K.S. asks from Fort Worth, TX on August 03, 2007
Anyone Have/Had Endometriosis???
I was diagnosed with Endometriosis for the second time. The first time I had it was about 4 years ago and I had Laparoscopy surgery to cure it….at least I thought it was a cure. I had a baby 2 years later and now 2 years after having my daughter the Endometriosis has come back. I want to find out if anyone has had the same or similar situation? I do not want to go through surgery again if it will not cure the problem for good. I need advice on what to do from someone who has been there!
1 mom found this helpful
So What Happened?™
It sounds like I do not have it that bad. Thank you to everyone that shared what you went through. It is crazy to think how many women go through this and there is so little research done. Good luck to everyone and God bless!
A.K. answers from Dallas on August 04, 2007
Well, K., it sounds like you're one of the lucky ones. I've had endometriosis for, I suspect, 15 years and finally had my surgery in February. Less than two months later, it was back strong. I've had to forego my hopes of getting pregnant at this time (have never been able to conceive) because I've had to go back on birth control. The next time I have my surgery, which may be in less than a year, I'm going to do it right. I'm hoping that my insurance will cover surgery with Dr. Andrew Cook in California. Apparently people travel from all over the country and the world to go to him because he gets rid of it all. Here are some testimonials and the link to his site...http://www.pelvicpain.com/sharing.html. I also found this testimonial from a lady who's been through it and went to Dr. Cook...http://www.geocities.com/HotSprings/Spa/8509/. I hope that you can find the right doctor if you can't make it to him, because, apparently, the right surgeon is the key. If they don't get it all out (I read that there can be some microscopic-sized endometriomas that need to be seen with a microscope, obviously) it will come back. My doctor was not very good at it, clearly, since mine came back so fast. Be happy that at least you've been able to feel a baby growing in your tummy, because, for some of us, endo makes it impossible. I've adopted my son and am very blessed by him, but I still wish to bear a child. Someday, maybe..... You can e-mail me at ____@____.com if you wish to chat, and anyone else with endo or infertility, please do.
L.T. answers from Dallas on August 09, 2007
I too have struggled w/endo since I was a teenager although I didn't know it at the time. I did not realize that was the problem until I had a tubal pregnancy that aborted. I changed doctors and was diagnosed immediately. 2 weeks later I was having lap surgery. The doctor laisered what he could. Both of my tubes were blocked and they were able to get one open. The other side was so overgrown w/scar tissue the doctor couldn't do anything but leave it.Since I was trying to get pregnant my doctor spelled out my options. My endo was so severe it was considered pre-cancerous. I could try to take Lupron injections which basically puts you in temporary menapause to keep the endo from growing (or I could have a hystorectomy). I am guessing this is what the other responder is referring too. Lupron is a chemotherapy drug that is used primarily for prostate cancer in men. The doctor suggested I take for 6 months. After 4, I had had enough. The side effects were horrible. Migraine headaches, severe hot flashes, fatique, depression, muscle aches and cramps and my hair started falling out. My periods did stop and the endo subsided. I once again tried to get pregnant. I got pregnant within a few months but my system once again aborted. I was referred to a fertility specialist. After trying clomid and several other medications along with artificial insemination I was still unable to get pregnant. I opted to go the invetro-route. The fertility doctor explained that I had so much scar tissue on my uterus that the egg could not implant properly. My first attemp at invetro was unsuccessful. After trying for 10 years and everything I had been through I took a year long break. I decided to just try to get myself in the best possible health. I tried invetro again a year later. It was successful and now I have beautiful 4 year old twin girls. I was lucky that the endo stayed away until just the last couple of months. I can tell each month is getting worse. I am 44 now and so far have not gotten pregnant again. (I am unable to take birth control of any kind.) We feel so blessed to have the girls we are perfectly satisfied with just our 2 little angels. I am guessing I will probably have to have a hystorectomy within the next year or so if things continue to get worse. No one can tell you what the best option for you is but I can tell you endo is not something to mess around with. By the time I was diagnosed it was so bad that it had spread to my bladder and colon. I had colon issues for years and had all kind of tests done. They never showed anything because they were just looking at the inside of my colon. The endo was attached to the outside. The Lupron injections did get rid of the colon and bladder problems however it left me in really bad health. It took me a good year to recover. It actually damaged my liver function slightly. My mom and others ask me if it was worth it or if I would have done it if I knew what I know now. My answer is yes. (But only because I wanted to have children). If you do not want additional children I would not suggest the lupron injections. In the end even with surgury and the lupron I still ended up having to have invetro. I could have skipped all of it and went straight to invetro. Unfortunately, everyone responds differently. I did have a friend that had the surgery and lupron treatments and was able to get pregnant on her own several months later. I hope this info has helped you. May God Bless you and help you decide which path is best for you.
V.M. answers from Dallas on August 03, 2007
I have had 3 Laparoscopy surgeries for Endometriosis. I tried for 3 1/2 + years to get pregnant (with help of several fertility meds and procedures) and finally got pregnant through IVF in July 2006 and had twin boys in March!!! I won't go into my stories with it, but tell you more in short form of what I know about Endometriosis.
There is NOT a cure for Endometriosis. From my last conversation with my OB and my Infertility Specialist there is not a know cause first of all for Endometriosis. There are several medications and procedures to get rid of it and pregnancy is one of the biggest hopes since it does not have a chance to grow in your body for such a extend time. But it can come back as you hear about in many cases since there is no know cure for it.
If you want to talk more email me at ____@____.com
I would love to chat with you more!
D.F. answers from Dallas on August 03, 2007
Hi K., I know what your going thru, I had been going thru that since I was 13 yrs old. That's when i found out that I had endometrisis and had the first lap done when i was 15 yrs old..ugh.After I had myfirst child it was good then it came back but worse than before so i got on the depo-provera shot and Iwas great until I got off and tarted having the same thing but of course got pregant went away(????) and when i had my last baby it came back w/a vengence. My dr first gave me b/c to try to control it but that failed so we tried the lap surgery again and that helped for like about 2 months and when the results came baack it was worse than ever. At that time I needed to make the decesion(sp)to have a full hystertomny(sp)casaue she wsn't sure if it was my uterus bothering me or my ovaries because of the endometriosis. and if i decided to do a partial then chances were I'd be back in like 6 months doing the whole thing over again. Since I had already decided when my last one was born to tie my tubes it was ok. After I had the full hystertomny i haven't had any problems-period. Grant it iwent thru menopause very early like 31 but it was well worth it.The added plus is that I no longer have a period!!!!!! But weigh the options first I had been going thru this since I was 13 so for me it was well worth the whole process. If you need someone to talk to call me anytime to ask the questions and I'll be more than happy to answer cause I know first hand what your going thru right now sweetie.Hang in there and all will be better soon. My # is ###-###-#### if you need to talk. Talk care of yourself and listen to the dr...D.
R.J. answers from Dallas on August 05, 2007
I am very sorry that you have to go through this. I personaly do not have endrometriosis; however, I am one of the few women in my family that does not. My aunt, my cousin, my friend, and my sister all have endrometriosis and I have seen how hard it is on them. I have witnessed what my sister has gone through and it is very hard on her. At 21 she had the same surgery you had and they removed a quater sized growth; yet, the endrometriosis came back. Her doctor was one of the leading doctors in the study of endrometriosis. He told her that there is no cure and that it will come down to whether or not she wants to live with it. She has a very severe case and at 21 she was told that she should have a child now or she might never have one. She had a healthy baby girl who is now 14 years old. Pregnacy actually helps to cleanse the system of endrometriosis; there are debates on how long the signs will be gone. After her daughter was born she had no signs for about one year and a half. Now she was able to get pregnant again, and she now has twin boys who are four years old. After their birth the endrometriosis was gone for about two years, but it has come back with a vengnece. She has done exstensive research on the matter and her doctor has told her that the only cure is a histerectomy. Unfortunatly, the funding for more research is rather small so you have to make the right connections in order to be informed. I am having my sister e-mail me some information and good resource tools for you. I will send you the links as soon as I have them. Good luck to you.
K.H. answers from Dallas on August 04, 2007
I have endometriosis, DIAGNOSED 4yrs ago at age 27yr. I had the laproscopic surgery where they only went in to look around took pictures to confirm but was unable to remove any of their findings due to the location. There is a cure some type of medicationn but the side effects of it was bone deteriation and that was a chance i wasn't willing to take with my health. I still hurt sometimes not nearly like i use to but they had suggested birth control pills to help with the pain during menstrual time but i just don't wish to take medication for the remainder of my life so i went to church and got in the prayer line and prayed with my pastor that GOD would heal my body and i must say God is a healer. IF YOU CAN BELIEVE IT YOU CAN RECIEVE IT. I hope my testimony helped you but to be direct there is a cure for it don't know the name of it but surgery can remove it but yes, it can comeback it was removed not cured. My Dr. gave me material to read and my own pictures along with websites,videos to watch...I'll give you his name if you are intrested in discussing the issue further. Your Dr. should have told you there is a cure but many don't recommend it chances are great, also i only had a mild case my dr. said. I would have thought it was major so if i had a minor case i can't imagine someone with the major. DR. JOHNNY LEE HENRY ###-###-#### off Harry Hines Blvd. Give him a call just to talk about it. Wish you well