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Post by willow82 on Mar 23, 2014 11:25:58 GMT -5
I have been excellent since my second excision surgery and subtotal hysterectomy, for the most part. However, I continue to have problems with my right hip, leg (mostly thigh), and other hot spots on my right side. My gyn and I both agree it is likely nerve damage from years of endo affecting that side of my body. The pain is MUCH less, and MUCH less frequent than before surgery. Also, it no longer feels like it is radiating from my pelvis, like it used to.
My PT exercises have had limited impact on it. Also, I am doubtful pelvic floor physio would be very useful at this point since my pelvic floor is in excellent shape. I just had my surgery followup and I'm perfect in there. I very much agree with this since I'm no longer having any bowel issues, rectal issues, or pelvic problems.
My mobility is also improved, and the muscles don't seem to be messed up like they used to be on that side of my body. It really seems to be the nerves. A heating pad really helps, along with hot baths, and I can go weeks without any pain. Though with weather changes, etc, it gets bad. Any pressure on or jarring of that leg also triggers it.
I'm considering Cymbalta maybe? It's not so bad that'd I want to do Lyrica or Neurontin. I also could really benefit from having an depressant. due to a long history of depression.
I'm also trying to figure out what else may help. Even if maybe some other form of PT would be appropriate.
Thoughts? Ideas?
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Post by Karen on Mar 23, 2014 16:08:23 GMT -5
Visceral release or myofascia release is really awesome. Does your pt do that? Some massage therapists do, too. It's wonderful and usually gets to the root of the pain.
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Post by willow82 on Mar 23, 2014 21:33:19 GMT -5
Yes, my PT does that, and my boyfriend does that. For me it makes the pain worse. Which is why I am pretty certain it's from the nerves. Exercising moderately does help some, but I can't super work that side of my body. And wherever it is the pelvic floor PT couldn't get directly to the source. Right now it is better than it was when I was in PT, likely because of surgery. Though since moderate exercise helps I'm wondering if a PT for maybe sciatic pain, might be able to help me figure out what is working and not working with how I move my body. I'm gonna make an appointment with my GP soon.
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Post by omaklackey on Apr 19, 2014 0:37:56 GMT -5
It sounds pretty similair to what I'm dealing with. I personally think its just more endometriosis growing back, deeper and in places that arent' readily accesible to surgery. The reason I think this is because there is no reason that it wouldn't grow everywhere else and NOT go further into the tissue. There was a "mystery Diagnosis" a few years ago and the woman finally found a surgeon to look and she had Endomtriosis growing on her sciatic nerve. I was doing fascial release with my PT but she is $80 dollars a visit and I wasn't sure how much it was helping. All I know is for a short while after my surgery the pain had settled down but its now 8 months later and its as bad as before. Grr... Stupid Endo
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Post by willow82 on Apr 19, 2014 18:53:39 GMT -5
A woman on hystersisters said it sounded like Piriformis Syndrome www.webmd.com/pain-management/guide/piriformis-syndrome-causes-symptoms-treatments . I tend to agree with that. I'm also paranoid about it being endo though. The symptoms sometimes come and go like they used to. Like I'm good for a few weeks, and then not good for a week or so. Around this time every month for the past 4-5 months I am a bit rough around the edges. I still have ovaries. The leg pain has gotten a bit better since the weather has been warmer. Though today my belly is locked up and bloated. Nothing right now is as bad as it was before my second surgery. This disease is so frustrating. Sometimes I wish there was a permanent surveillance system in my pelvis so we knew what was going on in there! I try to stay hopeful, because if I stop I don't know how I'd go on.
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Post by willow82 on Jan 17, 2015 19:40:47 GMT -5
I just wanted to update this:
Right after this post I started Cymbalta and within a couple weeks the pain was gone. However, I developed chronic migraines, and Cymbalta wasn't helpful as a maintenance drug for those. I tried Neurontin (Gabapentin) it helped neither the migraines or the nerve pain (it came right back). I then was put on Amitriptyline which works as a migraine preventative, on my nerve damage, and as an anti-depressant. I've been entirely off Cymbalta for a few weeks and have had no reoccurrence of pain from the nerve damage. I take 100mg of Amitriptyline daily.
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T
New Member
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Post by T on Jan 18, 2015 2:38:58 GMT -5
Hey there, Just wondering where exactly you are experiencing your pain. Something new has started for me and my doctor is unable to explain it. I suddenly have pain in left groin area, somedays the pain is so bad it radiates down the front of my leg and I can barely walk. Is this similar to what you have/are experiencing?
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Post by willow82 on Jan 18, 2015 4:15:02 GMT -5
That's pretty much the same thing I have, just on the right side. Over the years it worsened to where it included my right lower back and right hip as well. The leg pain was like someone was pulling the tendons out of my leg through the groin.
At my first excision I had extensive endo in the rectal vaginal space, primarily on the right side, and my specialist said this was likely the source of the pain. This was further confirmed by my pelvic PT, and my second specialist who did the partial hysterectomy for my adenomyosis,
However, despite two thorough excision surgeries I still had the pain, my GP and endo specialist both feel it is likely nerve and muscle damage on that side of my pelvis from all the years of endo/adeno.
However, balanced serotonin norepinephrine anti-depressants (like Cymbalta and amitriptlyine) seem to take care of it.
If you haven't had a lap yet definitely find an endo specialist and have the surgery. While it may not fix everything it will slow down the damage, and make whatever leftover problems there are much easier to treat.
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T
New Member
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Post by T on Jan 18, 2015 12:36:22 GMT -5
Thanks for the response and the information. I had a lap about a year and a half ago and I felt great afterwards. However, the last 6 months the pain is back. I originally only had the pain on my left side front and back but this groin pain is completely new. My doctor doesn't want to do another surgery so soon so has me trying all the meds, Minerva (which was useless) and now Visanne, which doesn't appear to be working either and I'm concerned it's affecting my blood pressure (which has spiked for no apparent reason in the past month). I'm thinking at this point it's probably in my best interest to find a endo specialist and not just a gyno. As I said, my gyno couldn't really explain the new groin pain given my history so I appreciate the help.
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