Discussions By Condition: I cannot get a diagnosis.

Leg weakness, weird sensory symptom, adenomyosis

Posted In: I cannot get a diagnosis. 6 Replies
  • Posted By: Anonymous
  • February 7, 2007
  • 00:33 PM

My name is Carol and I am 45 years old. I had two children in the
early 90's (one by caesarian and a miscarriage in 2000 - no
pregnancies (that I am aware of) of since.

My vaginal ultrasound showed possible adenomyosis because of
irregular edges and an endometrial lining thickess of 20mm. This was
consistent with the type of pain and bleeding I was experiencing
(along wth gas, bloating, constipation & migraines around my period)
and I was not surprised to hear adenomyosis.

I have never been diagnosed with endometriosis, although I have had
some odd pains here and there when I get my period (kidney and back
specifically)and suspect there's some there. When searching for a
source for that pain, I had an Ab CT which showed free fluid in my
cul de sac - could that have been endo?

My doctor is reluctant to do a lap becoz he said my uterus feels
normal on pelvic exam (which I have always had around day 14 of my
cycle). When I insisted, he agreed to do an endo biopsy which I am
having tomorrow.

I really would like to hang onto my uterus, altho I will not take
birth control pills as he suggests, because I feel they amplified the
problem (throwing estrogen on an estrogen fueled fire...) I
certainly want to give gluten free diet, supplements, progesterone
cream and candida cleanse, etc. a chance.

Here's my question. I am concerned because a new symptom that has
developed around my period in the last few months is a weird
sensation in my legs - example - i cross my legs and the skin being
touched almost reverberates. In past months i have had some leg
muscle weakness, which I did not connect to period pain, but I now
realize must have been related. I gave up all Rx meds afraid that my
weak legs were some kind of side effect, but here I am 3 days from
Day 28, and here it is again. I am guessing it must somehow
connected to the adeno however I have never read anywhere about
anyone experiencing this symptom.

I have a tipped uterus and I am wondering if my enlarged uterus is
resting on my spine, or whether some endo tissue has attached itself

Does anyone have any thoughts? I have been cool so far, but this
kinda scares me. Thanks.

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6 Replies:

  • hi, i'm afraid i don't have any answers but i had a hysterectomy four years ago and discovered upon pathology that i had severe adenomyosis. about eight months ago i suddenly developed weakness in my lower legs and partial complete numbness in my feet. i never heard of any of these things being connected but if i discover any kind of connection i will definitely pass the info to you. if you discover any connection, let me know. hang in there, you are not alone. cherylanne
    cherylanne 13 Replies Flag this Response
  • I have been searching trying to find somebody that has the same crazy symptoms that I have. I am 38 and just had a hysterectomy two weeks ago. I was hoping that the pain in my abdomin and legs would be resolved by taking the uterus. Well as of yesterday all my leg/pelvic pain has returned. It is throbbing, numbness and even heat and heaviness. I am devastated, to say the least. I too had adenomyosis, endometriosis and pelvic congestion syndrome. The doctors did tell me that they could not promise that the hysterectomy would be the answer but I felt I had no other choice. The pain was really interferring with my life. I go back for my surgery checkup on Wednesday and will discuss with them why I still have such pain. If you learn anything about your symptoms I would really appreciate your sharing your findings. If I get any answers I will do the same.
    Anonymous 42789 Replies Flag this Response
  • hi there, in my case the abdominal pain, migraines, hot flashes and everything got resolved when i had my hysterectomy four years ago. my legs and feet appear to be a separate issue. maybe there is some connection with decreased hormone levels affecting other systems? they managed to leave me one ovary so i wouldn't go into complete menopause because i already have degenerative spine disease and i'm only 37. all i know is, i am at my wits end. i would dance naked around a campfire sacrificing chickens if i though it would do any good! maybe a nerve leading to the legs and feet was pinched when surgery was done on your abdomen? i have now developed what looks like an autoimmune respose within myself, for two months i have had chronic severe hives and the deep constant itch is driving me crazy! i'm on four different meds for it and have an appt to see an immunologist. hang in there, if i discover anything that may help us i will definitely let you know!
    Anonymous 42789 Replies Flag this Response
  • Thanks everyone. It helps to know that I am not alone in experiencing unusual and seemingly unrelated conditions. I am 42 years old and I have had issues with my menstrual cycle dating back to the onset of my first period. I have terrible pain with excessive bleeding and my laparoscopy that I had nearly a decade and a half ago revealed an enlarged globular uterus consistent with adenomyosis. Hormone therapy did not work for me; in fact it made matters worse... so I resigned myself to the fact that my life would need to "wait" for the first few days of my periods every month and I learned to live around them...About 2 years ago, I had an acute onset of low back pain that began to radiate to both hips and into my lower left extremity. I had numbness and weakness, tingling, pulsing, and throbbing in the left leg and calf; etc... Although I have disk degeneration and a couple of herniated disks the docs don't seem to feel that my pain syndrome represents the appropriate manifest for those conditions. My lumbar MRI had inadvertently revealed a T1 hypodensity in the myometrium (but I have yet to find a doc to explain what that means). I am convinced that this issue with the low back and leg is associated with my female cycle; as it becomes heightened at the onset through just after the duration of my period. I also have sharp stabbing pains in my uterus with excessive pelvic distention; etc...My hope is that the medical industry can become more highly evolved to listen to patients and treat these corelational issues with a greater sense of open-mindedness and importance.
    Anonymous 42789 Replies Flag this Response
  • I have struggled with similar issues. I do have adenomyosis and had endo ablation. Still have some bleeding but nowhere as heavy as before. The pain in the low back and tingling in leg and foot made me see a back specialist. Pain meds did not do the trick. I was on Lyrica for a while and that helped with the numbness/tingling but not the pain. Eventually a new doctor said it was hip bursitis. When he pressed on my side, I nearly hit the roof. Some stretching exercises and some heavy duty anti inflammatories did the trick. He prescribe etodolac.
    Anonymous 42789 Replies
    • January 18, 2010
    • 10:55 PM
    • 0
    Flag this Response
  • I was just diagnosed with adenomyosis in August of 2010. I have been contending with this for 15 years, without actually knowing what it was. I just spoke to a neurologist and he states that when the womb is enlarged the pelvic nerves are being stretched, therefore pain may be felt down the leg and the lower back. I've also dealt with numbness and tingling in legs, as well.
    Anonymous 42789 Replies Flag this Response
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