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Post by deborah1 on Jan 27, 2013 8:53:35 GMT -5
My name is Debbie. I am a 34 year old married mother of two girls. I was diagnosed with endo in May,2010. I had a lot of pain for years before, and two laps for ovarian cysts, both on my left ovary. After I was diagnosed, I had two laps to laser off the lesions and also had my left ovary removed. My endo is back in full force. My ob/gyn told me it is too extensive for him and sent me to one of his collegues who is supposed to be the best doctor for endo, and also the best surgeon. This is the same dr. Who diagnosed my endo without telling me what it was! He had the bedside manner of a horse which is why I switched doctors. I was so rady for him to be his usual co,d self, but just had my appt. with him and he was actually quite nice! We made a plan for another lap, this time cutting it out and also doing a presacral neurectomy. I am on the urgent list for surgery and I am hopeful. Wondering if anyone else has had the presacral neurectomy performed and how it worked for them. I also have a tilted uterus, I think caused by either my endo or the previous surgeries.
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Post by hellsbells on Jan 27, 2013 15:55:23 GMT -5
Hello Debbie! I can't really comment as to the best of my knowledge I have neither. I'm planning another surgery soon and I'll only do it if I can have it cut out. Keep us posted!
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Post by deborah1 on Jan 27, 2013 16:39:10 GMT -5
I agree with the cutting vs. laser. Sorry for all the spelling mistakes, it was six in the morning,lol. I will post everything to do with my surgery and recovery as I have gotten so much from reading everyone's stories! This dr. Has a rep for being very meticulous so that has to be good! As for the tilted uterus(which caus some painful sex), there is not much he can do because he said if he stitched it back in place, it would eventually just fall back. Opinions? It also causes very painful bowel movements as it rests right on my cul de sac, which is riddled with endo. Wish me luck!
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Post by Karen on Jan 27, 2013 17:20:17 GMT -5
Welcome to the board! I'm glad you had a much better experience with the doctor this time. I hope your surgery date comes up quickly and the doctor is able to remove all of what he sees. Here's a thread on the PN: endo-resolved.proboards.com/index.cgi?board=surgery&action=display&thread=5083As for your tilted uterus, I'd be curious as to why it's tilted. You might need to wait until you have your surgery to figure that out, which would help determine if/what to do about it. Good luck & keep us posted!
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Post by semicolon on Jan 27, 2013 18:26:38 GMT -5
Welcome, i'm Deb and I'm also 34. Some folks have a tilted uterus for no reason, and it is not always a problem (some believe it is an issue for getting pregnant, but sounds like it hasn't been for you!). They probably could tell more after surgery.
As for that, I'd be a little worried about having another surgery with this doc as you already had an unsuccessful one (if I'm reading this right- correct me if I'm wrong). Any doc who thinks laser/burning is the best first approach is not quite up on the best practices for endo. Where do you live?
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Post by semicolon on Jan 27, 2013 18:28:10 GMT -5
Oops, didn't see your post on the painful sex. That might be more from endo in the cul de sac or rectum and not the uterus.
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Post by deborah1 on Jan 27, 2013 19:49:50 GMT -5
It was the first doc who did the lasering. He sent me to this new one who will be cutting it out only. No laser! I was very adament about that and he agreed with me. I think he was surprised at how much I knew about endo. I told him when you are in constant pain, all you can do is try to research what will take it away! Radical excision and presacral neurectomy is the plan! I hope it helps, this will be surgery # 5!
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Post by deborah1 on Jan 27, 2013 19:51:04 GMT -5
By the way, I did not have a tilted uterus when I had my kids! Not sure when it happened, but only got told about a month ago!
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Post by deborah1 on Jan 27, 2013 19:55:02 GMT -5
I didn't say before, but I'm in Saskatchewan, Canada. Very few specialists and very little support up here! I'm so glad I found this forum. People who really understand what it's like....
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Post by semicolon on Jan 28, 2013 19:40:32 GMT -5
I've heard of a Dr. Belland in Calgary, but that seems kind of far. :/. We are lacking specialists in generally, unfortunately.
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Post by chibineko717 on Jan 29, 2013 15:48:22 GMT -5
Welcome!
I responded to your post in the Dr. M thread about the presacral neurectomy. It did not help with my pain too much, but the pain was mostly from other areas. I don't know about about the tilted uterus since mine was adhesed down to my bowels and cul de sac. Dr. M also put in Interceed between the uterus and cul de sac so more adhesions would not form. Maybe Botox can help keep your uterus from tilting? Dr. M injected some in my levator muscles.
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Post by deborah1 on Jan 29, 2013 21:03:01 GMT -5
Hmm, never heard of the botox thing! I have to ask my doc about that! I am nervous and excited for my lap. I have had five but always with laser. I hope the results are better with excision(cutting) out the lesions. I am hopeful the presacral will help with pain. I worry that my last oc told me I have tons of needle like lesions, can my current doc possibly cut them out even though they are small? He knows what they are like, so I'm guessing he feels he can, but will I look like swiss cheese in there? I don't care, even if the reovery is longer, I just want to feel better! Thanks for the response, and I will keep everyone posted!
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Post by deborah1 on Feb 6, 2013 22:26:34 GMT -5
Got the date for my surgery today.... March 5, 6:30 am. Feels so long right now.😞 Having a very bad pain week so far. Shooting pain in my left side and intense pain in my rectum. Hurts to walk,sit, or move. Also, I am so tired of being so damn tired! I never thought I'd say I was so excited for surgery. I hope that it provides me with some relief so I can have a normal day. I had to keep laying down for a 1/2 hour or so after doing a little activity. I'm so sick of telling my family I'm having a bad pain day!!
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Post by butterfly80 on Feb 7, 2013 6:14:24 GMT -5
Hope that your surgery goes great and that you find comfort i'm the days ahead waiting for surgery. Waiting is always so hard when in such pain
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Post by deborah1 on Feb 7, 2013 7:34:26 GMT -5
Thanks Butterfly, me too.
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