Endo is possibly back, very frustrated! Lots of hip pain, abdominal pain. Very Sad | HysterSisters
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Endo is possibly back, very frustrated! Lots of hip pain, abdominal pain. Very Sad Endo is possibly back, very frustrated! Lots of hip pain, abdominal pain. Very Sad

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  #1  
Unread 11-12-2010, 02:02 PM
Endo is possibly back, very frustrated! Lots of hip pain, abdominal pain. Very Sad

Hello,
I am having one hell of a time! I am in so much pain, and don't feel as tho there is any help on the way. I had a hystorectomy in 06/2008 and bilateral oophorectomy in 11/2008. Since then I have been relativly pain free until about 3 months ago. I started to get a pain in my lower right front abdomin. My Dr. thought it might have been my appendix. A CT scan showed no abnomalities. The pain has gotten much worse, and has moved into my hips, and what feels like my siatic nerve. I am excutiating pain all the time. It hurts to walk, it hurts to sit, stand, laydown. I talked with my Aunt who was an OB/GYN nurse for 25 years, and she said most likley it is the endo coming back, because I am on HRT it is likley feeding the endo and causing it to come back. I am also having sever bladder problems, burning, frequency, ect. and have been told it may be IC or Endo on my bladder.

I don't trust the Dr. who preformed my previous surguries, and can't find a Dr. who is willing to help because of my previouse surguries. My Dr. is going to refer me to UCLA which is about 4 hours away from where I live, in order to find a Dr. who is willing to help me. I was hoping to find a Urogynocologist, but unfortunatly there isn't one around in my area.

I have been crying none stop, I am so emotional, I feel that there just isn't a solution for me. Feeliong very helpless and hopless right now. One Dr, told my GP to have me go off of the HRT, this is not an option for me. I went through hell trying to get my hormones leveled out. After my ovaries came out I started to get really bad migraine headaches, and have had that under control for awhile now, since I got my hormones straightened out. If anyone has any helpful advice I would love to hear it! I can't live like this.
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  #2  
Unread 11-14-2010, 09:02 AM
Re: Endo is possibly back, very frustrated! Lots of hip pain, abdominal pain. Very Sa

leed2501

I am so sorry to hear about everything you are dealing with. I had my lavh/bso a few years ago. But more recently received an IC diagnosis.

If I were in your shoes, I would try to find an endometriosis specialist. It wasnt until I went to mine that I got a referral to a uro/gyn which lead to the IC dx.

I really hope you can find a doctor that can help you. Please let us know what you find out.

:bunnyhug:
  #3  
Unread 11-14-2010, 11:41 AM
Re: Endo is possibly back, very frustrated! Lots of hip pain, abdominal pain. Very Sa

I feel so very sorry for you. I felt like I was reading about myself minus the hysterectomy. I am scheduled to go beg. of January. I have pain everywhere you stated and then some. I can barely even walk at this point. I am getting everything out also and I am seeing an endo specialist. For your situation, I wonder if it is the HRT or just that it wasn't removed fully the first time and it took all this time to come back full force? It is such a depressing disease to have. Truly no one that does not have this fully understands. You could be so detailed in explaining it to them. Your stomach could look like you are just about to deliver a baby. You could be hobbling along because you can't even walk and still people do not believe you are in pain. At least that is what I am experiencing. My own family members try to be supportive but don't even realize the extent of the pain. My husband is just starting to get it and is helping me out so much more. I wish you the best of luck. I do hope you find a doctor that can fully help you.
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  #4  
Unread 11-14-2010, 05:39 PM
Re: Endo is possibly back, very frustrated! Lots of hip pain, abdominal pain. Very Sa

Thank you for responding! I am feeling a little better emotionally today, but I am still in so much pain! I am going to a new gyn tomorrow and hopefully I will be going to UCLA soon. I will let you all know how it goes, thanks again for responding!
  #5  
Unread 11-14-2010, 05:49 PM
Re: Endo is possibly back, very frustrated! Lots of hip pain, abdominal pain. Very Sa

You sound like me!!! I know how frustrating it can be but there is an answer for you. I am glad you are going to UCLA. Tell them everything and explain what your life is like. My docs didn't get it until a)went to super specialists who still questioned it and b) got so sick they had to retest and guess what I have ulcerative colitis. Am being checked out for return of endo and pain sounds like yours. I know it is so hard and here is a suggestion I totally said no til about two months ago. Pain clinic. Try to get to one because believe me, they have seen it, treated it and helped it. I hope you feel better because believe me I was where you were about September. Unfortunately am going backwards again. I also think endo is back and am praying every day it isn't. Sending hugs to just support you in this struggle.
  #6  
Unread 11-14-2010, 05:58 PM
Re: Endo is possibly back, very frustrated! Lots of hip pain, abdominal pain. Very Sa

leed2501--I also have extreme hip pain. Started in left hip about 18 months ago. Went through MRI's, ct scans, xrays, and all kinds of different nerve pills. Nothing has helped and has started in right hip. Never occured to me it could be endo until I happened on this site and seen other women with the same probs. Wish we had a urogyn around here...that would certainly kill 2 birds with 1 stone!! Hoping the hyst alleviates some of the pain. Might try to go see a more specified specialist(is there such a thing )
You are not alone in your quest to find answers and relief!
  #7  
Unread 11-14-2010, 10:10 PM
Re: Endo is possibly back, very frustrated! Lots of hip pain, abdominal pain. Very Sa

Sorry to hear You ladies are suffering too! But so nice to know I am not alone. I Should be going to pain management this week, just waiting for a referal to go through . Thanks!
  #8  
Unread 11-15-2010, 12:40 PM
Re: Endo is possibly back, very frustrated! Lots of hip pain, abdominal pain. Very Sa

Best of luck getting the referal. If you can, let us know how you made out. Thanks!!
  #9  
Unread 11-15-2010, 07:08 PM
Re: Endo is possibly back, very frustrated! Lots of hip pain, abdominal pain. Very Sa

Good luck with everything. My pain doc is wonderful and has helped me so much over the past month and a half. Sending hugs that you feel better
  #10  
Unread 11-15-2010, 11:26 PM
Re: Endo is possibly back, very frustrated! Lots of hip pain, abdominal pain. Very Sa

I can relate to the hip pain! I have endo also. I have had a hyst about 4 wks ago. I thought I was crazy bc of the hip pain but come to find out the endo had attacked the nerve in my hip. Just a thought maybe you can ask your doc. I hope it gets better and they can help you with some relief
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