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Re: First Lupron injection for endometriosis 3 days ago and feelin' fine - NOT ANYMORE - NEW QUESTIONS
From: Jen (anonymous@obgyn.net)
Thu May 29 16:45:17 2008
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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