Finally referred to UCSF...

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Regular Member

Date Joined May 2010
Total Posts : 40
   Posted 5/27/2010 4:27 PM (GMT -6)   
Hello everyone!!!!  How are you all doing?  How is your pain level today?  Try and hang in there!  I know that it is difficult! 
I am having a very hard time.  The last few months have been especially challenging.  As some of you know through my previous posts on this forum, the doctors have been treating me for chronic pelvic pain for the past couple of years.  The specialist that has been treating me just informed me a few weeks ago that now she isn't sure I have pelvic pain.  She doesn't know what I have.  My MD finally got approval for me to be seen outside of Kaiser.  I have an appt at UCSF in a few weeks.  I am very frustrated and am in a difficult place right now because I am in so much pain.  I currently work 4 days a week and I can hardly do it.  I have severe depression and I just feel so exhausted all of the time.  I don't know if they are ever going to figure out what is wrong with me.  I have seen so many specialists and they have done so many tests on me that I don't really know what more they can do.  It seems like a lot of people on this forum have gone through something similar?  It seems like it takes a long time for doctors come up with a diagnosis.  My question is this, what if they never find out the actual cause of my pain?  Has that happened to anyone?  If that is the case, do they just treat the pain?  How does that all work out?  Any advice you can give me would be so helpful.  I am really hurting very badly and can hardly stand the thought of having this the rest of my life.

Veteran Member

Date Joined Aug 2008
Total Posts : 3193
   Posted 5/27/2010 8:29 PM (GMT -6)   

Hey... I only have a minute on here right now, but I'm glad you got a referral to UCSF. I'm currently being seen there (for me/the babies) and it's a fantastic place. I hope they can get to the bottom of what's going on with you. I know going through all the testing and such is not fun; but I think it will be worth it for you to get a solid diagnosis. Because UCSF is a teaching facility, you get lots of people seeing you and a "team approach" to getting a diagnosis.

I know it's hard dealing w/ the constant pain, not knowing exactly what you are dealing with and the depression that goes with all that... hang in there. I hope and pray you figure out what's going on.

Main Health Problems: Dysautonomia/POTS; CFS/Fibromyalgia; Severe Chronic Hypertension; Hypothyroidism; Hypoadrenalism; Mixed (Obstructive/Central) Sleep Apnea - on Auto BiPap; Depression/Anxiety; Severe Vitamin D Deficiency

Pain Issues: Cervical/Thoracic back pain (they called it DDD...but I don't know); migraines; carpal tunnel syndrome; widespread joint/muscle pain, nerve pain in hands/arms/feet; Future Plans: Intrathecal Pain Pump; already completed trial (Sept, 2008); awaiting my decision for implantation...

Veteran Member

Date Joined Jan 2010
Total Posts : 1097
   Posted 5/28/2010 10:05 AM (GMT -6)   
Hi Stephanie,

I'm so happy to hear you have an appointment at UCSF - perhaps with a multi-disciplinary team, they'll finally be able to find answers for you.

I have been suffering from chronic pelvic pain for a number of years now....and to be honest, my doctors still can't say with 100% certainty what the problem is. They "think" it's permanent muscle damage in the pelvic area, due to a host of issues. They can feel knots of muscle and trigger points in the pelvic area, and I can also feel those knots directly on my abdominal wall, but the doctors also know my hip problems could be contributing to the problem as well. So, they've told me several things my pelvic pain "could be", but they refuse to commit to any one particular disorder.

So, what I'm really saying is sometimes, what presents as pelvic pain might actually be something else, and you need to keep an open mind about what could be causing the pain. I only know that without the medications I'm on, my pelvic pain has me walking in circles and crying in pain, just praying for relief. I've done everything you can think of to relieve it - massage, exercise, pelvic floor physio, drugs, etc - with no cure. I do get pain relief with the combination of drugs I'm on, but I'd like to be cured of this completely if possible).

Hang in there Stephanie and don't be afraid to ask your doctors questions. Try to be as clear as possible in describing your pain and the things that make it worse. I will keep you in my prayers, that answers will be found and you can be pain free. If you ever want to chat directly about this, just click the envelope by my name to email me.

Conditions: Fibromyalgia, Severe Myofascial Pain, Chronic Pelvic Pain (with permanent muscle damage), Femoralacetabular Impingement (CAM and Pincer), Reynauds, IBS, Surgical Adhesions, Ophthalmic Migraines, Severe Hot Flashes (both Surgical Menopause and medication related), plus physically unable to vomit due to the Nissen, and I have extremely tiny veins with a lot of scar tissue...a joy when it comes to having to give blood or get an IV started

Surgeries: Appendix, Uterus, Nissen Fundoplication for GERD, Left Ovary, Gallbladder, Right Ovary, TVT

Medications: Oxycontin, Cesamet, Tramacet, Cymbalta, Flexeril and Clonidine plus Laxaday, Vitamin D and a Multi-Vitamin daily

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