Also got diagnosed with endo...

[JMichele]

Hi. I was just diagnosed with endometriosis on Wed. My gyno stated he "doesn't believe in IC and I am now cured". He also said the endo would not ever come back. Of course, I laughed at his first statement b/c I wish it was that easy...I wish IC wasn't real either...however, I've had it for years now and know far too much about it to be doubting if it even exists! In response to his 2nd statement; doesn't endo come back...I mean how can he predict that "it will be gone forever"? He "zapped" it all...said it was about stage 2 and it was under both ovaries and on the dome of my bladder. He wants me to have one lupron shot now, and one in 3 months. I have seen others post with questions about the lupron shot but was wondering if there's anyone around my age (25) that has endo and IC and what their treatment plan has been for the endo. (well, and for the IC). I have heard nothing good about lupron so far. I'm feeling a little overwhelmed and unfortunately, my boyfriend is not very supportive this time around. When I came home from the hospital Wed. after the laproscopy I gave him the notes my sister took about what the Dr. said...his response consisted of, "oh, well, hopefully your pain will be gone next week and you'll be back to your old self." and "what, he wants you to get pregnant sooner, ya right, like that's gonna happen!". So basically he doesn't even know what endo is and when I told him I wish he could come with me to my follow-up appt. Tuesday he said, "why? you're gonna tell me everything that the Dr. says anyway". So, I am just very frustrated with his lack of support. Right now I don't want to hear that I'll be better next week...to me this just complicates things even more. I'm trying not to be pessimistic (sp?) but in reality it is just another thing that I will always have. I am seeing a specialist for IC next month...switching urologists...it looks like I may have to switch gyno's too to find one that "believes in IC". Thanks for reading this and letting me vent. Sorry it is such a long post. Any responses of what you guys think would be very appreciated.

[Portia17]

When I was going to all doctors to try and figure out what was wrong, the gyno did a lapro and all and found absolutely nothing. He did say I could have something where you would have your uterus out and pain would be gone (i cant remember the name of the disease) but he said that would be the last resort and told me to go to the urologist to see if i had i.c. I thank god for this gyno because I did not have a hysterectomy for nothing.
As for you and endo, I would go with the lupron shots as my gyno said it works well when he was trying to see if i had endo but I did not

[JMichele]

Well, although I got only 1 response...(thank you Mary~Portia)...I am feeling better today. It does help even to just type out what you are feeling on here whether you get responses or not. My boyfriend and I had a long talk last night...he says this is overwhelming him lately and he doesn't know how to handle it. Hmmm, me too. So, my only response to that was just that he communicate with me. So, we'll see if there's a change there. As for the Lupron and the endo treatments my non-IC believing gyno is recommending I do...I am going to wait until after I see the new uro next month. So, I guess researching, talking, and venting helped a lot. :)

[Babs RN]

Sorry it took me so long to pop up--I have been throught the Lupron multiple times, and eventually had a hysterectomy in 2002 for endo. Lupron has some nasty side effects, but really helped shrink some of my larger implants. I wanted to respond yesterday but wasn't feeling all that great. Partner support is very helpful with both of these diseases, and I have had one child. Hubby is a military dude and has no sympathy for any of this...so I just wanted to let you know I am here and have been there.

Hugs,
Barb :grouphug:

[tjackson]

Wow...where do I start. First of all, as you know, both IC and endo are real. They are also both incurable diseases. The cause of both diseases is unknown. AND endo and IC coexist so frequently that they are called the "Evil Twins" and medical articles have been written about this fact. You definately need a new Gyn, if he doesn't believe in IC and thinks he can "cure" your endo. Yikes!...run run run away. Because believe me, endo does come back.

As far as the lack of support, I can relate. My boyfriend of 2 years just bailed out on me. I'm 38, never been married, and no kids. I thought he and I were it. I think that the fact that my fertility was placed under the microscope freaked him out, as well as my mood changes on Lupron. (I've only been on the Lupron for 3 weeks. I haven't gone crazy or anything; I've just been in a bit of a bad mood.) We just broke up last night, and I'm still in that weird numb zone. I expect the proverbial ****to hit the fan emotionally very soon. It really sucks. So anyway, I can relate. that's all. He couldn't have picked a worse time.

Hope it turns out better for you.

:(

[ICNDonna]

I don't have endo and have never been treated with lupron so I can't answer that question, but if you have a physician who doesn't believe in IC --- or who feels treating endo will "cure" IC --- I have to agree that a change could be your best option.

Warm healing thoughts,
Donna

[navemj]

Hello,
I am 26 and have endo + IC. I was diagnosed with IC five years ago and developed endometriosis last year. At first I started having blood in my urine (microscopic). Then I started having severe pelvic pain. It was so bad I felt like I was having contractions or something. Every time my fever would raise my pain would get worse. My doctor done lapo and found endometriosis and lasered it off. After the surgery my pain got worse. I really wanted to die. I developed vulvodynia. My doc put me on the birth control patch because I refused to take the shot that would stop everything and throw me into menapause! My sister took it and she has never been the same. I finally went on elavil and started depo shots. At first I bled constantly but finaly everything stopped. I do have mood swings sometimes, but part of that is because I have chronic pain. Hope this info helps.
Maryann

[massagedoula]

What are the symptoms of endo? Sorry about the stupid question, but now I am curious...what if it is something I may have and was focusing so much on the bladder that I didn't think to ask about it? It was told to me that I may have either IC or Endo 2 months ago when my symptoms started, but then every doctor I saw after that focused only on my bladder problems, though I still am undaignosed.
Thanks!

[JMichele]

Massagedoula,

I have always had chronic pain with IC, but it got much worse the past six months. I didn't know anything about endo and didn't even consider it until my periods starting becoming irregular and I started spotting and passing clots at random times throughout the month (and I was on the pill). That is one of the signs of endo. Other symptoms are chronic pelvic pain and painful sex. Basically the same symptoms as IC. So, I guess until you have a laproscopy you never know if you have it or not. No one really brought up the possiblity that I might have had it before when I would describe my symptoms (just always blamed it on IC flaring up)...but come to find out I have had endo for years...there was a lot of scar tissue/old endo in there. Good luck, I know how frustrating it is to try to find answers.

[alana rose]

I have severe IC and last month diagnosed with endo. I have tried everything for IC and am on a very strick diet. I knew something else was causing the pain. The IC pain has been so severe over the past year. I have stage 2 endo-my gyno cauterized it. I had it extensively around my ovaries and also on my bladder. I had the Lupron shot on Monday and am praying that it takes some of this pain away. I am so tired (mentally/physically) of dealing with severe pain and am tired of having to take pain meds just to get through the day. I started a medical leave of absence on Monday-I am just so exhausted. It is very hard to work 40 hours a week. I haven't heard about the side effects of Lupron-only what I have read in the write-up. I do have the bone/muscle/joint pain-am very happy that I am not working. If the Lupron doesn't work my gyno is sending me to a endo clinic in Vancouver. He hasn't mentioned anything about a hysterectomy. I don't have any children and don't plan on having any either. So being on Lupron doesn't affect be in that way.

I wish you well...