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Post by mfaller3 on Nov 2, 2011 13:58:24 GMT -5
Hi everyone. My name is Maggie, and I am new to the board. I am 27 and I was diagnosed with endo about 4 years ago, and had my third surgery at the end of September because I have a lot of pain issues. The first two surgeries went fine. The recovery was quick, and I didn't have any issues. Both times, the surgeon said that there was some tissue but not what he would consider a lot. This time, I am still having a ton of pain from the surgery, even though I am more than a month out. I spoke with my surgeon, who is not the same as the surgeon I have used in the past. He told me the same thing the previous surgeons have, that there wasn't a lot of endo. And, keeps claiming that there is no way the pain I am now having is related to surgery. Yesterday, I had an appointment with my gyno, who did not perform the surgery. My gyno told me that apparently there was a lot of tissue and that the surgery was "very difficult." The surgeon said that my pelvic cavity was a disaster. I am so confused at this point. I don't understand why my surgeon would essentially lie to me. I feel like I have the right to know if the disease has progressed that much. And, it explains the pains I have been having.
I was just wondering if anyone else has had surgical pain this far out from surgery. I know when there is a lot of tissue to remove, it kind of takes it from a minor surgery to a major one. But, it have been over a month so I am concerned that I am still having so much pain.
I was also hoping for some advice on how to handle this with my surgeon. I can't even begin to understand why he wouldn't tell me it was as bad as it was. I directly asked him if there was a lot of tissue and he said no. I am so frustrated right now, and I am just not sure exactly how to handle it.
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Post by JC on Nov 2, 2011 15:26:02 GMT -5
Wow I'm so sorry this has happened. It's so frustrating when we put so much trust into someone and then get something like this that happens. I think the best advice I could give you is to get a copy of the surgical report. That's the only way you're only going to get the absolute truth for yourself and that's the only way you can be sure the doctor tells you the absolute truth to the extent of your endo. Take it with you to your appointment and tell the surgeon you want things you don't understand to be explained to you. That way you have the facts right in his face and he can't just tell you whatever he wants. I think that's the first step in at least figuring out what exactly happened and what your surgery was like. As far as your pain you're having, I hope that they can help you with that. It's hard to hear someone tell you that your pain is not from a huge surgery you just had. I think knowing exactly what they did inside will probably explain why you're in so much pain. If it was as extensive as your Gyn said it was then maybe this is why this round is different from your first two laps.
I hope this helps. I wish I could do more to help. It's not cool to be having so much pain after a month has gone by. Have you at least gotten a little better or are you getting worse? If it has gotten progressively better since your surgery it may be worth it to wait it out but if you are getting worse then I think that's a cause for concern.
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Post by 1234 on Nov 2, 2011 16:06:51 GMT -5
wow, that really, really sucks. I echo Jenaya: if you have your surgical report, then you can judge yourself how much of what is going on. Does your gyn have a copy of the report? How was she making the determination that it was difficult.
Also, I'm really sorry that the surgeon blew off your pain. That's never appropriate, even if it isn't due to the surgery. I hope you get that report soon. I'm so sorry you've been through this.
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Post by mfaller3 on Nov 2, 2011 19:57:53 GMT -5
Thanks so much! I was planning on getting a copy of the surgical report, but my gyn appointment was yesterday so I haven't gotten that far yet. I believe the gyn spoke with the surgeon. My gyn said the surgeon said the surgery was very difficult and that the pelvic cavity was a disaster, which I took to mean they have a conversation about it. But I would think that the gyn has a copy of the report as well.
I think more than anything I am angry that the surgeon lied to me about the extent of the endo. I specifically asked if there was a lot of tissue and he plainly said no, not much. My follow-up was far from comprehensive. The previous 2 times, the follow-up appointment included pictures, a detailed explanation of how surgery went, an actual inspection of the incisions and a gameplan for moving forward. This time, it included a cursory glance at the incisions, a simple statement that there wasn't much endo and the surgeon telling me to continue with bc pills and follow-up with my gyn. He also kept contradicting himself during the follow-up. For example, he told me it was diffuse, then he told me it was concentrated. He is supposed to be a really good surgeon. He is the head of the department at the hospital I go to, which is fairly reputable. But, I think he is lacking slightly in the people skills department.
As far as the pain goes, the endo pain seems to be a bit better. Definitely not gone, but I wasn't expecting the surgery to be a cure-all. And, it makes sense that if the surgery was that extensive, there is still some inflammation which could be exacerbating the endo pain at this point.
Thanks again so much for the responses! I really appreciate it. Hopefully the surgical report will give me some insight.
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Post by Karen on Nov 2, 2011 20:12:29 GMT -5
Welcome! I agree, surgical report is key! It could be your doctor had you confused with another case? Either way, its unprofessional and you deserve to know the truth!
If they did everything they were supposed to and you're recovering well but still having pain, consider looking into pelvic physical therapy. Surgery can remove the endo, but it can't undo the over-compensation to your pelvic muscles. You'd be surprised at how much relief you can get from it!
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Post by semicolon on Nov 3, 2011 20:56:33 GMT -5
I agree with the ladies, and also see if there is a path report. I have to say every surgeon is different; after my colon surgery I got a detailed op report but no pictures (I didn't really know surgeons did that!), but my endo doc took lots of pictures and walked me through them after both surgeries. Both gave me copies of the path report.
I think you have every right to voice your frustration and get more info, even if it is via a phone call. About the pain, his bedside manor might indicate his technique. My colon resection op report talks about them moving my bowel all about (I called it manhandling, but I did really like my surgeon!) while my 6-hour lap felt like nothing because my surgeon was very careful and meticulous (moving himself around structures instead of moving them around). I think a lot of surgeons don't consider this, but maybe they should!
I hope you get some answers and feel better soon!
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Post by hibiscus on Nov 4, 2011 6:04:44 GMT -5
Maggie, are you sure that you and these doctors are taking about the same thing?
When you say 'tissue' do you mean actual endo lesions, or might that 'tissue' be adhesions (likely a resulting from the previous ops and the endo)?
Adhesions and Endo Lesions are different things but both can cause agony.
Your surgeon might be correct when he says there wasn't much endo visible, and the gynae might be correct in saying it was a disaster area, and difficult. That suggests to me that adhesions is the problem. Adhesions will glue the organs together and make a surgery very complicated. If you had no adhesions and just had endo, the surgery would be straightforward because the surgeon could freely move around the pelvic cavity and find the endo.
If it is adhesions all the surfaces are stuck like unset treacle to each other, that would indicate adhesions and would explain why it was a complicated surgery.
You should ask to see the report if you can (esier done in the USA than the UK depends where you live.) Or clarify with both your surgeon and the gynae what they mean by 'tissue'.
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Post by mfaller3 on Nov 7, 2011 13:55:26 GMT -5
Thanks again everyone! I have tried the PT route, but I should probably give it a second attempt. In general, I am not really a fan of PT. I hated it for my ankle and shoulder. The pelvic PT was no different, so I have been avoiding it as much as possible. Which, obviously isn't a very good call on my part.
The gyn had said there was a lot of endo. But, there may have been adhesions as well. I don't know what he meant when he said it was a disaster. I probably should have asked, but I felt like it was something that would be better directed toward the surgeon. I have been out of town, so I haven't been able to get a copy of the report quite yet. So, I don't know which one potentially caused the problems.
What the gyn told me is much more in line with what the surgeon told my mom immediately post-op. He had said that there was a lot of endo that needed to be removed. So, when I had my follow-up with him I was surprised when he said that there wasn't much. So, I don't think my gyn had me confused with another patient. It is more likely that the surgeon did, in my opinion. He does a lot of surgeries. So, it is understandable that they could all sort of run together when he is speaking to the patients. And, he wasn't looking at my chart when he was discussing the surgery with me, so maybe he just forgot which surgery was which. But, I suppose I will figure it all out when I get the path report!
Thanks again!!
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Post by Karen on Nov 7, 2011 19:22:36 GMT -5
Did the pelvic PT include myofascial release (which is awesome)? Or was it just stretches and exercises (which doesn't have as much as an impact)?
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Post by mfaller3 on Nov 10, 2011 23:03:26 GMT -5
It was just stretches and exercises. I will definitely ask about the myofascial release this time. Maybe that will make it more effective. Thanks!
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