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Desperate and need HELP! Desperate and need HELP!

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  #11  
Unread 03-04-2005, 02:07 AM
Desperate and need HELP!

Hi Kelly,

Sorry to hear about your pain. I empathize with you.

The suggestion of seeing a therapist is actually a good one. Here's why...October 2003 I just couldn't go to work one more day! I had started having horrible anxiety attacks. Several times I felt as though I were having a heart attack. I was restless. As a teacher, I felt "trapped" in my classroom and couldn't even breathe.

I've had migraines since a car accident when I was 14. The pain had increased so much that I was literally eating lortabs (7.5/500 mg tablets) 2 at a time. I would wait until my lunch time to take the meds, so my mornings were really a blur. Then at night, I'd come home and take 2 more and 2 more before bedtime.

At the same time, I had pain on my lower right side. Having been diagnosed with endometriosis at age 27, I asked---no, begged my ob/gyn for help. She kept changing birth control pills, and estrogen, and diet, and telling me that my pain couldn't be THAT bad. But, it was.

The night before our last day before fall break, my son had an appointment with his psychaitrist. I finally got up enough courage to talk to her about what was going on with me. She immediately put me on something for the anxiety and changed the anti depression pills I was taking. She also wrote a short letter to my employer stating that I could not return to work due to anxiety/stress related issues as well as Post Traumatic Stress Disorder until she released me. Relief washed over me.

There was this cycle of pain, pain pills (prescribed by a PM doctor in June 2002), insomnia, exhaustion, pain, more pills, more insomnia, more exhaustion, ect.

She told me to see a therapist and between the two of them, they would help me through whatever was going on and fill out the necessary paperwork for Social Security disability and my State disability. When I went down to SS, they told me I would know if I would qualify for benefits in 8-12 weeks. I had a response of "yes, you qualify" in 4 weeks! After that, I put in the paperwork for my work benefits through the State. They went through just as quickly.

So, my point in this rather long response is...perhaps the therapist can be used so you qualify for disability. It's obvious after reading your query, that you are unable to work due to dibilitating pain. You will need statements by your gyn and pehaps family doctor. It's worth a try.

By the way...I had a SAH/BSO on 24th of January 2005. I have gone from having 3-4 horrible migraine headaches each week to 1 regular headache every 2 weeks. My depression has lifted and I can't remember when I've felt this good.

Lotz of 's.....katie
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  #12  
Unread 03-04-2005, 02:38 AM
Desperate and need HELP!

KAYANN,
TWO THUNMBS UP FOR YOU ,YOU ARE SO RIGHTON THE MONEY

AND TO KELLY,SHE IS SO RIGHT ABOUT USING THE SHRINK TO YOUR ADVANTAGE. IM NOT AS YOUNG AS YOU BUT A TOTAL HYST 1 YEAR A GO WAS DOING BETTER BUT STOPPED WORKED 1/19 THE PAIN IS BACK INCREASING STEADY. IM A SINGLE MOM,......IM LEARNING SOMTIMES YOU HAVE TO TEACH THE DOC A THING OR TWO AS FAR AS DISABILITY, ETC.FIND OUT WHAT IS NEEDED FROM THEM N ASK THEM FOR IT. I KNOW TH STRESS AND THE GUILT ALL TOO WELL AND IM ALSO LEARNING THAT IF I DONT ADRESS THEM THEY CAN BE ALMOST WORSE AND JUST AS DESTRUCTIVE AS THE PAIN HANG IN THERE JUST KEEP COMING BACK TO THIS SITE LIKE I DO IT HELPS
THANK GOD FOR THIS SITE!!!!!!
  #13  
Unread 03-04-2005, 10:30 AM
Desperate and need HELP!

Dear Murffy,

Although I am still in constant pain since my TAH/BSO, it is MUCH better than before and I owe this to getting completely away from the doctors who did the surgery and first treated me for complications and going to some new doctors. When I got to "fresh eyes" at another facility they diagnosed my pain as pudendal nerve damage. This is quite common in hysterectomy but it is not often not recognized or understood. "Old school" medicine didn't teach the gyns about all the branches of the pudendal nerve and how those are connected to our female parts. For me, the pain is managed with Neurontin which helps with the inflammation of the nerves. I don't like taking it at all and am on the lowest dose possible, but if I don't take it, besides the pain, my foot drops and I trip all the time.

Also, you didn't mention whether or not you are on hormone replacement therapy, but if not, you might want to consider this. I'm not talking about estrogen; the ovaries make many other hormones and chemicals, some that help with pain and inflammation. I'm on naturally compounded, bio-identical hormones and I can't begin to tell you how much these have helped in so many ways. Our bodies need the chemicals the ovaries produced to properly function in so many ways. The best kind of doctor to see for this is, in my opinion, a reproductive endocrinologist. This kind of doctor specializes in the chemicals and hormones produced by the ovaries.

As for income, I totally understand how you feel. I still can't work since my surgery and it's been a real problem for me too. But before you can think about that you need to find a doctor who can help you get some relief. I would strongly urge you get out of your immediate area to some new doctors that don't know, associate or socialize with your current doctors. When you go, don't give the names of your other doctors until you have the new doctor's "fresh" diagnosis.

Also, I recommend getting a copy of the book, "The Hysterectomy Hoax" by Dr. Stanley West and once you are familiar with the anatomy and interactions explained in the book, you will be able to discuss your situation with your doctors better. My first set of doctors all tried to tell me it was "all in my head" but after I started researching, I went to doctors who were more updated. Now I hear, "It's definitely NOT in your head" and I am getting help, not prescriptions for anti-depressants. I can't tell you how healing it is to have doctors validate you instead of treating you like your a mental case!

Hang in there, it will get better.

Good luck,
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  #14  
Unread 03-07-2005, 08:28 AM
Desperate and need HELP!

((Kelly)))) I know exactly what you’re going thru!!! I am 25 and have SAME problems. I really hate that you have to deal with this awful stuff, but I am so thankful I read your post. Finally someone my age who is dealing with same things I’m dealing with. I had my TAH/BSO in Feb of ’03 due to a long history of endo (I’ve been dealing with the dreadful disease since I was15 and am still having problems. I’m in pain pretty much constantly and some how am managing to work during all of this (luckily I have my own office so I can shut the door and curl up in a ball in the floor and cry b/c the pain is so bad periodically thru out the day). I have lost jobs in the past due to absences b/c of endo. And completely understand your financial issues as well, I still have loads of dr bills that I’m paying slowly but surely. Today I’m going to a chronic pelvic pain doc and really hope something good comes out of it. Like many others I am not going back to the doc that did my surgery, b/c I’ve experienced pelvic pain for the past year and they have been no help at all. I have been taking darvocets for pain and that’s a joke, it’s like taking Tylenol.
Keep us updated on your condition. I would like to keep in touch with you b/c it’s not common (for me at least) to find someone as young as we are dealing with the same thing. Just know that you are not alone and I know how you feel, as many other do on this wonderful site. I agree this website is one of the best support systems. A lot of times we go thru life in and out of dr offices, on and off pain meds and no one will give us a straight answer and we feel like we are the only one dealing with this dreadful disease. I am so thankful for this site, I know I’m not alone dealing with this and the women on this site honestly care, I don’t know what I would do w/o hystersisters.

  #15  
Unread 03-07-2005, 09:00 AM
Desperate and need HELP!

(((Kelly))):

I just want to make a comment about the recommendation to see a therapist. I've lived with chronic pain for a number of years, both nerve pain from three herniated discs (now disintegrated ) in my neck and also from adhesions that cause periodic bowel obstructions.

What I've found is that the anti-depressants help with the nerve pain, enabling me to do well on less medication; this was proved when my insurer would only approve the generic and it didn't work as well as the brand-name. Therapists have helped me learn to adapt my life so that I can continue to live rather than just exist. I've found a lot of my ability to deal with the chronic pain has come from what I've learned with therapy, medication, and meditation. No, it doesn't eliminate the pain, but in my case the pain never will go away, even with surgery -- the nerves in my arm are too damaged. So my task was then to learn to live around the pain, instead of living in the pain.

I had severe, stage IV endo at the time of my surgery. I am sooo used to the popping of pain pills just to function on an every day basis! I lived like that for years. But please, don't think that your doctors' recommendation for therapy means that they think "it's all in your head." They may be trying to help you develop coping skills, which really do make a huge difference in how you feel day to day.



Audrey
  #16  
Unread 03-07-2005, 01:07 PM
Desperate and need HELP!

  Quote:
Originally posted by casi
[BToday I’m going to a chronic pelvic pain doc and really hope something good comes out of it. [/b]
Casi,

Please let us know how your appt went with the specialist.
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