Discussions By Condition: I cannot get a diagnosis.

Please help me

Posted In: I cannot get a diagnosis. 7 Replies
  • Posted By: desperatesufferer
  • November 16, 2008
  • 02:52 AM

Hi,
I am 23 yrs old, and have suffered since the birth of my son at 17, was told I needed a hysterectomy to fix my problems, so at 22 I decide to have one. Since then my pain has got extremely worse. I have suffered for the last 6 yrs from severe pelvic pain, been to Dr. after Dr. each of them giving me a different answer or wanting to send me to another Dr. instead of taking time to find out what is wrong with me. Here is a list of what some of the Dr's have told me is what they "think" is the problem!!!
Scar tissue, irregular cycles, Rheu. Arthisis, pelvic congestive syndrome, IBS, ulcertive colitis, bladder, kindney, cyst, and that I just haven't healed!!!
I am a very strong person and can handle anything but this feels as if someone has taken a sledhammer and crushed my private, my stomach from the belly button down feels like it is going to explode, my life has been dramatically changed from the pain I am experenicing. If anyone has any answers please let me know.
Thanks, desperatesuffer

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7 Replies:

  • Oh, my gosh. I know what you are talking about. I had a baby almost 9 years ago. I had constant pain the last 5 years and was told I had prolapse, endometriosis, ibs and interstitial cystits. I had a hysterectomy in May of this year and I have been miserable ever since. I feel like I was butchered for one thing. I still feel raw down there and it seems like they cut out a lot of tissue. The main pain is in the same area as yours below my belly button. Prior to the hysterectomy I had been to many doctors and actually had previous surgery for cystocele & rectocele in 06 that really started the pain. I was told they hysterectomy would help, but I am still hurting. I recently started physical therapy and it turns out the pain is from the pelvic floor muscles. The surgery has caused the muscles to be tight and not relaxed. I can tell a difference when the theraphist points out what is happening. If you can, have your doctor send you to a physical therapist that specializes in women's health. I am really trying to stick with it to see if I will get better. I am pretty desperate myself. It is exhausting to be in constant pain.:eek: Good luck!
    selfhelp74 3 Replies
    • November 16, 2008
    • 04:51 AM
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  • What was the result of the examination for pelvic congestion syndrome? Have you had a phlebography of the ovarian veins? Do you know if you have blood or protein in urine? Besides your other pain, do you ever have left flank pain? Do you ever have pain or swelling in your left leg? Is your pain worse after sex?
    Felsen 510 Replies
    • November 16, 2008
    • 02:18 PM
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  • Oh, my gosh. I know what you are talking about. I had a baby almost 9 years ago. I had constant pain the last 5 years and was told I had prolapse, endometriosis, ibs and interstitial cystits. I had a hysterectomy in May of this year and I have been miserable ever since. I feel like I was butchered for one thing. I still feel raw down there and it seems like they cut out a lot of tissue. The main pain is in the same area as yours below my belly button. Prior to the hysterectomy I had been to many doctors and actually had previous surgery for cystocele & rectocele in 06 that really started the pain. I was told they hysterectomy would help, but I am still hurting. I recently started physical therapy and it turns out the pain is from the pelvic floor muscles. The surgery has caused the muscles to be tight and not relaxed. I can tell a difference when the theraphist points out what is happening. If you can, have your doctor send you to a physical therapist that specializes in women's health. I am really trying to stick with it to see if I will get better. I am pretty desperate myself. It is exhausting to be in constant pain.:eek: Good luck! Thanks for ur reply, I was also told that my pelvic floor was weak, and thought this was another one of there was to get rid of me and send me somewhere else, so the pain is going away with therapy?
    desperatesufferer 3 Replies
    • November 17, 2008
    • 01:09 PM
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  • What was the result of the examination for pelvic congestion syndrome? Have you had a phlebography of the ovarian veins? Do you know if you have blood or protein in urine? Besides your other pain, do you ever have left flank pain? Do you ever have pain or swelling in your left leg? Is your pain worse after sex? I found out I had ?? Pelvic congestion failure after a MRI, then went last week for a MRV and had dye put in my veins, and he said he thought he was seeing blood pooling up, but would have to go through my juglar vein to see, I am not wanting to have this done and this not be the problem.Yes my legs and ankles swell. I haven't had my urine tested in a while but was told that protein was present in my urine, but never heard anymore about it. After sex my private/ stomach kills me for about 2 days. If you have any info. I will be glad to hear from you. Thanks for your help.
    desperatesufferer 3 Replies
    • November 17, 2008
    • 01:15 PM
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  • OK, it's called pelvic congestion syndrome (not failure). I would like you to reconcider the decision not to enter through the jugular vein. Because it is actually the easiest approach and will most certainly show the cause. I strongly suspect that the cause is the nut-cracker syndrome, or at least it must be ruled out. This condition is vastly underdiagnosed. It is when the left renal vein is compressed between aorta and the superior mesenteric artery and for each heart beat is “cracked” as a nut in a nut-cracker. With time the vein can react to this compression by producing a sort of scar tissue which leaves even less room for the blood to pass. The symptoms are left flank pain; sometimes there is blood in the urine, sometimes only little which requires a blood test, sometimes protein in urine. Since left ovarian vein drains in left renal vein, it can also give pelvic symptoms such as pelvic pain, pelvic venous congestion or pelvic varicose veins. You have typical symptoms for severe venous incompetence and since your legs are swelling as well, the should also examine your ilac veins to rule out the compression of the left common iliac vein by the right iliac artery against the spine (May-Thurner syndrome). Where in the world are you?
    Felsen 510 Replies
    • November 17, 2008
    • 11:05 PM
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  • OK, it's called pelvic congestion syndrome (not failure). I would like you to reconcider the decision not to enter through the jugular vein. Because it is actually the easiest approach and will most certainly show the cause. I strongly suspect that the cause is the nut-cracker syndrome, or at least it must be ruled out. This condition is vastly underdiagnosed. It is when the left renal vein is compressed between aorta and the superior mesenteric artery and for each heart beat is “cracked” as a nut in a nut-cracker. With time the vein can react to this compression by producing a sort of scar tissue which leaves even less room for the blood to pass. The symptoms are left flank pain; sometimes there is blood in the urine, sometimes only little which requires a blood test, sometimes protein in urine. Since left ovarian vein drains in left renal vein, it can also give pelvic symptoms such as pelvic pain, pelvic venous congestion or pelvic varicose veins. You have typical symptoms for severe venous incompetence and since your legs are swelling as well, the should also examine your ilac veins to rule out the compression of the left common iliac vein by the right iliac artery against the spine (May-Thurner syndrome). Where in the world are you? Thanks so much for the info. I am from USA_NC, I will print this off and take to my next appt. for my Dr. to see. Does this also make your stomach swell, and fill like it is going to explode? Also when I have to urinate, or have a BM then the pain is really bad. If this is left untreated what are the effects it will have on me? If you think off any thing else please let me know.
    desperatesufferer 3 Replies
    • November 18, 2008
    • 03:37 AM
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  • They have already seen that the dye is pooling up, which means you have varicose veins in your pelvis, most probably in your internal iliac vein system and your ovarian veins. This can be caused by either hormonal changes, but also by some sort of venous outflow obstruction. I strongly suspect the latter, because the hysterectomy made it worse and when you remove the ovaries you ligate both ovarian veins and this diminishes the ways of venous outflow from the pelvis dramatically. As I understand, if you have protein in urine, it can make your stomach swell. Maybe somebody here knows more about it? You must make sure that they assess the blood supply to and from your left kidney. Pelvic congestion, for what ever reason, is often associated with pain in your bladder and when having BM. Some patients develop with time collateral veins (new extra veins), but considering the worsening of your condition, you are not one of them, which means you definitely need treatment. But whatever they suggest, don’t let then close off any veins, because once it is done it can not be undone. All treatment should be directed towards opening up the outflow, ie by stenting or by-pass. I have at least some good news for you. If you are not content with the treatment they’ll offer you, one of the best vascular surgeons in the world is rather close to you. His name is Peter Neglen and he’s in River Oaks Hospital in Jackson, Miss. He has IVUS equipment which gives the best picture of venous outflow. I am really sorry for what you’re going through. I truly hope you’ll soon get help and get better. Let me know if you have other questions and please post again to tell us how it goes.
    Felsen 510 Replies
    • November 18, 2008
    • 06:10 PM
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