lupron question

[holles]

how many of us here developed IC while on lupron depot?

my dh just took a plane ride with a retired ob/gyn. she had never prescribed lupron to her endo patients because she believed it didn't work (didn't work for me: i still had endo in a lap right after lupron). but she did tell him she had heard of many women who developed IC while on lupron. just wondering if anyone else here had that happen.

i'm glad he met her. he finally listened to someone talk about endo and IC. i don't know what got them talking about it --she probably asked if we had kids or wanted to know why we didn't have them-- but i'm glad he met her. and i'm glad he listened and told me all about it when i picked him up at the airport. he wins husband of the day award. ;)

[painfree4me]

I didn't take it, by my urogynocologist said it is an IC patient's worst nightmare. It puts your body into a menopausal state, so the hormones are so low it causes lots of vaginal dryness and discomfort. I know IC has a lot to do with hormones, b/c I had absolutely no flares during either of my pregnancies after about 6-9 weeks. My Dr said that the bladder loves estrogen and also there is much more vaginal wetness during pregnancy which guards against pain. When I am not pg. my hormones are messed up, and I have had a tremendous amount of relief from using estrace vaginal cream twice a day, just a toothpaste amount. I use it every day of the month. If I have IC symptoms now it is almost always right before my period, so I have to be really careful at that time to watch my diet and stuff. I also have endometriosis. I use natural progesterone cream to manage it. I have found that any other birth control pills keep my body running too low on hormones and I have more flares if I try to take them. I had a lap in '01 to remove the endo just before concieving my 1st baby, but since then I haven't used any birth control and I feel better than ever. I was afraid the endo would come back after she was born and we wouldn't concieve again (it took us 2.5 years the first time.) But, We got pg on our own when she was 1 1/2 and my endo symptoms hadn't returned like before. I really think part of what helped me was the cream...it helped with symptoms and with conceiving again. This was probably way to much info, just trying to give back b/c I have been given so much great advice!

[callie0767]

how interesting. i am just starting the endo nightmare. diagnosed in nov and still have severe pain. also had endo on my bladder. she advised the lupron but it caused a major flare. i took it againist my better judgement but am thinking about not taking the second one. just went back to gyn yesterday due to pain but she insists that the endo is not causing the pain because the lupron i took in november killed all the remainig endo but i have my doubts. still have pain and also pain in my leg but she refused to give me anything for pain so i am frustrated and confused. by the way she insisted that the lupron would not cause a problem for my bladder but boy was she wrong . she doesn't know enough about ic .any suggestions in how to deal with this besides get a new doctor which i may do also

[painfree4me]

i know you said "besides, get a new dr," but your dr. is very important. you need to look for a urogynocologist. they specialize in both urology and gynocology and know how it is interrelated. also, ask them if they specialize in IC and pelvic pain. you dr. scares me b/c lupron doesn't kill endo. all it does is suppress ovulation so that it won't grow as fast. it can't be killed, only removed with laser or surgery. i am telling you, progesterone cream and vitex have really regulated my cycles and I feel like the endo isn't growing either. i used to have severe pms and period pain, and i hardly notice my period anymore. hope this is helpful. i went to the wrong drs for years and got really bad advice. it wasn't until i read dr. gillespie's "you don't have to live with cystitis" that i took control of my health. you have to be your own advocate. drs don't have to live in your skin and when you leave their office, they are on to the next patient and not researching your case. best of luck. feel free to ask me anything. i have been through it all. : )

[callie0767]

thanks for the advice. i have thought about a uro.gyn but theres not here in my area. i have found one about an hour an half away in a neighboring town so thinking about changing doctors.i am at a loss at the treatment i have recieved from doctors recently. depressed about being in pain with no hope for relief in the future. i am not even sure if i want the second lupron shot-bad reaction from my bladder and the side effects all all the bad things i am now reading about it. she will really go nuts if i refuse the second lupron.she refuses pain meds cause she thinks the pain is not endo pain especially since its in my lower right side and in my groin area . she insists that even though i just started the lupron in nov that it should have killed all the endo but i don't think that is correct. she also told me that the lupron shouldn't affect my bladder but she was so wrong.but then again having ic for so long i should have known better but i was sodesperate to end the pain. i have no support system(family doesn't want to understand) and i am single and my frien lives an hour away . i am having so much trouble with the endo diagnosis than the ic.

[painfree4me]

i would not see a dr. who didn't help me manage my pain ever again. For 12 years at least 5 different drs told me that I could only take over the counter azo standard and tylenol for the pain. i was even told it was in my head, as i am sure you have heard others say. my newest dr. specializes in pelvic pain and really knows how i feel. he prescribes me more than i need and i only take something when the pain is unbearable. i have 2 little ones and i can't take anything that makes me too sleepy or loopy unless i am in agony. when i am, i can take pyridium plus, urelle, zanaflex, or hydrocodone. most of the time i have found my pain to be more muscular than anything else, and so i only take zanaflex. it is a very mild muscle relaxor...but it works. it took me a long time to figure out that most of my pain is muscular. it comes from all those years of tightening up my pelvic muscles when my bladder hurt and when my period cramps were horrible. i could have sworn it was always my bladder, but when zanaflex worked better than pyridium and bladder cocktail instillations only helped for a few hours, my dr. convinced me that it was my muscles. i have to consiously relax them several times a day. i walk around doing continous kegels if i am not careful, especially when i am stressed out. but, like i said, i hardly have a flare anymore, and it is all due to educating myself, relaxation and watching my diet. hang in there. call every ob in town if you have to and ask if they specialize in pelvic pain. and...get that book i mentioned. she talks about endo too. Chin up!!

[wingirl1999]

I don't believe that Lupron causes IC. It may cause flares, but not the disease itself. And Lupron isn't 100% guaranteed to work in everyone, so just because one doctor doesn't like, doesn't mean it doesn't work. I personally feel it's helped me. Endometriosis is such a hard thing to even diagnose...there's not enough known about it, so any doctor who acts as if they know it ALL doesn't seem like a very wise person to me. My doctor has been very honest with me...he's the one who paid attention to my pain and found the endometriosis to begin with. He never pushed me into anything...surgery, Lupron, or my recent cystoscopy which found my IC...but he has supported me and admits that there are still questions about all the treatments of endometriosis, but there also seem to be benefits for some people. I don't like doctors who treat medicines or treatments with bias...they should present facts but not jump to conclusions based on THEIR experience alone.

[painfree4me]

I totally agree about not trusting drs based on opinion. However, my doctor is a specialist in IC. Anyone with the disease should find a specialist in their condition. He is the president ot the pelvic pain society and here is a short bio: Chip Butrick, M.D. is a urogynecologist who lives and works in the Kansas City area. He attended Kansas University Medical School then traveled to St. Louis where he completed his training in Obstetrics and Gynecology at Barnes Hospital/Washington University. During his years in St. Louis he developed and began pursuing his continuing interest in caring for the urologic needs of women. He spent five years developing his skills and expanding his knowledge and experience under the tutelage of several nationally known urogynecologists and urologists.

Presently he is a board certified Obstetrician/Gynecologist who subspecializes in female urologic problems, pelvic relaxation and chronic pelvic pain.
Dr. Butrick has developed a keen understanding of both urologic and non-urologic sources of pelvic pain. He emphasizes the importance of identifying all sources of that pain (bladder, urethra, pelvic muscles, endometriosis, vaginal or introital pain) and using multiple tools to gain control of the downward spiral often associated with pelvic pain syndromes.

He is a Fellow of the American College of Obstetricians & Gynecologists, a member of the American Urogynecologic Society, a member of the Society of Laparoscopic Surgeons and he is privileged to be one of the founding fathers of the International Pelvic Pain Society and current president.

[ICLori]

When I took Lupron, I flared very badly for the first week or two, then my symptoms were about half of normal while I was on Lupron. But the hot flashes were so awful that it was almost as bad as having regular IC symptoms...

Blessings,
Lori