Endometriosis

[eyespook]

I have endometrosis and in the last 1 1/2 have had two surgerys to remove adhesions and endometrosis. After my first surgery I started have pain with my bladder in the mornings. It's gotten worse with time. The last surgery I had was 12/26/07 and they also did a Cystoscopy and a hydrodenstion. The only thing they found regarding my bladder was that I my bladder was still full and I had a little bit of endo on the top of my bladder but no endo inside of the bladder. They said they found no signs of IC Prior to this surgery I had a cystoscopy and the urologist didn't find any IC or Endo as well. Well since my last surgery my pain has only gotten worse. Just to give you an idea, today I have take 1 1/2 7.5 Perocets and I am still in pain.
I wake up during the night 1-3 times with my bladder full and I relieve myself. After voiding my bladder hurts more. In the morning when I wake up for work I have to take 1 perocet and lay in bed for 45 minutes before I can even get up. This pain slowly goes away during the day.
I went to the urologist yesterday that assisted with my surgery. He checked my bladder after I went to the restoom and I still had 2 1/2 ounces of urine in my bladder. He told me that even though it didn't appear that I have IC that I may still have it because of my symstoms. I have not had any infections or UTIs. I do have frequency and Urgency. He's put me on Elimron and said it takes 3-6 months to start working. IT's fustrating because since IC has already been ruled out twice I have doubts that is what my problem is. Also my pain is getting so severe that it's worrying me. I am not sure how long my Gyno will give me perocets. Does anyone else have the severe pain in the mornings? I am in a lot of pain right now writing this....If you have any words of advice or can just tell me I am not alone it would be greatly appreciated.

[Lael]

I had surgery in 2001 and had a cyst on my ovary removed that was attached to my abdominal wall thru adhesions and after that i did ok for 7 years now I have been having cramping before, during, and after my period I have been bleeding for 2 weeks straight my tubes are tied and don't take b/c pills so I don't know what the hell is wrong one day I hurt so bad I couldn't move all day it was sooo bad. I guess I will have to go have another surgery to have this taken off to top this off I scheduleda tubal reversal next week and scheduled this before I started having this bleeding problem so I hope they can still do the surgery. But I know it sucks I have had these problems since I was 13 years old and am now 28 it sucks.

[diana.ross]

I totally understand the pain issue!! Mine starts out real bad first thing in the morning and comes and goes all day and then really bad and in tears by the end of most nights!! I have had a laperscopemy in sep of last year and my gyn said she burned out allot but with where all it is there wasn't much they could do about it but put me on lupron for a year to slow it down but a year later I am back where I started. This all came after about a half of a years worth of run around and guesses. I have already been told that I only have about 2-3 yrs before I will have to loose everything and I am 26 yrs old. I did all the drugs to begin with: percs, morphin, demeral, tylonal 3, and what ever they would give me until they finally figured out that it was endomentriosis (along with PCOS). Now they tell me that none of it is really going to do anything but maybe taking plain old tylonal for a couple of days a row and hot baths and relax but I can't get them to understand that is hard when you hurt that bad! My new thing is that I can't get pregnant so if anyone has any cheap home things for that because I can't get tricare to cover much of anything until I go crazy.

[carrolltonia]

Hello I am sorry you are in such pain because I to have the same problems. But I do have both IC and endrometriosis. With the IC I had the first dr tell me I had it and then my insurance changed and I had to change doctors. So I went to my new uro and he said he did not think I had IC it was just the endro on my bladder causing the pain. So he did a cysto and Hydro and said he did not see any Ic but would treat me for it anyway. WEll like you I did not want to take the meds if I did not have IC. Well six lap surgeries and a Partial Hysterectomy and I still had pain. So about two months I went to a new uro and he to did a cysto and Hydro and he said I do have IC and even gave me a picture to show me. It is so hard when you put your trust into dr's and you get diffrent results from diffrent dr's who do you trust. I think by what you said about the pain and getting up in the middle of the night that you have IC. Those are the same symtoms that I have and I finnaly have a dr who knows what he is talking about.

[Juneau]

Hello all,

My name is Meghan and I work for Juneau Biosciences, a company conducting a study to identify how a woman's genetic makeup affects her chances of developing endometriosis. With this information, there will be an opportunity for drug companies to manufacture treatments with higher success rates and fewer side effects, and doctors will be able to diagnose this condition before the painful and destructive symptoms arise.

Right now we are still looking for participants to help with this study, both women who do have endometriosis as well as those who do not. To learn more about this research, visit www.endtoendo.com.

With your help, we might see the day where endometriosis is not something our daughters ever have to worry about. Best wishes to all of you in this Womens Health Channel Forum!

[AmIStupid]

When I was real young, I was suffering with excruciating pain. During the excruciating pain, I would spot. This went on for almost a year. I did not know what to do. I finally had a OBGYN who did a laparoscopy surgery. At that time, I was told I either had early signs of endometriosis or I could have irritable bowel syndrome. She couldn't really tell me which it was. She put me on birth control pills because of the endometriosis. I have been on the depo and on diff types of birth control pills. I even tried to go off birth control pills but I couldn't as I had to go back on them. Then I started having another excruciating pain that I lived with for another year... it go to the point where I wanted to shoot myself. It would happen once or twice in the middle of the night about a week before I was going to start my period. I finally went back to a doctor. It determined it was my gall bladder. When I had my gall bladder taken out, I had the surgeon do another laparoscopy to see about the endometriosis as I was told it could be either that or IBS. To me, I was not 100% sure what it was. I was even treated for IBS... I forgot the name of the pill... but it made things worse and I stopped taking the pill. The surgeon who took out my gall bladder said he did not see any signs of endometriosis... he saw that I have a very large Fibroid on top of my uterus. Now, I dunno if I have endo or not. When I mentioned this to my current OBGYN which is a different doctor who did my first laparoscopy, she said that she could feel the fibroid when she did my yearly exam. So, how come I was never told about the Fibroid before? I was told that birth control will keep the fibroid from growing... So, all of this has been up in the air for a long time as I really do not know what to think about what I have been diagnosed with... After having the gall bladder taken out, I did go back off the birth control pill for awhile. I felt good and did not suffer at all. I had to go back on birth control pill because I became really stressed out from a job which made me skip my period for 3 months. I have not tried to go back off the birth control pill since. Sometimes, I just dunno what to think...