I saw a post on Inspire.com from someone who had horrible pelvic pain and had had every test done to figure out what was wrong. I had the same experience and was able to resolve it. It turned out to be a long reply and then I realized it was a perfect post.
HERE IS MY LESSON LEARNED ABOUT PELVIC PAIN AND EHLERS DANLOS.
Everybody talks about neck and shoulder pain, back pain is a great ice breaker. What isn't talked about enough is pelvic pain. It happens to both men and women and it hurts like a @%#!
I had a similar history of pain in my ovary, uterine and pubic bone area. What is usually called the pelvic girdle. Without all the attachments in that area being free moving and strong, you will be off balance and have large areas of referred and direct pain.
In my case, the pain was so bad they took out my left ovary thinking that would help. Needless to say it didn't help. I felt like I was doubled over most of the day in some of the unimaginable pain. Nobody believed me. Nothing showed up. It also effected my stomach and my bowels.
20 20 hind site is a great educator so here is my lesson learned. I hope it can help you and others.
IT TURNED OUT TO BE TRIGGER POINTS, THICKENED FASCIA AND TAUT BANDS. It wasn't a problems with my muscles or internal organ systems. It was, wait for it, a problem with my CONNECTIVE TISSUE. Really? wish I knew about EDS back then.
Try this. Lay on your bed and put lotion on the tips of your four fingers, but not your thumb. Start at the top of your hip. look up an anatomy book and find the iliac crest. With broad strokes go gently from your "iliac crest" to your pubic bone. See if that hurts. Don't push into one spot directly, but close your eyes and think about what you are feeling. You need to push hard enough so that you are below the "fat" level, hitting muscle, but not digging in. Like a good massage.
1. does it hurt to even push down slightly on the top top of your hip? What about if you stroke a bit harder? Try the same thing on the OTHER SIDE. Does it feel the same or does one side hurt more than the other? Don't push with your finger into those areas unless it gives relief. My guess is that it will hurt a lot if you do. For self diagnostics don't jab and stab. Long strokes following your body line.
2. Repeat with long strokes like carving a sand in at the beach. If all the imaging came out negative for problems it won't hurt you to do the same carving just a bit harder in and around your stomach and uterus. Don't be shy. It is your own body. Try going from your belly button to your pubic bone and try going from your waist to your belly button. Keep your fingers gliding smoothly.
3. Push directly down on your pubic bone. Does it hurt? Does it send referred pain to your back near your SI joint or around your pelvis?
4. can you feel ropey bands that are the width of a pencil that your fingers can go one side to the other on.
5. Now, the final test that may really hurt. There is a muscle called the psoas. it is the inside of your hip and connects your hip to your pelvic area and stabilizes you when walking. It is also one of the most painful muscles in the world to release. Moving your lotioned fingers from the top of your inner hip follow that line inwards as if carving a pocket into your hip - but the inside, not outside. Does that hurt?
If ANY of those hurt you are on your way to diagnosing yourself. If any of them feel like tight muscles or knots you are on your way to diagnosing yourself. If you press on one place and it hurts somewhere completely different (like pubic bone to belly button or SI joint) then you are on your way to being your own detective.
This is what I wish I knew back then. I hurt so much in the pelvic area I let them take out my ovary. Made sense. They pressed down and it hurt right over the ovary. Wrong. They were pressing through connective tissue that was taut and had trigger points and banding. It also turned out that when I finally got my pubic bone released, my SI stopped hurting for the first time in 5+ years.
The key is to close your eyes. Don't have anyone around you and make sure you can relax and be analytical about it. Make sure that whatever you check on your left that you check on your right. My guess is that one side will be much worse than the other.
If the answer to any of these questions is yes, then it is soft tissue. Connective tissue. It is the fact that every test you have had came out negative that gives me the thought that it is similar to my problems. I was told I was nuts, told nothing was wrong, told to go to sex therapy because it was my pelvis, and more.
When you finish all this, jot down the results and any relationships you notice or feel. The same technique can be used for any part of your body. Anatomy books help so you can see where the muscles start and end. Try to follow them as you become your own diagnostician.
If there are positions that you know make it worse or better try the same thing but in whatever position it is in. It drives me crazy when I show the doctors something that hurts, they say lay down and let me take a look and then they can't reproduce what you just showed them. Use natural positions after your basic trial. Only you know what makes it worse and better. Not me and certainly not a doctor that only has 15 minutes.
don't rush. Take half an hour. Ultimately is like giving yourself a great massage. You deserve it. By the end of that massage, with a bit of 20 20 hind site and armed with knowledge you will know more about your body. Remember, when you press down it is not always an organ. You have to go through a lot of connective tissue before you hit organs. You already had organs and systems check. That wasn't it. So now look at what is around all of those organs and systems.
People often forget that Ehlers Danlos is a syndrome of connective tissue dysfunction. We look at all of the symptoms and forget that about the connective tissue part. I do it so often. Then nothing shows in the tests and I get frustrated. You have more time than the doctors do.
What do you do if it does have any of the things I just talked about. First, go to a physical therapist that does "manual release". If they don't, go somewhere else. Don't let them give you stretching exercises and tell you to come back next week. I personally love PT's that are trained in sports medicine. they know attachments and anatomy and relationships better than basic rehab specialists.
Second, if your state allows it, go to a PT that does Dry needling. Same outcome as trigger point release, manual release, trigger point injections, etc, but WAY less painful and takes only a few sessions.
Hope this helps. I spent 8 years in pelvic hell before I narrowed it down to a few culprit attachments. Remember that your pelvis is a 3 dimensional object. Just because you can't fix everything with release doesn't mean there isn't something there. Maybe another time I will share about how I got the UroGYN to stick needles all the way up my "hoo ha" to release my internal vaginal trigger points. Not fun but wow did I feel better. The look on his face when I told him what I thought was wrong and what I wanted him to do to fix it was priceless. He had never done it but as an experience surgeon he was willing to safely try. He is still surprised to this day how well it worked.
Hope this helps.
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