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Is there anyone I can speak with?
Hey all, I was wondering if there was anyone I could speak with and compare symptoms and treatments too. I was recently diagnosed with endometriosis on the rectum and deep into the intestines and am looking for someone with it in the same area to ask questions too, whom might be more experienced with their diagnosis. Thank you!
Hello, I am the forum leader for the Endometriosis community. I am not a doctor but I am a patient advocate.
If you want you can look at my journals in my profile to compare some notes or I can answer your questions here.
I was diagnosed with Rectovaginal Endometriosis which is what I think you are describing. 1/10 women have endometriosis and out of the 1/10 5% have rectovaginal Endo. It is not rare but it is not something everyone that endo has and it takes a great deal of skill in order to remove it and can not and should not be treated by any regular gynecologist. to be honest most gynos would leave it there do to fear.
The method of excision is used when treating this form as well as any other form of endo. That is when the disease is cut out from the root. Ablation is when the laser is used which only gets the surface of the disease. You will want someone who is skilled in this type of endo and their success rate must be high.
It is possible a bowel resection could be preformed however that is in the most rare cases. I have had two surgeries for Rectovaginal endo. The first time in 2007 which the surgeon shaved the disease off the rectovaginal area. He felt he got it all but it was very deep and the surgery was 5 hours long. It grew back within two years. He should have done a bowel resection because of how deep it was but he felt he got it all. The second surgery I had to have a large portion of my vagina removed in order to cut out the disease.
The symptoms I had before my first surgery were
1) Severe rectal pain sometimes with blood or mucus
2) I would evacuate my bowels the day before my period came every single month
3) Severe constipation
4) Bowel pain
5) Severe pain with sex
Those are the main ones. Some times they never even correlated with my period. I would be driving then suddenly I would get a really sharp pain in my rectum that would stop me right then and there.
I can help you find a surgeon in your area that can help treat this form of Endo. You want the absolute best to operate on you not just someone who has the skill. You want the one that is the best at this complex area and there are not many.
I hope this helps.
If you want you can look at my journals in my profile to compare some notes or I can answer your questions here.
I was diagnosed with Rectovaginal Endometriosis which is what I think you are describing. 1/10 women have endometriosis and out of the 1/10 5% have rectovaginal Endo. It is not rare but it is not something everyone that endo has and it takes a great deal of skill in order to remove it and can not and should not be treated by any regular gynecologist. to be honest most gynos would leave it there do to fear.
The method of excision is used when treating this form as well as any other form of endo. That is when the disease is cut out from the root. Ablation is when the laser is used which only gets the surface of the disease. You will want someone who is skilled in this type of endo and their success rate must be high.
It is possible a bowel resection could be preformed however that is in the most rare cases. I have had two surgeries for Rectovaginal endo. The first time in 2007 which the surgeon shaved the disease off the rectovaginal area. He felt he got it all but it was very deep and the surgery was 5 hours long. It grew back within two years. He should have done a bowel resection because of how deep it was but he felt he got it all. The second surgery I had to have a large portion of my vagina removed in order to cut out the disease.
The symptoms I had before my first surgery were
1) Severe rectal pain sometimes with blood or mucus
2) I would evacuate my bowels the day before my period came every single month
3) Severe constipation
4) Bowel pain
5) Severe pain with sex
Those are the main ones. Some times they never even correlated with my period. I would be driving then suddenly I would get a really sharp pain in my rectum that would stop me right then and there.
I can help you find a surgeon in your area that can help treat this form of Endo. You want the absolute best to operate on you not just someone who has the skill. You want the one that is the best at this complex area and there are not many.
I hope this helps.
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