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endrometriosis???

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  • Zanni2
    replied
    I had fibroids and endometriosis which always made my IC symptoms worse during ovulation and PMS. Birth control pills didn't do much for me so 8 months ago, I had a hysterectomy with removal of the ovaries. For most of this time I was on estrogen replacement, however, for me this turned out to be a big mistake. eek When I was on the patch especially, it was like being in PMS all over again! My bladder went more nuts than it usually does! That was almost a month ago. Since I stopped taking estrogen, I have no more PMS like symptoms, just the usual IC symptoms.

    I've had IC for 4 1/2 years now and I'm still searching for an effective treatment. I have failed miserably with medical as well as alternative treatments. I know I need to think positively, yet as time goes on with one failure after another, it's getting harder and harder to keep my spirits up. I'm a moderate/severe case judging by my symptoms and repeated flares caused mostly by foods. I find it very difficult to follow the IC Diet. It is so limiting. In order to follow it strictly, I would have to give up going out to eat (there would go what little social life I have left). I'd also starve to death! cussing

    Anyway, if you have repeated endometriosis, a hysterectomy with removal of the ovaries would probably be the only real cure for it. Most treatments for that only work for a short time from what I've heard. Also, the ovaries are responsible for creating endometriosis so it wouldn't do any good to leave them in. That's what my GYN told me before my complete hysterectomy.

    Good luck in whatever treatment plan you choose,

    Zanni2 angel

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  • holles
    replied
    i had a laparoscopy in 2002 and was dx with endometriosis. i had some spots on my bladder that were causing pain during my periods. i did depo-lupron to put me in temporary menopause, and that's when the really bad bladder pain started. along with the blood. my obgyn and a urologist did a second laparscopy with a cystoscopy in june 2003. they dx still more endometriosis (but not on the bladder this time) and IC. my obgyn says the two are auto-immune diseases and are related somehow.

    but i didn't develop IC or the symptoms of it until a few weeks after starting lupron. don't know if the estrogen loss compromised my bladder or if it was already there and just got worse.

    i do get flares right before my period starts, but they aren't bad. it's nothing like the pain i had when the endo was on the bladder.

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  • mimirogier
    replied
    I have endometriosis. I had a laparascopy right after I was diagnosed with IC. I had some spots on my bladder. I haven't had anything else done, but I was on BC and my gyn had me skipping periods. Now I can no longer do that, so I'm sure I'll have to have another laparascopy at some point. I'll have them check out my ovary that is always growing cysts while they are in there.

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  • Katrina
    replied
    hi! Yes a lot of women with IC have Endo...I Have met a log. I just had a full hysterctomy because of my Endo...it helped a lot but I still have symptoms sometimes. Having bladder pain and Endo pain at the same time was hell. Good luck on getting the best treatment you can for both.....I would think you would be interested in Lupron.

    Lots of luck and feel free to private message me if you have anymore quesitons or thought...or just want to vent.

    hugs,

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  • Vicki Brown
    replied
    I feel your pain having 3 laproscopies many years ago. The endo was awful, severe pain most days along with additional symptoms and trying to take care of 2 toddlers. So, 12 years ago I had a hysterectomy. My gyno said surgery was longer thank expected bc endo wrapped around my bladder and he had to take bladder out and work hard to scrap all the endo off. The hyst. was the best thing I ever did bc I never had the pain again. I battled it for 4 yrs. and tried most of the treatments and since I already had my children it seemed like the last straw even thouogh I was only 34. I refused lupron bc it was brand new then and side effects were acne, depression and weight gain, already battling and didn't need more. I don't know what the dr.'s would do now for someone in my situation.

    Well, I didn't put the years after surgery of constant uti's or what I thought were uti until last year when my diagnosis of ic. Uro stated perhaps all those years ago I did have ic, but we'll never know,if I had been treated for ic way back, perhaps I wouldn't have needed surgery or perhaps severe endo. wrapped around bladder attributed to ic. I don't have any regrets and think it was the best bc I felt great after surgery and ever since. Anyway, there is a lot of info for endo on a pain website and they will even mail you info on endo. My 18 yr. old daughter has it and she also has constant uti's. Sh's not good about going to the dr. or taking her meds. and since she's away in college it's out of my control. I've spoken to my uro and he said he could culture, put her on a daily med to prevent uti and see if that helps. But of course, she needs to go!

    I wish all you with endo the best of luck in finding relief. My prayers are with you. Julie grouphug angel kissing

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  • lwilke
    replied
    I have endo and IC as well. I've had about 3 or 4 laparoscopies to remove the endo. After doing my own research on the subject of endo and my bladder I asked my gyno to help me figure out if the endo was causing my bladder problems. I was sent to southern Canada (Edmonton, Alberta) to do all kinds of tests and it was there I was diagnosed with IC which I always knew I had. I am currently on another trial of Lupron. I am in my 3rd month. Something is going wrong as I am having a period with cramps and everything, although the cramps don't seem to be that bad. I did notice that my hips are very sore when I walk, when I sit and when I sleep on my side! I a regular doctor's appointment March 10 to see if I can get refered again to the gyno. I am very frustrated today and had a "I'm feeling sorry for myself moment" along with tears. This summer the boyfriend and I are moving to Calgary Alberta and I hope to find a great urologist and gyno there to help me. I just have to remain positive that things are going to get better for me.

    I have made the connection yet to my endo and IC flares. I have only made the connection to certain foods or beverages that I consume affect my IC flares.

    Arcticfox hi

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  • ICNJess
    replied
    I have endo/pcos and IC. If you look through the site some more at the guest lectures, there is a whole discussion on the connection of Endo and IC.

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  • Amber O.
    replied
    Leann,
    Hi.I was diagnosed w/ Endo @ age 19, I am now 27. I have had 5 laperoscopies to remove the Endo. My last was July 28th last year and it is alredy back. Usually after the surgery pain goes away I am not in pain untill it comes back again this last time it did not. I was diagnosed w/ IC on DEc.11th. NOw, that it is back there is definately way more pain.I am new to teh IC thing but I have researched alot on Endo. Feel free to email me, if you want.
    Love,
    Amber [email protected]

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  • photomom
    started a topic endrometriosis???

    endrometriosis???

    I just had laproscopy surgery monday and found out I had stage 4 endrometrosis. I was DX IC 4 months ago..... any link between them both? URGYN thinks I may have less pain now that he has removed it all. Hopefully my pain will be limited to only flares now?

    Any one else have this too?
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