Endometriosis or IC?

[micky]

I have put messages on this board off and on for quite a while now. My daughter has IC (maybe) for the last 6 six years. I put a message on the PFD topic wondering about a good dr. PFD. She had a baby last June and was in total remission during her pregnancy and up until now (weaning from breastfeeding). She tried a new doctor in Miinneapolis, he is on the dr. list on this site. She saw him yesterday and he said since the IC sympotms went away during pregnancy is may have endometriosis and not IC. (She had a laposcopy and hydro/cysto 4 years ago. The Gyn. said she had 2 spots of endo and lasered them off, the uro said her bladder looked okay).
She asked him why she has pain when she eats strawberries, tomato, etc. He said he didn't know. She does not have painful periods and she got pregnant on the try.
He suggested putting her on lupron. Isn't that a dangerous drug? He said she can take a shot once a month for six months and they should know after the 2nd shot if it is working. But from what I have read on the internet you can have side effects like hot flashes and others for a years afterward.
Any ideas about this lupron would be helpful.
Thank you.

[ICNDonna]

I'm sorry that I don't have an answer for you. I am reposting this, hoping someone with experience will respond.

Donna

[ICLori]

I also had endometriosis and the docs wondered if I had endo on the bladder. So I was put on Depot Lupron monthly shots. I stopped after the second shot because I had hot flashes and other symptoms that were so severe, and my bladder was only somewhat better - the bad side effects outweighed the help it was providing me. So I never really did find out if I had endo on my bladder or not. I know I have had endo in my abdominal cavity in general though, been operated on twice for it.

Blessings, Lori

[micky]

Lori, Thank you for the reply. It confirms what I have read about the severe side effects.

[Katrina]

Lupron can be a dangerous drug...I was on it for 2 years...didn't enjoy it much and have heard some scary stories. Since it sounds to me like they endometriosis...I would have to say...sounds like she has it! That doesn't mean she doesn't have IC and there are plenty of women that have gone into remission with pregnancy and breast freeding that have IC. Endo in the bladder is often or on it is often torture.

When acidic foods put you in pain that big sign you have IC. The two diseases are often together...they reputation of being called the evil twins.

It is possible to minimize the side effects of Lupron by taking hormones...not usually something those of us with endo want to do unless we need to...I hated Lupron's side effects but did help my pain a lot...bolth IC and endo.

Lori did not exagerate the side effects of Lupron...I often think a laproscopy is safer.

If they found endo once and lazered them...it is pretty likely she has endometirosis and it will continue to come back...

If pain is her symptoms here is how I could tell the difference between endo and IC pain (pretty hard to do)
IC affected by touch a lot more...would be in the middle...sometimes felt like I was about to explode, burning, or bad PMS cramp.

Endo...not quite as sensitive to the touch..more like a musscle cramp...was often on one side or the other ...would radiate down my leg a lot.

Sure hope your daughter feels better and your grandchild is healthy and happy!

The info I have read states that when there are a lot of endo sells that make it difficult to concieve they often don't cause pain.....when they do cause a lot of pain it doesn't mean you are inferrtile.

I realize that a lot of what I said just makes it complecated to figure out...sorry
:grouphug:

[cprettykitty]

I'm 27 Been Diagnosed With Endometriosis At 17 I Have Been On Lupron Several Times. It Has Lots Of Side Of Afects Such As Hot Flashes Like A Menapuasle Woman Would Have. It Takes Your Estrogen Levels So Low That Way The Endo Has Nothing To Feed Off Of And Spred To Other Places. 3 Months Ago I Was Diagnosed With Ic Too. I Have Chronic Pain Daily And Just Started Seeing A Pain Managment Clinic. I'm On Morphine 3 Times Daily And Vicoden For Break Through Pain. It Seems To Help My Pain. I'm Also On Disablility And Can Not Work Because Of It. I Have Had No Long Term Problems With Taking Lupron At This Time And I Am 27 Now. Its A Great Drug Treating Endo.

[mela414]

i was on lupron after a lap....when they accidentally severed my artery. it helped to keep things quited down while I healed. the thought I had endo but the patholgoy reports were always neg. because of the severing of the artery I needed future surgeries to take down adhesions which were causing agony. I did 3 rounds of 6 months of Lupron...just to keep things quieted down and help the pain.....and it did! I would not have been able to get through my wedding otherwise. Having said that...it's not to say that All my pain went away.......I continued with pelvic throbbing pain and constant blood in the urine. I hadn't yet made a connection to food and beverages but...then I didn't know what IC was. My IC diagnosis came about years later.at which point i had a hysterectomy and then 2 more surgeries for ab/pelvic adhesions. i am finally adhesion free for about a year now. i was fortunate enoughto find an excellent surgeon in germany who removes adhesions and uses a spray barrier gel ( not approved here in the US) to keep the adhesions form returning.
The Lurpon also helped because it stopped ovulation so I didn't form any ovarian cysts that were a huge probem for me and caused a apin all it's own! so .....the short of it is that Lupron helped by keeping things quiet but IC was always there and needed attention. The trade off for reduction in pain was sleepless nights and terrible hot flashes.
Hope this helps to understand that you can hae both problems and both need to be addressed.

[emilyrose197377]

I just had endo removed 3 wks ago and my gyn wants to put me on lupron shots. I wish you daughter luck some people have unwanted side effects from lupron. Yes ic and endo can actually have the same symptoms if there is endo on the bladder or adhesions.
Take care
Kim

[saraeyates]

As with any drug, the effects are different for each person taking Lupron. I had a really horrible time on it, but I know that it has helped other people tremendously. As far as the menopause type side effects, YES, they can last for years afterward. I took Lupron in 1998 and 1999 and still have hot flashes and mood swings and night sweats. It never helped me for my pain, actually made it worse, and caused me to have to take fertility drugs in order to have my second child. I would just make sure that she does plenty of research before going ahead with the treatment, and I wish her luck.

[emilyrose197377]

I just came back from the gyn I definetely have endometerosis that is what my pathology report said from the surgery I had 3 wks ago . My endo is back I also have Ic so I have both my gyn started me on elmiron 200mg 2 a day and also when I go back and see her in 8 wks I am starting back on lupron and being closely mointored with the lupron and also I am staying on my bc pills for now. I am still waiting to hear on the elmiron I have to get preauthorization on it.

Take Care
Kim