# Anyone have personal experience with endo?



## Zenovia (Mar 12, 2001)

--------------------------------------------------------------------------------I have not been on this board consistently since this year began b/c I have been very ill. I was wondering if there is anyone out there with endometriosis or who was misdiagnosed with this that can give me some advice. To make a long story short I have always suspected my IBS could really be endometriosis and low and behold after a "bladder infection" which came back negative, an ovarian cyst, lots of pain, a couple of ultrasounds, and a couple of pelvic exams my primary physician and my new ob/gyn thinks I have endo. My husband and I want children and my ob/gyn said to go ahead a try. She also gave me the option of a laproscopy/laparotomy for a definite diagnosis. My husband and I discussed this thoroughly and decided that it would be better to know if I have this disease before attempting to conceive. Has anyone else been through this? Can anyone shed some light? I have done research online and feel informed but I would like to hear some personal experiences if anyone would be so kind as to share them. Oh, and how did you deal with this emotionally (I am a basket case and holding on by a thread)?Thank you in advance for any help!


----------



## SLBEL3 (Jun 1, 2000)

Hi. boy can I relate to that. I suffered many times over the course of 10 years with endometriosis. It was first diagnosed when I had a laparoscopy in 1992 to remove a ton of scar tissue from an emergency c-section. Then again it came back but only caused me to have my period more often. I had no problem having another child in 1994. Last year the pain got so bad that I had to have a total hysterectomy (other than one ovary)because of the severity of the pain and the constant bleeding. I was having my periods for 8 weeks at a time. While we thought that would help with the pain of IBS along with the female problems. But because of the hysterectomy being done abdominally instead of vaginally it caused more scar tissue. My last ultrasound also revealed that although my uterus is gone as well as both tubes, one ovary, and my cervix, the endo is back, only now it's on my bladder and cervix. Now I have to have my last ovary removed so it won't come back again.A laparoscopy is your best bet before you conceive because if it is severe enough and is in your uterus as well as out, you may not be able to carry a baby to term. The lap is a day surgery, and after about 2 weeks you feel good as new. Also during the lap they can get rid of the endometriosis that they can find and it will be easier for you to get pregnant. My husband and I tried for 3 years to no avail for my second child. Then i had another lap done and within a couple months I was preg. Don't sweat it though. as far as the endo being worse than IBS it's not. Endo can be removed very easily, ibs can't.During the surgery they will make a small 1/2 inch incision at your pubic line, one in or under your naval, and maybe one in between the two. and they heal very quickly.Good luck and keep your chin up.


----------



## JenS (Dec 18, 2000)

There are many of the board with endo. I have had two laproscopies, they are easy. If I were in your shoes, I would have the laproscopy and get "cleaned out" -- it should make getting pregnant much easier for you.


----------



## Zenovia (Mar 12, 2001)

Thank you so much SLBEL3 and JenS!  I have scheduled the lap for June 19 and asked for some pain medication in the meantime. Boy what a ride!


----------



## bug! (Jul 10, 2000)

Hi thereI have years of experience with Endo. I am about to have my 5th surgery on May 17th, this time for adhesions to my bowel (an unfortunate complication of surgery and endo)I wanted to say that Laparoscopies are NOT always easy. I had a hysterectomy via laparoscope and was in surgery for 4 1/2 hours. My doc is an Endo specialist and a laparoscopy specialist as well and that is why he could do my surgery in this way. Most other doctors would have done the laparotomy on my particular case. I had endo everywhere, ovaries, uterus, appendix, bowel, attached to my pelvic walls, even on my diaphragm. I was told for years that all I had was IBS. HA! what a joke. I went to 6 different GYN's until I got ONE who was not ignorant.My advise is, be educated and believe in what your body is telling you. Just because a person has an M.D. after their name doesn't mean they know the answer ....a hard lesson.Also, find a specialist if possible. It will better your odds at preserving your fertility.feel free to mail me anytime.Tjm4x5###aol.comTake careTiffany


----------



## Zenovia (Mar 12, 2001)

thanks bug!, unfortunately I haven't found a specialist in Austin. Did your insurance support you in seeing a specialist?


----------



## bug! (Jul 10, 2000)

Hi Zenovia.My insurance did cover my GYN specialist.But, it's because he was in my insurance plan as a doctor. It's not easy to find someone who specializes in endo but, you can find a doctor who is aware of the disease and knows how to identify it and remove it. That's very important. You'd be surprised that some GYN's still don't even know what it is.take caretiffany


----------



## ibsdaisy123 (May 7, 2002)

My doctor says it is safe to try to conceive w/endo, in fact pregnancy usually relieves the symptoms. I had all of the symptoms of endo but had a lap done and had very little endo. I still have the pain-from IBS I guess. You should probably gt a lap done


----------

