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Post by painttheseconds on Aug 23, 2011 10:18:50 GMT -5
I'm really happy for you Kristin. Awesome news. I'm been considering trying pelvic PT again.
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Post by Karen on Aug 23, 2011 17:56:25 GMT -5
OMG, I'm so stinking excited for you! The pooping, the SEX, the woman that KNOWS endo and massage, geez, you're going to be a totally different person after a few more sessions. And Nicholle, I think you should try again, but this time with someone that's NOT an a**hole!
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Post by painttheseconds on Aug 23, 2011 19:17:56 GMT -5
I want to especially after today. I'm hurting pretty bad today.I'm just not sure if my insurance would accept the claims since I just did PT not to long ago. I definitely need a woman not some douche bag telling me I caused my freaking endo. Ugh every time I think about that I become a very angry panda.
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Post by Karen on Aug 23, 2011 21:55:06 GMT -5
Yeah, that guy was a real douche. Just goes to show he doesn't know what he's doing. Think of how much better you could be feeling if he did! I hope your insurance doesn't let you down!
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Post by painttheseconds on Aug 23, 2011 21:57:32 GMT -5
I think I'm going to call my new OBGYN tomorrow and see if she will give me a recommendation. I need her to refill my pain meds too. Hopefully she won't give me to much trouble. I still have one percocet from my prescription they gave me last year for my surgery.
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Post by 1234 on Aug 24, 2011 8:50:11 GMT -5
Every time I think about that that (the "you caused your endo") it makes me see stars. It's so horrible.
I actually had an interesting experience with the woman yesterday. She also was horrified at the state of my abdomen, and after working on me wanted to refer me to the person that trained her, because she felt out of her league. Part of me gets a little depressed by the fact that my abdomen is already such a wreck, but it's also nice to have someone validate the amount of pain instead of just saying "you seem fine--you biked here, didn't you?". The endometrioma freak them out a little bit, and the adhesions and everything being out of place. But this woman actually was able to get below all the fascia (sp?) and to the parts that are SOOOO painful. Interesting--she at first didn't even know what they were, thought they were bone growths of some kind or something really freaky. Apparently, all the muscles that wrap the pelvis on my right side are so swollen and spasmed that they feel as hard as bones. She worked on them most of the hour. It was very painful, but I was just glad that someone had gotten down to them. However, today I am sore and bruised--it makes sense, but I'm a bit bummed.
Well actually, I don't know whether to be bummed by the soreness or glad someone was able to figure out part of the cause of all that pain. It does reaffirm for me that even if I took out teh right ovary, I wouldn't have much reduction in pain because all the implants and adhesions on the right pelvic wall have pissed those muscles off so royally that they are now a primary problem in themselves. So I feel confident in my decisions, and interested. But right now just sore!!! However, the adhesion part of me feels pretty great.
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Post by Karen on Aug 24, 2011 18:17:10 GMT -5
It does reaffirm for me that even if I took out teh right ovary, I wouldn't have much reduction in pain because all the implants and adhesions on the right pelvic wall have pissed those muscles off so royally that they are now a primary problem in themselves. So I feel confident in my decisions, and interested. I'm glad you found that out before opting for more surgery! Doesn't mean you won't have another surgery in your future, but perhaps you can get a better grip on what's going on and then see where things are at after some more work. I'm super excited she has someone else she can refer you to - means you'll get the best of the best! And I'm glad the adhesions pain is feeling better. I'm still betting that in a month or two, you'll feel totally different!
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Post by 1234 on Aug 24, 2011 21:02:00 GMT -5
I'm feeling much more positive now. I went to yoga after work and realized that so many of my pains--the stabbing vaginal pains, butt pains, back pain, and lots of the side pain are those odd pelvic floor/pelvic wall muscles. I was still sore, but in yoga I could actually feel the sore parts the therapist had manipulated and realized what they were pulling. It was really weird. Normally all I tihnk about in yoga is straightening my scoliosis (and I've gone from 55 degrees to pretty damn straight in 3 years), so it was a whole different set of things to think about. Nice, because although I know it's not the right thing to say, I find yoga boring.
I think I'm going to wait before getting referred. I need a slightly more gentle approach I think. The therapist yesterday kept asking, "can you take this?" and I kept saying "yes", but I think that endo makes us have crazy pain tolerances, and I would probably feel better today if I hadn't kept saying "yes"! I'll go see the first lady until I've softened myself up a bit in order to get pushed on by the big guns.
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Post by painttheseconds on Aug 24, 2011 22:41:02 GMT -5
Kristin you are seriously describing how I've been feeling the past few pains. My vaginal, butt and back pain has come back with a vengeance. I'm going to try a new yoga studio on Sunday and see if that helps.
I'm glad you are getting the help you need and that you are sharing with us. I may be following in your foot steps very shortly. The pain is just getting to me lately. I really hope your continues to improve.
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Post by cherry on Aug 25, 2011 5:18:30 GMT -5
I highly highly recommend pelvic PT. I thought it was just about the breaking up of adhesions, bloodflow, pains easing out with a bit of massage or something. It actually taught me so much about my body that I had ignored and shunned, the muscles. Through learning and just understanding, doing pelvic PT, strengthening my core muscles and pelvic floor I've avoided the need for more surgery and corrected pain from a back problem which only manifested when I was scrunching myself up due to endo pain. It was an endless cycle. I caused my own muscle weakness and constipation issues it seems, jammed my own nerves... but at the same time we're all blameless when we aren't told the full extent of what the pain does to us, not just psychologically or chemically, but also physiologically. It's so true the doctors often only tell us what they think we ought to know but in truth we need to know as much as them about everything surrounding endo. People are openly praising me for fighting back (they do not know how aggressively!) against the problems that I was drowning in, people who openly treated me as a hyperchondriac before... but holy moly I'm just happy to be much better than I was. 99% of what gets me through this disease is what I learned from this board and it's staff and members. So huge thank you to Karen for pointing me this way, and also thanks to rustymyrtle for encouraging me with the yoga I can remember at first it being so frustrating and more painful than it was worth... but it is 100% worth it! I couldn't get my pelvic floor to relax at all. It wouldn't hit 0... and it's hitting 0 that makes you poop, not pushing! I was seriously effed up maaaan.
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Post by Karen on Aug 25, 2011 5:56:19 GMT -5
Oh, Cherry, I'm so damn excited for you! Man, isn't it such a good feeling to know you can do something to not only feel better, but avoid or postpone more surgery that probably wouldn't have given you the relied you were looking for anyway? It's funny - I can now feel myself tense up either when I'm stressed or in pain, and it is nice to recognize that and know there are things I can do to help relax those areas so it doesn't make my pain worse.
I'm SO glad PPT was such a good experience for you!
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Post by 1234 on Aug 25, 2011 6:00:37 GMT -5
Thanks, Cherry, that was really helpful. and Paint, I hope you can go soon--I was so lucky to find this place that took my insurance.
I think the funny thing about it is that I've found this a little embarrassing. Even if only briefly, I used to be a professional dancer, and dancers develop and use lots of tiny muscles in the hips/pelvis. It sort of embarrasses me that I had no idea, even with all of that training, what was going on.
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Post by Karen on Aug 25, 2011 6:39:12 GMT -5
Nah, I don't think you have anything to be embarrassed about. I think we're all brainwashed into thinking that our pain is ALL endo, we don't even know it's an option that part of it could be our muscles overcompensating for the pain.
Although I can see why you'd want to wait a bit for the referral, the expert she wants to send you to may have a more gentle hand and may know how to pace things a bit better. I know my PPT always said that you have to know when to stop because you can over-do it. Might not hurt to try the expert once, then see where you want to go from there.
I'm just so excited for all of you!!
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Post by JC on Aug 25, 2011 8:01:42 GMT -5
Wow great story Cherry! I'm so glad this is working for everyone! I had decided that if my endo comes back this would be my next plan of action. Hopefully it doesn't though.
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Post by 1234 on Aug 31, 2011 14:32:55 GMT -5
So I think I've now found someone AGAIN who is willing to work with me and have an appt for next Tuesday. I was pretty careful in my research this time. I know that this is something I want to pursue, but finding the right person has been a bit difficult.
I didn't post this at first after my last appt with the woman who had done her graduate research on endo and massage, who was shocked at teh state of my abdomen and referred me to someone else, and who worked me so hard I was really sore for several days afterwards--but she really kind of upset me. She told me that her thesis for her research was on psychosomatic causes of endo, and her theory that all women with endo had had some severe trauma that "caused" it. That really upset me for several days, and it's taken me a bit to recover from that; I didn't really want to keep going to her and having these theories tossed at me. She also said that all my failed pregnancies were probably responsible for the spasmed pelvic floor/wall muscles. It might be true--I'm sure they contributed. But the point was that I didn't want to talk about that, not then, with someone I didn't know. I wouldn't have even told her about those, but she asked if I had any kids, was planning on getting pregnant, etc etc etc. I'm not good when people are pushy like that and sort of gave in and told her, but then had to deal both with talking to her about it and then feeling like I was sort of a piece in her puzzle. I was really upset by it all, and still trying to understand why.
I did look up the person whom she recommended--they are a bit of a haul for me. So I went back to looking around DC. and looking. and looking. After multiple deadend emails and calls, where I was told they knew nothing about endo, I finally today got a call from one of the places. The woman said she hadn't worked on endo, but asked me what I was looking for. I described the myofascial release and the spasmed pelvic floor muscles. She said she'd worked with several post-surgery adn post-traumatic injury patients, and on those pelvic muscles, and was pretty sure she'd be able to do something. She was certainly willing to try. I had a good vibe from her. She sounded like a problem-solver. So, I have an appt with her next Tues morning. And, she's just a mile from my work.
I also decided what the hell and am doing an intro appt with teh acupuncturist at teh original place, since it's on my insurance. I'm trying to go with an open mind. The first acupuncturist I went to, last winter, was really a flake. But I'm back for round 2!
Thanks for all the examples, you all, of keeping pushing. It's really inspirational.
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