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Update - Saw Specialist in GA, excision and hyst
Hey everyone! I was on not too long ago asking about a full hyster for a "cure" for endo...the more research I did the more I found that many woman continue to have problems after a full hyst. I decided it was time to see an actual endo specialist...After sending in all my medical records and such the specialist called me with his impression and what he could do for me - I scheduled surgery 3 weeks later :-) I had my surgery done March 11, 2011. He excised all spots of endo (excision is much better than laser vap, it gets ALL of it) and also all suspected spots. He was even able to remove the endo on my diaphragm. He also removed my uterus b/c of the strong possibility of adenomyosis. He was able to leave my ovaries (I'm 25). Now that it's gone, I have about a 1-4% chance of it coming back compared to the 80-90% chance with a regular lap with laser vap. I'm a week out of surgery and I'm feeling pretty good. A bit slow getting around and I still can't bend or lift anything yet. Pain is pretty minimal too. For anyone suffering with endo, I strongly encourage you all to see an actual specialist...Everything with endo makes perfect sense now and so does the treatment!!! Feel free to contact me if you have any questions :-)
I am going to see how the hystosonogram goes on the first. My husband is coming with me to it so he can be there to help me decide what to do. If they say I need surgery AGAIN then I think we are going to talk to her about the hysterectomy. I just don't want to keep going back every few months for more u/s's and surgery.
I encourage everyone to see an actual specialist - Endo is very tricky and can appear in many different color in many different places, all of which regular surgeons don't know what to look for beside that blue/black color we always see in our pictures from the laps.
I think we owe it to ourselves and our families to be a pain free as possible.
I had stage 4 but nothing on my bowels or intestines. I'm sorry you all are going through all of this, but be proactive in your healthcare!! Do what you feel is right! I do want to add that if endo is not carefully excised, those little spots can create their own estrogen thus leaving you with the same pain you had before your FULL hysterectomy. That was what made me change my mind in jut sticking around here and getting a full hyster done. No one here can excise it. I also got the I'm Too Young thing from my doctors here...Grrrr lol!!
Now I do have both my ovaries (minus 1/2 my right one I lost from an endometrioma). With all the endo being excised there are no more roots for it to grow back - and since my uterus is gone no more periods (woot!!) so I don't have to worry about when I'll start, won't have the painful periods and such, and I don't have to take hormone replacement therapy. I hope everyone can find hope and new information through my journey and help make their journey a little easier in finding relief. If anyone has any questions, feel free to send me a message!
I think we owe it to ourselves and our families to be a pain free as possible.
I had stage 4 but nothing on my bowels or intestines. I'm sorry you all are going through all of this, but be proactive in your healthcare!! Do what you feel is right! I do want to add that if endo is not carefully excised, those little spots can create their own estrogen thus leaving you with the same pain you had before your FULL hysterectomy. That was what made me change my mind in jut sticking around here and getting a full hyster done. No one here can excise it. I also got the I'm Too Young thing from my doctors here...Grrrr lol!!
Now I do have both my ovaries (minus 1/2 my right one I lost from an endometrioma). With all the endo being excised there are no more roots for it to grow back - and since my uterus is gone no more periods (woot!!) so I don't have to worry about when I'll start, won't have the painful periods and such, and I don't have to take hormone replacement therapy. I hope everyone can find hope and new information through my journey and help make their journey a little easier in finding relief. If anyone has any questions, feel free to send me a message!
This is great to finally talk to people that are contemplating the same thing. I have put this off for some time and I know I need to do it for me. I am just not sure if my surgeon is in on it and if he is not I dont think that I could trust anyone else but him to do it because of my previous bowl issues.
Now are all of you having your ovaries taken as well? I wanted to leave the one ovary that hasnt caused too many problems but I def need to remove the other one.
Now are all of you having your ovaries taken as well? I wanted to leave the one ovary that hasnt caused too many problems but I def need to remove the other one.
That's great to hear yours went so well and you're doing good so far.
I just saw my gyn today; he did a laproscopy (endometrial ablation too) said since that didn't work and my sono shows my Endo/Adeno has worsened; I need a full hysterectomy.
please take care of yourself and keep us updated =)
I just saw my gyn today; he did a laproscopy (endometrial ablation too) said since that didn't work and my sono shows my Endo/Adeno has worsened; I need a full hysterectomy.
please take care of yourself and keep us updated =)
Ooh that "too young" comment sets my BS meter ticking. I've heard of too many doctors/specialists saying that for whatever reason. If you have your children and you want the pain to end and think the hysterectomy is the answer that woman needs to take a step back and let YOU decide.
I'm glad to hear that everything worked out for you. I am so happy for you!!!
What stage of endo did you have? I was diagnosed with it in February, but they figure I have had it for a while now. My doctor said I have stage 1 but I am in pain all the time. I had a laparoscopy in January to remove a cyst and that is when they found the endo. She removed all of the endo she could find. When I met with her after my lap and she told me about the endo she said that the only way to be sure that it won't continue to come back would be to have a hysterectomy, but then she followed by telling me that I am too young for that. Now only a couple months later I have to go back in for another diagnostic hystosonogram because when I went in for a TVUS a couple weeks ago they found 2 more cysts on my left ovary, more possible endo on my right ovary, my uterine lining was much thicker than it should be and there is a lump or something on my uterine wall. If I need another surgery this will be my 3rd for these type of problems in less than a year. I just don't know what to do anymore. We have kids, my pregnancies were both difficult and I KNOW I don't want any more kids.
What stage of endo did you have? I was diagnosed with it in February, but they figure I have had it for a while now. My doctor said I have stage 1 but I am in pain all the time. I had a laparoscopy in January to remove a cyst and that is when they found the endo. She removed all of the endo she could find. When I met with her after my lap and she told me about the endo she said that the only way to be sure that it won't continue to come back would be to have a hysterectomy, but then she followed by telling me that I am too young for that. Now only a couple months later I have to go back in for another diagnostic hystosonogram because when I went in for a TVUS a couple weeks ago they found 2 more cysts on my left ovary, more possible endo on my right ovary, my uterine lining was much thicker than it should be and there is a lump or something on my uterine wall. If I need another surgery this will be my 3rd for these type of problems in less than a year. I just don't know what to do anymore. We have kids, my pregnancies were both difficult and I KNOW I don't want any more kids.
Thanks for letting me know about your success story :)
I too am contemplating a hysterectomy and just waiting to hear from my specialist.
I have a child and I dont think I want anymore but my boyfriend of a year that I plan on being with long term doesnt have any and although he said whatever happens happens and he is understanding of this disease I feel bad to have to make the decision to do this.
I am 34 in a couple of months and I promised myself by 35 i would have one done if Iwas still suffering.
My endo seems to really attack the colon and the ovary seems to be drawn to the uterus and keeps getting stuck to it. So I want to remove the uterus plus that one ovary to see what happens.
I am not sure if he is going to want to preform this surgery but I want it to be him because he is the best surgeon for this disease in canada.
I too am contemplating a hysterectomy and just waiting to hear from my specialist.
I have a child and I dont think I want anymore but my boyfriend of a year that I plan on being with long term doesnt have any and although he said whatever happens happens and he is understanding of this disease I feel bad to have to make the decision to do this.
I am 34 in a couple of months and I promised myself by 35 i would have one done if Iwas still suffering.
My endo seems to really attack the colon and the ovary seems to be drawn to the uterus and keeps getting stuck to it. So I want to remove the uterus plus that one ovary to see what happens.
I am not sure if he is going to want to preform this surgery but I want it to be him because he is the best surgeon for this disease in canada.
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