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Post by Lady Tewlie :P on Aug 3, 2011 22:40:46 GMT -5
Oh, and I started getting some kind of nerve compression that made my legs feel all electric-y. I think that is letting up, though. I had a just-in-case dopplar imagining on my legs, and they were fine, so it isn't clots.
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Post by jessabug on Aug 3, 2011 22:47:03 GMT -5
Girl, there are SO many of us who took ages to get better! I did hear something or other on the boards about a "pinched nerve" feeling that may or may not be related to healing pains as the nerve-endings re-awaken after surgery. I saw this posted by a member, don't know how much truth there is to it though. I did experience a bit of this, but so much more of my pain was more like endo pain (dull ache, heavy ache where I had the worst endo, waves of explodey-crampy endo pain across the whole abdomen, pain during BM's, mild occasional pain during urination, pain during pelvic exams). I'm a little bit behind you (I think my surgery was a teensy bit more recent) but this past week I was extremely fatigued, and I honestly can't be sure whether I should blame it on the possible endo or on the surgery recovery. It seems so farfetched that I'd still be hurting! I guess what I'm saying is, you aren't alone! I was FREAKING out last week because the pain was extremely bad (I was ovulating) and I was like, "What the hell?! The surgery was supposed to FIX everything!!" .. So personally, I've sought out a specialist in my area (I'm from Oregon) and am waiting to see what he has to say. Wouldn't hurt for you to give that a shot either, if you truly believe that your pain is endo related and not surgery related (and YOU know your body best -- not the doctors!).
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Post by jessabug on Aug 3, 2011 22:48:07 GMT -5
(p.s. -- at least your doc was nice enough to give you a more generous timeframe; many of us have been told that our recovery time would be 2-4 days! Bullsh*t!)
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Post by Karen on Aug 4, 2011 5:33:58 GMT -5
Pelvic PT, pelvic PT!!!! I swear, it does wonders! Prior to it, I was sure I would need another lap in the next year or two since the pain sucked. Spasms, burning pain, tightness, tugging, etc. I walked out of that first PT appointment feeling like a totally different person! Don't get me wrong, it is not a magic cure, but it helped SO much and best part - all natural. She would be working on my right pelvic area where I had the worst issues and I would feel things snap and release on the complete other side. It felt awesome! I think it should be a standard treatment option for anyone with endo. Really. If you can get a good PT that knows visceral or fascia (I've heard it called both), it's amazing! Oh, and I've read that adhesions start to form 3 DAYS after surgery, and then over time get tighter and thicker, so there's always a risk that surgery could do more harm than good in terms of adhesions. I'll step off my soapbox now. I hope the two of you are able to get some relief, and I hope you at least consider PT!
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Post by 1234 on Aug 4, 2011 6:09:25 GMT -5
Karen, I'm interested in your soapbox. It helps with endo pain as well as adhesion pain?
I'm just tired of going to doctors that don't help. I've googled pelvic PT DC a couple of times, and not found much. What am I doing wrong?
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Post by Karen on Aug 4, 2011 6:16:52 GMT -5
A lot of the pain I had I thought was just endo pain, but when your muscles are all jacked up from being in pain, things can get so tight and would up. A lot of what my PT was doing was relaxing the muscles so Id get better blood flow to my girlie parts, and all of that made a world of difference!
In the PT thread, there's a link to a PT association where you can search by specialty. Or you can call around to various PT clinics and say you're looking for the best pelvic PT available. Some are only trained in pelvic floor dysfunction and urinary incontinence, so be sure to ask if they do visceral or fascia (sp?) Release. Or call your gyn - they probably know of a good one and can refer you. My PT had a looooong wait list because she was the only one that was fully trained in her clinic, and she said she saw women with complaints similar to me every day. It's a lot more common than you'd think!
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Post by JC on Aug 4, 2011 10:42:36 GMT -5
Here are 2 links to find PPT in the area: www.pelvicpain.org/www.apta.org/AM/Template.cfm?Sect....ndaptsearch.cfmAs far as the pain felt from adhesions vs. endometrial implants, adhesions are a pulling and tight sensation and endometrial implants cause pain from inflammation although I think endo implants can cause the pulling and tightness too. I think if my pelvic pain came back I'd definitely try the pelvic physical therapy. At this point, my body is telling me that anything is better than taking meds.
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Post by omaklackey on Aug 4, 2011 12:17:55 GMT -5
Its to bad more insurance companies wouldn't recognize the need for PT after sugery to aid with adhesions!! It just makes sense. I found several PT's trained in it even in my small town.
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Post by 1234 on Aug 4, 2011 19:31:24 GMT -5
Thanks, both of you. I really appreciate it. I need to find something else. Meds aren't for me--the one pain pill I've taken convinced me of that. And I would so much rather have more pain than how I felt on bcp. Most of my anger of endo is that I was put on those things at 14, and half my life has been warped by those things. My husband's bizarre combination of pepper, kelp, and tumeric (in pill form) seems to have some effect, but not enough. My last period, I had 2 weeks of pain, worse than before my surgery, and this ovulation week has been ridiculous!
But HAH even despite all of that, I worked a full day as a bicycle mechanic so f**k endo!!!!
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Post by Lady Tewlie :P on Aug 4, 2011 20:40:12 GMT -5
Thanks everyone for the advice! I'm going to look into the PT. I don't understand why doctors don't recommend this, or at least suggest it when you keep calling them a month, 2 months later with pain that sounds like adhesions. The only reason I even thought of this as something that might help was because of the unexpected relief after the mashing of the site during my sonogram.
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Post by Karen on Aug 5, 2011 5:07:53 GMT -5
I know, I don't get why doctors don't suggest it more... I wish you guys luck and hope you can get a bit of relief, if not more!
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Post by jessabug on Aug 13, 2011 17:48:22 GMT -5
Ew ew ew! I think I may have discovered an adhesion in a really weird spot.... about a week ago I started noticing that whenever I pee, when I flex that muscle (you know, the one that like makes pee stop & go? idk what it's called), I feel something pop inside me. Sorry for TMI, but just to be sure that it's not a one time thing, I flex the same muscle a few times again after it happens and it keeps doing it. It was especially pronounced today and kind of weirded me out.. it doesn't hurt at all, but it's this weird tugging & popping feeling? Kind of like when a joint is just barely out of place but not enough to totally crack? SO weird feeling. Icky!
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jaye
Full Member
Posts: 165
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Post by jaye on Sept 4, 2011 17:26:46 GMT -5
I'm getting a Maya massage on Wednesday. I'm hoping it has similar benefits as the PPT. I think they ask to see you for 3 cycles plus there is home care that you do yourself. I'll report back on it when I know more.
My adhesions are only painful for a few days after my period but they are my worst pain. I can feel a bad one on my right ovary. I can also feel one low and deep in my pelvic cavity on the left side. The thing that creeps me out are the super high adhesions; I can feel them all the way up to my diaghragm.
Diet changes did sooo much for my other pain/symptoms but hasn't really touched the adhesion pain. I wonder if diet changes would correct it over time or if they require manual manipulation?
Does anyone know what happens once the adhesions are released? I imagine that tissue gets reabsorbed by the body but maybe not.
Another question I have is why are there only specific times in my cycle I can feel them? Is that true for everyone? Is it generally after the period? I wonder what's going on in my body then to make them painful. Are they inflamed and that puts pressure on the organs?
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Post by Karen on Sept 5, 2011 8:32:45 GMT -5
Good luck, Jaye! A friend of mine had maya abdominal massage done and really enjoyed it. Let us know how it goes!
You know, I'm not sure what happens to the adhesions once they are released. Good question! My theory on why they only cause issues at specific times during your cycle is based on inflammation, though it's just a hunch.
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Post by semicolon on Nov 9, 2011 19:26:09 GMT -5
Ok gals, I need some input here. I have been having increasing side discomfort around thorugh the back this week, today was crappy (plus some wave of nausea during an eval- hard to keep your cool in that!). It's kind of like the stitch I would get with the endo on the diaphragm, but only this is a little lower and not during my period but right around my incisions traveling to my back with a solid ache especially with a deep breath (my lap in Sept was for the diaphragm and appendix). I feel like this is adhesion-related, although I might want to check it's not a kidney or something. I've tried some stretching this week but it didn't really help. Sitting in the car really aggravates it, and I sit on a lot stools at work which is orob not good. The ache is really freaking annoying!!
Any thoughts? If this continues to get worse, I am in trouble! I was poking through the PPT thread, but haven't found anyone in my area just yet.
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