Re: First Lupron injection for endometriosis 3 days ago and feelin' fine - NOT ANYMORE - NEW QUESTIONS
From: Nicole (anonymous@obgyn.net)
Fri May 30 10:33:43 2008
Hi Jen,
Somewhere in the confusion of all these posts I think we may have gotten
mixed up. I also have been on lupron prior. It was an awful experience
I would never do it again. I am 25 now, and I was 23 at the time I
tried it. I was actually explaining all this to another person (at
least I was trying or thought I was.)
I am doing great with the treatment of my IC. I have a combination of 6
medications I take throughout the day that make all the difference in
the world. My doctor is slowly taking me off them as I have started to
heal. I am hoping that another 3 months I will be to the point I am
only taking one medication. Food and drinks still completely dominate
how I feel. I will never be able to do caffeine again. I have been
told to avoid cranberry all together for now, but I will sure ask about
those the next time I am at the doctor. I have heard about them before.
Are they considering another surgery for you? How long has it been since
your last one?
At Thu, 29 May 2008, Jen wrote:
>
>Nicole, I've tried everything for treating endo, lupron, 3 birth control
>pills a day, etc. etc. Being on Lupron was the WORST experience of my
>life. I'm so sorry to put that so bluntly, but I was so miserable. I
>literally knew what menopause was like at 23. The bad part is that you
>have to have 3 shots, (at least that is what I was told.) I had no sex
>drive, woke up in a sweat, cold, hot flashes, moody.
>
>I also have IC. I have read most of this, but may have overlooked
>cranberry pills that you can buy at cvs. Those helped me. I was
>diagnosed with IC by a great doctor in BOston, Brigham and Women's. The
>procedure was a cystoscopy with urethral dialation. I too had the
>feeling of uti's about 3 times a week and was miserable. I don't know
>if it was the combo of the removal of endo on the bladder or the
>surgery, but I have been better. I also have the endo on my bladder.
>Now, I have a new doctor and reading these surgery notes, I am FREAKED
>OUT, I'm posting another blog on here, feel free to contact me with any
>quesions at all!!
>
>At Tue, 27 May 2008, Nicole wrote:
>>
>>With my IC pain, it started out as a come and go problem. I didn't even
>>realize at first that it was my bladder. I just assumed it was the endo
>>pain. Then, as my bladder got worse, so did the pain. It became
>>constant all the time. It got so bad I went weeks without sleep. I
>>would be up every hour feeling like I had to pee but never did really
>>have to go. Finally I went back to my OBGYN demanding they do
>>something. They got me into a urologist and sure enough it was the IC.
>>
>>If you have a lap scheduled anytime in the near future you can ask them
>>to do a cystoscopy on your bladder at the same time. Just be sure and
>>ask for it.
>>
>>On a positive note, I have been on treatment for the IC for almost 6
>>months now. I am feeling like a new person.
>>
>>A good place to start is looking at http://www.ichelp.org. Diet has made all
>>the difference in the world when it comes to pain. You might try
>>cutting things out and see if it makes a difference for you.
>>
>>Here's a List to avoid:
>>
>>-Milk Products such as aged cheeses, sour cream, yogurt and chocolate.
>>-Vegetables such as fava beans, lima beans, onions, tofu, soy beans and
>>tomatoes.
>>-Fruits such as apples, apricots, avocados, bananas, cantaloupes, citrus
>>fruits, cranberries, grapes, nectarines, peaches, pineapples, plums,
>>pomegranates, rhubarb, strawberries and juices made from these fruits.
>>-Carbohydrates and Grains such as rye and sourdough bread.
>>-Meats and Fish such as aged, canned, cured, processed or smoked meats
>>and fish, anchovies, caviar, chicken livers, corned beef, and meats
>>which contain nitrates or nitrites.
>>Nuts.
>>-Beverages such as beer, wine, liquor, sodas, coffee, tea, cranberry
>>juice.
>>-Seasonings such as mayonnaise, ketchup, mustard, salsa, miso, spicy
>>foods (especially such ethnic foods as Chinese, Indian, Mexican and
>>Thai), soy sauce, salad dressing and vinegar.
>>-Preservatives and Additives such as benzol alcohol, citric acid,
>>monosodium glutamate (MSG), aspartame (Nutrasweet), saccharine, foods
>>containing preservatives and artificial ingredients and colors.
>>-Miscellaneous Items such as tobacco, caffeine, diet pills, junk foods,
>>recreational drugs, cold and allergy medications containing ephedrine or
>>pseudoephedrine, and certain vitamins.
>>
>>I know this list is long, but it really does work. I avoided having to
>>go on the strong drug called Elmiron. My urologist does not use this
>>drug to treat IC.
>>
>>Please feel free to email me with any questions. I know I just typed a
>>book. I just hate to see someone get IC as bad as I had it before
>>getting treatment.
>>
>>This goes for anyone out there who has ever had that feeling of a
>>bladder infection, but nothing comes back when they test for it. If you
>>have endo, your chance of having IC is extremely high.
>>
>>Take care and feel better!
>>
>>At Fri, 23 May 2008, endoquestions wrote:
>>>
>>>Nicole, thank your for your insight. Never would have considered IC.
>>>Can you tell me if pain with that comes and goes or if it is constant?
>>>Today, that specific area of pain seems to have eased off. In fact,
>>>whole low, low pelvic/bottom area seems better today. I'm gonna freak
>>>out if there's something else going on I have to deal with. Have a
>>>great weekend, everyone!
>>>
>>>At Thu, 22 May 2008, Nicole wrote:
>>>>
>>>>I noticed that you said something about thinking you had a bladder
>>>>infection, but it didn't show up. Get to a Urologist ASAP. Check to
>>>>make sure you do not have IC. Lupron will not cure this condition, and
>>>>it will only get worse over time. It is the evil twin of Endo. I let
>>>>my thought of a bladder infection pass me by and I ended up in horrible
>>>>pain from the IC. Worse than the endo. Alot of patients dont realize
>>>>it could be something other than the endo causing the pain down there.
>>>>
>>>>I was on lupron before and my symptoms only got worse. I stopped after
>>>>my 3rd injection. Hope you have better luck.
>>>>
>>>>Wishing you the best! feel better :)
>>>>
>>>>At Thu, 22 May 2008, endoquestions wrote:
>>>>>
>>>>>Well, as I noted before, not more than a few hours after my original
>>>>>post, it was quite apparent I hadn't gotten lucky. Pain, pain, pain. It
>>>>>has gotten better (now three weeks after first injection) but still have
>>>>>some disturbing pain that, to tell you the truth, is still worse than
>>>>>originally (with just the endo.). However, some of the other pains seem
>>>>>to have improved (keeping my fingers crossed and knocking on wood!).
>>>>>Still incredibly painful and worrisome. I've had this sharp pain in the
>>>>>center of my low abdomen (about where uterus used to be). It shoots
>>>>>through to vagina area. I thought it may have been a bladder infection
>>>>>but had GP check it - nope. Hmmm.
>>>>>
>>>>>I was concerned about starting the "add back" because I heard that's
>>>>>what REALLY packs the pounds on. In fact, I didn't even take it for the
>>>>>first week. However, 2 weeks after finally starting that AND with the
>>>>>Lupron in my system, I'm losing weight. Yes, I know that could all
>>>>>change and I could start an upturn at any moment. Knowing that this
>>>>>whole situation could cause a weight gain (and I have ALWAYS gained
>>>>>weight on birth control pills, Norplant, and depo Prover), I took this
>>>>>as an opportunity to REALLY watch what I'm eating and drinking and being
>>>>>VERY careful.
>>>>>
>>>>>I have noticed what have to be side effects of the Lupron (not
>>>>>considering the increased/different pain a side effect). Funny metallic
>>>>>taste in my mouth - seems to originate directly from the middle of my
>>>>>tongue. Cokes don't even taste right to me now (which, I suppose, is a
>>>>>good thing because that means I'll have to drink water). Sharp,
>>>>>stabbing, feels like my AC joint in my shoulder area is breaking when I
>>>>>move my left arm. That had never happened before the Lupron shot. My
>>>>>jaw on the right side sometimes feels like it's going to pop out of
>>>>>joint - literally makes a noise. Yes, I've considered TMJ problems, but
>>>>>this had NEVER happened before the Lupron shot. Dizzy sometimes. You're
>>>>>right, too, eyesight seems a little off. I was supposed to get bifocals
>>>>>a few months ago (before Lupron). I'll be able to get my new glasses in
>>>>>a couple of weeks (when I can finally afford them!). I wonder if I
>>>>>should have my eyes checked again (just had that done in February, I
>>>>>think - yes, the memory is going on the Lupron!!!). Maybe the
>>>>>optometrist could tell me if the Lupron (even only at about 4 weeks post
>>>>>injection) has affected my eyesight. That might be a fun test. And,
>>>>>yes, the memory is an issue. It was before Lupron, but not quite this
>>>>>bad. I was standing at the deli counter the other day and couldn't even
>>>>>figure out that I could read the label on the meat I wanted to tell the
>>>>>deli person what to get for me. I had to apologize to her as I stood
>>>>>there looking like an idiot about to cry because I couldn't think to
>>>>>read the label. Duh!!!! Have noticed a few headaches but I can't tell
>>>>>if it's the Lupron or allergies. The headache seems to be all in my
>>>>>forehead area. Sound Lupron-y to you? Acne is bad. Have noticed whole
>>>>>strands of hair coming out of my head. Hands are incredibly dried out
>>>>>(palms are peeling!). Nails are EXTREMELY brittle. Chunks just crack
>>>>>off the ends. I ALWAYS use lotion but it doesn't help anymore.
>>>>>
>>>>>At 3.5 weeks post first shot, would I be having the hot flashes yet? I
>>>>>think I may have noticed a few but then again it could be just that I'm
>>>>>fat and was overworking myself. Even if it is hot flashes, I figure
>>>>>maybe that'll burn off a few calories!!! :)
>>>>>
>>>>>All-in-all, at this point, I'd have to say things are better than before
>>>>>Lupron/add back. Pain in some areas is much better. (Yes, pain in some
>>>>>areas is worse.) Maybe the pain issue seems more tolerable because I
>>>>>have pain meds to get through it, too. Side effects aren't unbearable
>>>>>(yet). And, yes, I realize that all the side effects may just get worse
>>>>>over time and that new ones may pop up.
>>>>>
>>>>>Thank you so much for YOUR insight. Your advice is appreciated. How
>>>>>long were you on Lupron? Did you do the 11.25?
>>>>>
>>>>>At Thu, 22 May 2008, stacey wrote:
>>>>>>
>>>>>>i thought i was in the same pool, give it three months. not only will
>>>>>>the hotflashes be totally annoying at this point but the headaches will
>>>>>>get worst. the first 10lbs you will gain seem like nothing, but now it
>>>>>>will be like a pound a week until you are done with the treatment. i
>>>>>>wouldn't finish the treatment if i were you. when you are done your
>>>>>>vision will never be the same, your memory won't come back and the fat
>>>>>>on you belly will join you for the rest of your life (just like real
>>>>>>menopause). woo hoo! lupron sux!
>>>>>>
>>>>>>At Fri, 9 May 2008, anonymous wrote:
>>>>>>>
>>>>>>>I had my first Lupron 11.25 injection three days ago. If I was going to
>>>>>>>have the nasty endo. surge I've read about (increased pain), would it
>>>>>>>have happened by now? I woke up the second night and had a little bit of
>>>>>>>pain but nothing like usual my usual endo pain. What I HAVE noticed are
>>>>>>>the usual bowel issues (diarrhea, having to run to the potty) that
>>>>>>>normally come during menstruation time. Have I just gotten lucky? At
>>>>>>>this point, I don't feel like I had ANY kind of medicine put in my body
>>>>>>>a few days ago. In fact, I feel better. Maybe my remaining endo. is
>>>>>>>more bowel-related??????
>>>>>>>
>>>>>>>I had a LAVH a couple of months ago but left one ovary hoping to avoid
>>>>>>>menopause because of my age. After the LAVH, I've still had a cyst on
>>>>>>>the remaining ovary and MISERABLE times during what would have been my
>>>>>>>period times (back pain, pelvic pain/cramping, joint pain, bloating)
>>>>>>>leading my dr. to think she may not have seen/gotten all of the endo.
>>>>>>>That's the reason for the Lupron.
>>>>>>>
>>>>>>>I guess my real test will be during what would have been period time for
>>>>>>>me this month. I'll have to see if the misery is there.
>>>>>>>
>>>>>>>Thanks for any ideas.
>
>--
>Jennifer
>Greater Boston Chapter President of the Endometriosis Assn.
>GreaterBoston_Endo@yahoo.com
>
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