So, I have had anovulatory pcos with insulin resistance, obesity, androgens, all that fun stuff. I had a gallbladder flare-up and was sent to a surgeon for possible removal of the pesky thing (which has never given me problems before), only to have the surgeon refer me to an obgyn for possible endometriosis. I had a pelvic ultrasound friday (and horrible cramps afterward) and go in for followup in four days. The doc is talking about doing a laparoscopy regardless of results since my mother had endo, and it was assumed that was what I had until the pcos reared its ugly head! anyway I just wondered if anyone else had similar experiences and what worked for you. Doc also mentioned Lupron, but that sounds horrible and very risky. I want to have a baby in a year or two.
03-12-2013, 12:17 AM
Hi Kittyno! I've also got Endo and PCOS, I had my gallbladder removed at 16 and let me tell you after I had it removed I feel SO much better. My doctor also asked me to do Lupron, but I was afraid of it. The exact words my ob/gyn used to explain Lupron to me was "It will kill your ovaries, but they will come back work again," after she stated her case like that I couldn't risk it, because like you I want children also. I hope you have good luck with your tests, and never be afraid to ask questions, doctor visits add up quickly, get the most bang for your buck by refusing to budge until your questions are answered. It took about 4 different doctors to finally diagnose me with PCOS, if you feel anyway unsure of what your doctor tells you, and you can afford it, never feel bad about going for a second opinion.
03-14-2013, 08:29 PM
Well, I had my laparoscopy three days ago, and endometriosis was found on my ureters. Doc is now looking at Lupron. I'm not sure, but I think it's the way to go since the endo is on my ureters and thus dangers to remove.
03-20-2013, 06:52 PM
Hiya hunny yes I have both aswell Sucks :-( and makes losing weight so so tricky x
03-22-2013, 10:03 AM
No endo experience -- just wanted to let you know I read your post and offer support/encouragement as you navigate this new development in your PCOS journey.
Hang in there!
03-28-2013, 02:20 PM
I have both endo and PCOS - double trouble! It really does suck. I was on lupron in 2010 for 6 months and not to scare you, but I still have side effects left over from lupron. My period is completely gone now and I feel like a 25 year old trapped in the body of a 75 year old. Defintely take the time to research lupron and deciding if you would like to take it. It DID minimize my endo pain, but only for a year. Now my endo pain is back and I no longer have a period. :(
04-02-2013, 07:29 PM
Thanks for the replies, everyone. I have gotten a second opinion from my GP about the whole Lupron experience, and my husband and I have discussed things as well. I have decided to go forward with the Lupron for treatment. It is possible that the Lupron can dissolve some of the endometriosis. Mainly, the largest area of concern would be my kidney function in the future. If I allow this endo to keep growing on my ureters, it would likely cause some kidney complications in the future, and that's not something I want to risk. I will post some updates once I have started treatment so I can share what happens, if (when) I start having side effects.
04-02-2013, 07:40 PM
My situation is totally different from yours but I did read all the posts. :)
If a baby is what you want, find out what you need to do now, now, now.
I was diagnosed with endometrial cancer while trying to conceive my first baby last summer. It's a long story but I wish I had done all of this so many years ago even though I try not to have any regrets. We tried to plan for the perfect time to have a baby and that whole plan went out the window!! We just never know what obstacles we are going to run into.
I have an amazing OB/GYN, an amazing oncologist and an amazing fertility doctor. All 3 are working diligently together to get me this baby I so want badly in my heart. I even asked if I could possibly have 2 and was told to concentrate on the first one now. :)
I wish you lots of luck with your treatments and highly recommend you find out all you can. Knowledge is power!!!!
And I really don't mean to tell you what to do, I just wish I did things differently in my life. :(
04-19-2013, 01:11 PM
I started reading this blog a while back about endo pcos and infertility. I've found it really helpful and informative.
04-19-2013, 01:40 PM
Thank you for that link, 2fat2jump. I feel like I could have written so many of her posts. :(
05-20-2013, 01:31 PM
Well, I had my first Lupron shot 5 days ago, and so far it's not so bad. The only side effect I am having is hot flashes, and those are really rather mild most of the time. I have had a few episodes where I end up in "boob soup" from sweating so much, but it's also been in the mid eighties lately, so that exacerbates things. I know it's only been five days, but this is pretty easy so far. Right when I got the shot, I was very dizzy for about fifteen minutes, but I really cannot tell whether that was from my anxiety over the whole thing, or an actual drug effect. I will update again in awhile to let everyone know how it's going, but I'm happy to say that I have had NO other side effects. I hope this works!
05-28-2013, 12:40 PM
Okay, it's been thirteen days, and I've definitely got a few more side effects. I have had sore nipples that were very painful at first, but they have since gotten much better. I actually started spotting and cramping two days ago, and this morning I woke up with such a thick layer of oil on my face that I could wipe my finger across it and my finger was shiny and covered in oil (eww!). Fortunately, the hot flashes are not as bad as they were last week, but I bought a couple of those little handheld fans from Dollar Tree to keep in my purse, and they really help. I can tell when I have a hot flash coming on, and I just break out the fan.
Despite all these side effects--which I consider to be rather minor thus far--I am not regretting the Lupron shot. My endometriosis on my ureters could potentially cause kidney failure in the future if left untreated, so I think I am doing the right thing. I will continue to update.
06-22-2013, 02:16 PM
Alright, I just got my second shot of Lupron 5 days ago. Honestly, it still isn't so bad. The first few days after the shot, I do notice that I get very angry very easily (mostly at my poor husband), I get insomnia, hot flashes, and I also wake up with so much oil on my face I can wipe it off with my finger and it will be all shiny! Eww! I haven't had any other spotting besides the second week after the first shot thus far.
It's been 5 days since the second shot, and my temper is already back to normal. The hot flashes aren't as bad as the first month, I just seem to be less tolerant of heat nowadays, and that's not a big deal, I've always hated heat!
One thing I have noticed that startles me a bit is the immediate side effect I get upon receiving the shot--I feel like I'm going to faint for about fifteen minutes. The first time I got the shot my husband was with me, so I just leaned on him until we got out to the car. The second shot I got, I was alone, and I was visibly shaking, so the nurse made me stay, lie down, and drink some water while she fanned me with a magazine. I've never liked needles, but this seems to be a physical response. I don't get anxious or anything, I just get very faint! How odd! Now that I know to expect it, I will be prepared, but damn! I have never had this reaction before to a needle. I honestly think it has something to do with the Lupron. It's a little unsettling, but as long as it is temporary, I will put up with it in order to help my endometriosis.
I've noticed an improvement with pain during intercourse. I still have a bit of fear of doing too much for fear of the pain, but I'm not sure how much of that is mental, rather than it being caused by feeilng any physical discomfort. I did have a lot of endo in my cul de sac, so hopefully this means the Lupron is working!!!
I will update again soon!
07-13-2013, 01:24 PM
I am just about ready to get my third shot of Lupron in 2 days. I have noticed that when it gets closer to the time I need a new shot, my symptoms change a bit. My face gets oily again (like, disgustingly oily) and the pain during intercourse gets a little bit worse. I am told this is normal, as it is my body's hormones coming back from being suppressed while the Lupron is wearing off. I have notice a lot of improvement in my pain levels, and I am so happy for that! My hot flashes are pretty much gone, and my heat tolerance has gotten better as well. I still have insomnia a bit the first week after I get my shot, but I am also taking Norco for my TMJ myofascial pain disorder, so I am certain that is part of it. I know everyone's experience is different, but I think this is really working for me. I thought I was going to end up with wrinkles and aging, and brittle bones, etc., and It's really not a bad experience at all, despite the occasional annoying side effect. Those temporary symptoms are worth helping preserve my fertility and my kidney function. You know what's also weird, I have actually seen a reduction in hair growth. My chin used to have one hair that I needed to pluck every few days, and it's been a good few weeks and it hasn't popped up at all. My leg hair is thinner, too. Which is great, because it's usually like straw. I suppose that, since it's suppressing all hormones, it's suppressing the testosterone also. I haven't noticed a change in the hair on my head, which is a giant relief. I was so afraid of that, and nothing has changed in that department. Well, I will update after my shot on Monday if I notice any strange changes. I usually get quite faint after the shot, so I'm sure that will happen again. Knowing to expect it helps, though.
08-04-2013, 08:42 PM
Okay, time for another update. I go for my 4th shot of Lupron on August 13, and i feel awesome. This may be TMI, but I actually had pain-free intercourse for the first time ever. So awesome! Now I know why people like it so much! :-) Anyway, the hot flashes have almost stopped completely, too. I have noticed is that my extra hair (hirsutism) is actually still improving! I have less hair on my chin, the hair that is still there is thinner, and the hair on my legs is even a little less coarse. I am still getting faint upon receiving the shot, but now that I know to expect it, it's not as bad. Lying down while I get the shot helps. Anyway, I really hope this helps someone out there. I was so afraid to get the Lupron shot at first, and I had so many reservations about it. It was hard to tell if it was the right decision, but I felt that I didn't have any choice if I valued my kidney function. Anyway, I'm really glad I did this. The minor side effects have been so worth it. I know it's a drastic treatment, but I don't regret this at all. I really expected to have such a horrible experience that I couldn't finish the therapy, but it's been quite good. Less pain is always good!
04-27-2014, 07:25 PM
Sorry I didn't follow through with updates throughout the whole course of treatment. I ended up getting very busy with work, life, etc., I'm sure you know how that goes. :-)
Anyway, I finished up the Lupron with no problems whatsoever. My doc had me immediately start Lo Loestrin Fe the day after my Lupron course ended. This was to be sure that it would stop the endo from coming back for a long time. It has worked great, and I actually still had not had a period for months. I called the doctor, and he said the birth control pills he put me on quite commonly will make it so one either just lightly spots, or has no period whatsoever (apparently they forgot to tell me that part). I was definitely relieved after that, because I kept expecting to get this horrible period afterward, and nothing kept happening.
I can tell you that after stopping the Lupron for a month, the menopause symptoms had also completely stopped. No more hot flashes, yay! I had heard some horror stories about those staying for years, so I was glad they were gone.
I also had a noticeable decrease in my back pain. I never realized how much of that pain was endo--I thought it was my back muscles this whole time! What a difference.
I wanted to update this thread because I finally did get a period, but sort of due to things out of my control. The company that manages my insurance and benefits through my workplace had royally screwed up my account, and I discovered that they cancelled my insurance by mistake! It took a few months to get it all straightened out. Luckily, I had just gotten 90 day refills on my meds--that is, all but my birth control pills! So, as of today, I have been without them for almost a month, and I have been cramping for a week. I just started a period today (after almost 11 months without one). The good news is that the birth control is in the mail from the pharmacy and should be here tomorrow, but I think I'm gonna let this period run its course before I start the BCP again, just because it is obvious that lining has built up, so I don't want to stop my period before my body is done shedding that lining. I have had a decidual cast before (don't google image that term unless you are not squeamish btw!), and since I'm prone to them, it's something of which I need to be mindful.
Honestly, it's not that bad of a period. The only issue I'm having is COMPLETE AND UTTER EXHAUSTION, which I haven't felt this badly since I was in high school. I slept for 14 hours last night, camped out on the couch today with cramps, and I'm currently fighting sleep after only being awake for 7.5 hours. The cramps aren't awful, but they're definitely worse than I have had in the past several years. However, I've mostly had standard PCOS periods as an adult, which are rather light. When I was younger, I had more typical endo periods (heavy, extremely painful, missing school 2 days a month sort of stuff), so I've been spoiled when it comes to my period throughout most of my twenties.
I still think that this is due to the Lupron and the fact that the first period is usually unpleasant, even though it's been like 6 months since I stopped the Lupron therapy.
Anyway, I just felt like this thread was unfinished without an update, so I thought I would post this just to share the information.
I hope that this information will be helpful to someone out there who is struggling with the decision of whether to take Lupron.
I wouldn't necessarily recommend Lupron to everyone, as it is an extreme form of treatment, but I am determined to have a baby in the next couple of years, and this is what I consider to be the best treatment option for me--everyone is different, so that may not be the decision others make, and that's cool too. If anything significant happens, I'll continue to update.
05-29-2014, 09:49 PM
I have both PCOS and endo. Not sure what stage of either, but my OB-GYN didn't want to do laproscopy yet because I want to try to have more kids. (I had been on BC from 19-22, then missed a few days...and tried to take a bunch at once...and now I have twins. Apparently I regulated my ovulation cycle enough to conceive.) I only found out about the endo because I found a tumor in my abdomen (it was very superficial, just below the skin) and when it came back from pathology, the told me it was endo! I have a high pain tolerance, so I chalked all my pain up to being normal. In retrospect, it all makes sense. Now, how do we deal with both these heinous issues and lose weight?!