now I have endo!

[alana rose]

As you all know, I have been suffering from excrutiating pain for over a year now (the other 3 years seem like nothing!) Well, I went for a cystoscopy/hydrodistention and laparoscopy last Wednesday-it sure did a number on me! They cauterized the endo (I am at a moderate level) and removed the cyst.

Anyway, I wasn't told a lot more-I really don't understand why doctors come and talk with you when you are just 'coming to'? I have an appointment with the gyno on April 14th. So, I have all of these questions...

Once the endo is removed I'm guessing that it returns, but is the meds prescribed?
How is IC pain after the endo is removed?

I should be elated that they found some of the cause for the pain, but I feel so indifferent. I should be jumping for joy, but I just feel neutral. Perhaps I just don't believe that it will help (I'm still in pain due to the surgery) I hate being negative, but I've been dealing with this 24/7 pain forever. Has anyone else felt like this...'numb' in a sense. I would love to go back to the pain level I used to have...I feel so mixed up right now.

[ICNDonna]

I hope you see some benefit from your surgery soon.

Warm healing thoughts,
Donna

[Katrina]

My own lap for Endo wasn't too bad on my IC. I didn't have a cystoscopy/hydro at the same time though...I have talked to some that felt there lap was very hard on their IC (I guess the amount they find makes a difference as well as your stage of Endo...along with how your IC is. Having a hydro at the same time may mean that after you recovery your IC pain has a lot better chance of doing better than before.

I was already on meds when I had my first lap (which may be why mine wasn't too bad). I hope you recover fast and treatment goes well!
:grouphug: Sorry you have Endo...but hopefully treatment can help you feel a lot better!

[Danielle2392]

Hi, my name is Danielle. I was diagnosed with the endo first when I was 11 years old. I am now 21. I had two laparoscopy done. One when I was 18 and the second when I was 19. The first one I felt better for about six months to a year, but then the systoms started to get worse again. I went to see a endo specialist, that is when they did my second surgery. It did not help. I begged my doctor for a hysterectomy. He then sent me to my urologist and that is when they found out the real cause of the pain. I still had a really hard time when I was on my period, but it was nothing like it was before I started treating my bladder. In my case it did not help me, but hopefully it will help you. Good luck and I hope you feel better soon.

Danielle

[holles]

i had a cystoscopy during my last lap. it did help a great deal with pain. the lap helped too. eventually, i had to go on continuous birth control pills (skipping periods) because the pain with my cycles got to be so bad. so now that i only have a few periods a year, i only have pain a few times a year. i tried lupron, but that's when i developed IC, so i don't know if lupron is a good idea for people with bladder issues. some people say it helps. i had a bad experience. and the endo was still there when i had surgery again right after stopping lupron. so far, birth control has helped the most. i used to have pain and cramps almost daily. now it's only during my period.

unfortunately endo does come back. but hormone fluctuations will fuel it faster. stopping ovulation seems to work pretty well for me. i'm not crazy about the idea because we wanted children and tried for years. but since i'm not in pain, i can live with it.

it takes a lot of trial and error. some things that work for some women don't work for all of us. you will find a treatment that works. it just takes time. there is no cure, but you can get your life back at least.

(((((((hugs)))))))

[Danielle2392]

Holy,

That is the same thing they did for me too. They put me on birth control and had me skip my periods. I think they only had me have a peroid twice a year. I also had pain when I was not on period. I was told for years that because of the IC and the endo I would not have kids. So my husband and I got used to the idea. Then I had the first stage of the Interstim nerve therapy put in on March 7, 2005. I ended up in a car accident on March 11 and had to go to the ER. I found out in the ER that I am pregnant. After everyone telling me that we could not have kids and even trying for a while, we finally ended up preganant.

Danielle