotting in the middle of treatment. I also took daily supplemental hormones to keep everything balanced since Lupron puts everything on hold including any hormone production in your body. Honestly, did feel amazing on it. No pain, no periods. After the hell I went through it was a huge relief and that alone outweighed the risks for me.

Please take into account that everyone reacts differently and you could get some side effects or none at all. If you choose to go the lupron route, I highly suggest you start taking a calcium vitamin as one drawback to Lupron is a higher risk for osteoporosis in advanced age.

I hope this helps and sorry it's so long. I've been trying to get a siggy made with my history details but I'm always mobile.

Eta: fixing words

carolinagirl67

Can't really help with the questions. Just wanted to say welcome!

xhochixx

I HATED LUPRON!!! I was on it for six months and took add back therapy as well.. I didn't do Lupron after my last surgery and ended up not conceiving so this last surgery I had was in October of last year. 6 months of Lupron and six months TTC off of Lupron.. Just waiting now... I had horrible hot flashes, nausea, night sweats achy all over, gained a ton of weight, swelling, mood swings like crazy and the WORST migraines! I wish I would have just TTC straight after surgery this last time. Stupid ENDO!!

MrsC0617

How old were all of you when you were diagnosed with endo? I've been getting pelvic pain during the TWW the last few months and I'm getting worried. Not trying to borrow trouble but I'm trying to figure some stuff out.

SND1231

Sorry no help on the meds.. but welcome.. I do know a lot of ladies that are on it on TTTC and I think even have seen a few on the IVF boards.. Good luck and welcome!

katietopaz

I'm lurking but thought I would share my experience. I was non-surgically diagnosed with endo 6 years ago, they didn't give me a stage diagnosis at the time. They tried to treat with BC initially but it wasn't effective. So my doctor had me do 6 months of Lupron. I have mixed feelings about it--the side effects were pretty wild, but it did clear everything up and let me maintain the endo (as far as I know) with BC after.

Side effects-wise, I had crazy hot flashes, especially at night. I also put on 40 pounds in the first 3 months. I don't know how much of my moodiness was due to college stress and how much was because of the Lupron.

I don't know if or how much my endo affected my ability to get pregnant - it took us a year. But I do know that the Lupron helped take care of clearing it up at the time.

Good luck with making this personal decision, there's definitely a lot to consider.

pmcd886

I have no advice, but wanted to say welcome back!

barackollama

MrsC0617 said:

How old were all of you when you were diagnosed with endo? I've been getting pelvic pain during the TWW the last few months and I'm getting worried. Not trying to borrow trouble but I'm trying to figure some stuff out.

I was 27

ayo82

@MrsC0617‌ I was 27. Are your periods extremely painful as well?

MrsC0617

@ayo82‌ No, my periods aren't extremely painful. When I google symptoms, the one that really sticks out for me is the pelvic pain after ovulation. I guess that can be anything. In the months since I've been TTC, I've self-diagnosed myself with every possible disease that prevents pregnancy. I guess I'll just have to wait it out until I hit the one year mark and then get some answers. Thanks for sharing.

anfranklin2

Don't have anything to contribute to your questions but wanted to say welcome and good luck!