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Unread 02-19-2004, 08:12 PM
Help me my Hystersisters

Well I had my hyst in dec 2002. I have not posted for a while so let me update everybody. In July 2003, 4th of July to be exact, I had emergancie surgerie and had my right overie removed becouse of endometrosis. I was told I should not have anymore problems since everything was now out. My Dr. even said she was sorry and that she thaught she was helping by leaving one overie becouse of my age 27 at the time. She said she had no idea my endo would come back that fast. Well guess what ladies in Nov 2003 had another surgerie this time I had a cyst growing on my abdominal wall and a husge endometroma at mu cuff and bladder area. Well I was cleaned out then. I just came back from a gyn oncologist, which I should have gone to first. I have been in pain since Dec and have been told I was crazy from my former Doctor and that I am just addict to pain meds. Which I laughed at becouse I have not touched any since my last surgerie in Nov and needless to say I have some left. Well my new Dr. said that I have some of my overie left. The other dr did not get all of it out..ugh..So he wants to put me on Depo Lupron for sixth months to calm everything down and then go in and remove the left over overie, adhesions and endo. Has anyone ever heard of this happening. I was also informed by dr that I have the worst he ever saw a stage 6. My life just ***** and if it wasnt for my little one some days I think I would give up. This will be my 10th surgerie. Please help and give me some good advice. Should I do the depo for six months and then hsve surgerie. Or just beg for the surgerie now???
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Unread 02-19-2004, 08:35 PM
Help me my Hystersisters

me again anybody out there that can help??? I have dr's appt tommarow. I am so lost and fustrated. Thank you
Unread 02-19-2004, 08:57 PM
Help me my Hystersisters

I am 30 years old, had stage 4 endo, it grew everywhere, had 9 surgeries in 9 years until hysterectomy. i feel for you, i opted to have all removed because i was afraid of problems. i think the body can do inpredictable things, but the dr should have known part of the ovary was left. i guess they are not perfect. i would go to a specialist if i were you. please knpw my thoughts are with you Admin: please do not include personal e-mail addresses in your posts. For your own safety, use the "e-mail" button from your profile.
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Unread 02-19-2004, 09:04 PM
Help me my Hystersisters

Really try to find out why your DR wants to put you on the drugs before surgery. They normally have a good reason that involves a better outcome of the surgery. One of the problems is that the DR just don't tell us all the reasons and it gets frusturating! Good luck with it all. I have had quite a few surgery and know how it takes it out of you.

Unread 02-19-2004, 09:08 PM
Help me my Hystersisters

Thanks, i am just really depressed it will be 1 year on 2/25, i am only 30 and all of my friends are now having children, it is very hard for me. I appreciate your support
Unread 02-19-2004, 10:31 PM
Help me my Hystersisters

I also chose to have all removed due to endo recurring. Had left ovary removed 4 yrs ago and ovary was the only involvement at that time, although had lots of adhesions, which were removed.

Had TAH/RSO 2 weeks ago due to it coming back and was extensive. I have read on endo sites that sometimes they cannot remove all they need to due to adhesions and being stuck to other organs. Also due to your age, they may have left a peice of the ovary for hormones. My dr is very conservative and doesn't like to do anything that he doesn't have to do (especially due to controversy over hormone therapy).

I have only had 2 surgeries and cannot say that I understand completely what you are going through, but my dr gave me all of the options I had (including Lupron) but stressed that the end result would be hysterectomy anyway. I was not expecting that and had to think about it for a couple of weeks.

I have 3 children and have always had female problems. My endo was found by accident during an ultrasound when I miscarried before my last child. I thought it may be a tubal pregnancy due to the pain in my left side, but it was an endometrioma. I had a laporoscopy a couple of months later and the dr said he doesn't know how I got pregnant (They could see that I had ovulated from the left ovary when I got pregnant). The left ovary and tube were completely blocked from scar tissue due to the endometriosis (could not open it with the dye) and 2.5cm endometrioma on left ovary, and right tube was also blocked, but he was able to open it. I had miscarriage couple of months after surgery, then got pregnant with my dd. I have been on bcp since then. When I went back for an annual checkup, I told him about the pain I was experiencing on the left side. That is when he did the ultrasound and found a couple of patches of endo on the peritoneal cavity and the rest is history.

I hope that you can get everything straightened out this time around. My dr will not start me on estrogen until about 2-2 1/2 months post op. He said that it should be sufficient for the endo to die off (if he missed any). I am afraid to start them then, but I trust what he tells me. I talked to him awhile about it today and he says he doesn't want me on the Norethindrone for too long without estrogen (I guess it is harder to adjust hormones). I am not having any problems so far and am 2 weeks post op. This seemed to surprise him that I am not having hot flashes or any kind of depression.

Try to find someone that you can talk to and that isn't afraid to tell you about your problems. It is very hard around here to find independent doctors, meaning most of them now are in clinics with many other doctors and do not spend time with their patients the way that I like. My dr usually stays with me for 30-45 minutes when I have an appt, but he is in an independent practice and is very choicy about his patients he takes now. He is soon to retire. He only sees long standing patients at this point. It makes a big difference though, when you can sit down and talk to your doctor. I do not find anything embarrassing with him.

Good luck with your upcoming surgery and my prayers are with you.
Unread 02-19-2004, 11:56 PM
Help me my Hystersisters

The Lupron is because being on it will shrink the endo making it less likely that your surgeon will miss any. I was on it for 4 months before surgery and my doc is pretty confident she got it all because it cleared out so well due to the Lupron. I was pain free for 3 months on the Lupron so we knew it was effective at clearing up the endo. It is a really good idea even though I hated the Lupron for the side effects, it did great for the pain and making the surgery more effective.

Good luck!

Unread 02-20-2004, 06:55 AM
Help me my Hystersisters

Best of luck with your upcoming visit. I always feel better when I read this site.

Unread 02-20-2004, 08:26 PM
Thank you

I just love this sight and all of the support. Just got back from the dr and decided to get this shot. I talked to him about all of the side effect and he put me on add back therepy. I asked him wont the endo get worse becouse of the add back. He told me no becouse it is not enough to worry about it just helps me cope. I think I finally found a real sincere dr. He gave me some pain meds again and told me I will probably be in alot of pain over the weakend but will have none after that. He said that he hates the dr who think that people with endo are just pain killer seekers. He said if they ever took the time to look at my pictures and knew what they were looking at they would have felt awful for me. Well 6 moths of lupron and then 1 last surgery I hope...You all are right he is putting me on lupron so he can see more shen he goes in. I am going to a general surgeon next week for a colonoscopy and the bladder. He will be going in and looking for endo on the bladder or in it and my intestines and colon. If he sees it we will take care of it. Then when my gyn oncologist goes in he wont have to do anything to the blader or colon. My leg he hopes will get better on its own. thank you to all and good luck. I will keep you posted and maybe be your guys guiny pig so you women can do the right thing and not mess up like I did...

Unread 02-21-2004, 06:33 AM
Help me my Hystersisters

((((Rachelle)))) I'm so happy that you've, finally, found a doctor that you can work with and with whom you feel comfortable

I have no experience with endo and can only imagine what you've been through, dealing with this monster I just wanted to point out that there is such a condition called "Ovarian Remnant Syndrome". This syndrome is reffered to when bits of ovarian tissues were left behind after a oopherectomy. These can then grow and, sometimes, end up almost the size of an ovary. Just so you know that you are not alone

Sending lots of s your way and hoping that the Lupron and the next surgery will, finally, send you on that off-ramp that we're all looking for.

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