CHIARI MALFORMATION
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I am losing my mind! Anyone have Endometriosis?
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by DechenDolkar, Nov 13, 2012
I feel like I am losing my mind and I just really need some support from people who understand what chronic daily pain and anxiety feels like. I suffer daily with this Chiari head and I am fearfully contemplating surgery as my neurosurgeon feels it would be helpful. To add more crap to the already spoiled stew I have been having right sided pelvic pain for over a year which is progressively getting worse. Ovulation and menstruation is unbearable but it hurts all the time. My doctor feels that I have endometriosis and gave me the options of surgery, depoprovera injections, or progesterone pills. She wants me to discuss these options with my neurologist and neurosurgeon as I am her only patient who has a Chiari Malformation. I am not happy with any of these options. I already feel so unstable and I fear those medications would push me over the edge mentally and surgery seems useless because if it is there and removed it can come back. I don't mean to put so much negativity out there, I just hurt and feel filled with frustration. I am seeing my GI next week to just rule out any problems in that regard but at this point endometriosis makes the most sense.

Do any of you have endometriosis and how are you dealing with it. What have you tried and what were your experiences? I would really appreciate hearing from you! Thank you so much!
Member Comments (13)
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by linnielou232, Nov 13, 2012
I don't have this issue, but just read your post and my heart goes out to you.  I know dealing with Chari alone is enough and now you have this to deal with.  Just wanted to let you know I'm thinking and hoping the best for you.  Wishing you a more pain free day.  Which I know is a difficult thing to ask for.
Linda ;)
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by DechenDolkar, Nov 13, 2012
Thank you, Linda! I really appreciate your reply.

I hope tomorrow will be better. Although, my hopes really just seem like useless wishes.
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by selmaSBlank, Nov 13, 2012

  Hi....I truly felt I had this, and I have a cousin and 2 sisters that were dx'd and treated for it...in researching my current dx of EDS I found endometriosis is related to EDS...

I was completely brushed off my drs and told I was pre menopausal....and there was no need to look further...well I was done with menopause b4 I was 40....so I was not happy as I started going to Drs in my early 30's wanting another child....I am not sure, but I also feel my dx of Hashimoto's also played a role in this as well....

Push for answers....as it is not right and I do not want to see neone else go thru what I did....

  Find out if u have EDS and see about the endometriosis....

Keep us posted : )  ((hugs))
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by DechenDolkar, Nov 13, 2012
Thank you, Selma. I will discuss EDS with my doctor.

I am sorry you had to deal with all of that. I really think if these doctors spent a little more time listening to their patients they would be much more educated and qualified to treat us.

Did your endometriosis symptoms go away after menopause?
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by Viva001, Nov 13, 2012
I'm sorry for what you are enduring.  I was never Dxd w/endometriosis--they didn't use to check for that--but I always had severely painful menstrual cramps (to the point of vomiting).  To add insult to injury, I also have menopause from hell.

I have to believe that Chiari is implicated in both; it can affect everything, including hormones.

If you're committed to Chiari surgery, you *may* find that your hormonal state improves.  I hope so.
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by selmaSBlank, Nov 13, 2012

  Yes, they did, but it did leave me with only one child...I am not complaining, I feel blessed to have her, but if they had listened I may have been able to have another one....who knows....

I also did not appreciate the pamphlets on menopause as they said just bcuz u have menopause it does not mean u should retire to a rocking chair...I was in my late 30's.....and very frustrated.

I forgot to mention I also have a tilted pelvis...not sure if that plays a role in ne of this...but it is an EDS thing too I believe....

Yes, chiari can affect hormones in that it can affect all aspects of our very being...and our pituitary gland can get compressed....especially when there is so much inflammation and even excess CSF can add to it.

  Let us know what u find out
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by DechenDolkar, Nov 14, 2012
Viva - Thank you for your reply. I am sorry to hear that you are having such an awful time with menopause. That is definitely something I fear. I hope you feel better!

Selma - That is heartbreaking, you have been through so much. I have one child as well, an amazing son! It took a long time to get pregnant and I did want to have another child but I had a devastating MS attack and was warned not to continue trying. After several years went by and I didn't have another attack I wanted to try again and my headaches became severe and I found out I had Chiari and again the doctors warned against trying to get pregnant and at that point I was fearful as well.  At least I did it right the first time and I have such a wonderful boy who keeps my life worth living.

I also have a tilted pelvis. So much to piece together!
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by Viva001, Nov 14, 2012
I'm heartened that people are getting Dxd early.  (16 yr for me).  Sometimes it is up to us to put the pieces together though.

Sometimes I feel like this is all some kind of sick joke; how could this condition wreak so much havoc?

I'm glad that you were able to have your DS.  Take good care of yourself so that you can take good care of him.
& keep us posted.
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by selmaSBlank, Nov 14, 2012

Thanks...it took me a little over 5 yrs to conceive....no explanations.....

Not sure if I remembered u saying u had MS....was that a confirmed DX?
Goodness I know we have had a few members with both and some that were misdx'd with MS to find later it was Chiari not MS.....

  The tilted pelvis is an interesting puzzle piece....wonder how many others have had this too?