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so much pain - no relief so much pain - no relief

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  #1  
Unread 03-11-2004, 11:15 AM
so much pain - no relief

Hi ladies -

I am sooo frustrated right now. As some of you know, I have been in pain again for about 2 months. Went to my gyn, my primary and a GI guy - everything has been ruled out - not bladder or bowel problems, no infections -nothing. Now over the past 4 days, the pain is getting worse and feels like really really bad period cramps. The only difference is that when I cough or laugh or twist or walk or go over a bump when in the car, it feels like its jarring everything - only there ins't anything left to jar.

I talked to my GYN finally today (after calling for 2 days) and she says the only thing she can suggest is to go off the estrogen for a month and see how that goes. I asked how long I would have to be off it before I know if its going to work or not, and she said "I don't know - I haven't ever seen it work." HUH?? So I asked her why i would do that if she hadn't ever seen it work. She said she lacked any better answers. Lovely. I told her I had done what she suggested before, and its only getting worse, and that I was tired of being shuffled from doc to doc getting no answers and no relief. She basically couldn't be bothered.

Now, I have an appt with my PCP today. When I saw her last time, she told me she wanted me to quit smoking and take wellbutrin before she would refer me to a pain clinic. Well, I am on the wellbutrin but haven't quit smoking. I have no idea if I am going to get anywhere - if I don't, I guess its off to the ER.

Any other suggestions?

Thanks!
Jess
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  #2  
Unread 03-11-2004, 12:08 PM
so much pain - no relief

Jess,

Any chance your pain is the endo acting up again. There are a few ladies here who found that even a small amount of estrogen makes the endo grow again - YUK

Sometimes going off the estrogen works to help it die back. Some ladies go off estrogen, but add progestin or progesterone to help it die off.

While I agree you should stop smoking, your doc should not defer a referral on account of your smoking.

Dorrie
  #3  
Unread 03-11-2004, 12:22 PM
so much pain - no relief

Hi Jess

I had wondered how you were doing. Sounds like we're in about the same boat, except I have an appt. for a pain clinic but not until the end of April. Sigh. I completely understand your frustration. We go through treatment after treatment and finally a hyst in hopes of a better life, and yet, here we are on this road. My pain has been getting worse lately too, and I am very very close to going to see my PCP for some more pain meds. Actually anti inflammatories - Celebrex. I haven't taken it in awhile, as I hate taking drugs, but lately I just can't handle it. I was lying in bed crying yesterday, so decided it's time for some action. My gyn seems to think my pain is due to myofascial trigger points and that is why he has reffered me to the pain guys. Hopefully they will have an idea, and a solution. In the meantime, I would say keep pushing, and Dorrie is right, you shouldn't be denied a referral because you smoke. It is really hard to quit smoking (never been there so I don't even truly know HOW hard), and you are dealing with enough right now, it seems a little unreasonable to expect you to do that right now as well. Get the pain under control, then maybe think about quitting. One thing at a time. If all else fails, go to the ER. Do whatever you have to. You shouldn't have to suffer.
Good luck, keep us posted. Know that you're not alone.
Great big 's
Shelley
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  #4  
Unread 03-12-2004, 08:22 AM
so much pain - no relief

I am so sorry for all of us that are on this road. I too have returned down the road of pain and am so tired of it.

I finally decided last night to call the insurance company directly and have them give me the name of a uro/gyn as I am having bladder issues along with the return of the infamous endo pain where my remaining ovary is. This past week the pain has not been disabilitating, it felt like I was having menstrual cramps, I don't have a uterus so what could be causing that cramping feeling in there.

My gyn told me to have my thryroid checked by my PCP which I have done and am waiting for the test results to come back and to go to a urologist for my bladder issues, well the urologist that I saw before my hyst said I had kidney stones and was ready to do outpatient surgery to remove them. I am not going back there.

If my thyroid tests come back and show that is part of my problem I will find an endocrinologist but am still going to search for a uro/gyn as I am tired of being shuffled around and really feel that my bladder is either damaged, prolapsed and the endo has come back. I just want to feel as good as I did for the 5 months after surgery. I never felt better and now, its just like before hyst but not quite as bad and I know it will get worse just like it did before, I am 36 years old and some days feel like I should be 76. I am tired of having to run to the bathroom and yesterday had to stop at a rest stop on my way home from work because I didn't even feel the urge to go but could feel it coming out and there was no stopping it. I am done!!!!!

just wanted to add a comment about smoking, I smoke also and was told that I am borderline emphyzema. Was put on wellbutrin and it didn't help, in fact I wanted to kill someone while I was taking it. How can I stop smoking when I am trying to address these other issues????
jody
  #5  
Unread 03-12-2004, 09:14 AM
so much pain - no relief

Good morning fellow endo sisters:

Just wanted to pop in and say that I can identify with what you all are saying. I too felt TERRIFIC, never better, for a few months after my hyst. Then, the pain found me again.

Finally, an answer for me. Zoloft. Actually only 25mg of it is doing the trick for me. I am still having some pain off and on, but now I don't get stressed about it. In fact, I can't seem to get stressed about anything. I start to "go there" but I can't seem to pull it off. Weird, but nice. : ) I feel like a princess again instead of feeling like the girl whose trapped in the dungeon.

I really do think that the stress of being in pain with little hope of a definite cure was making the pain worse. So, now that I am not dwelling on it, I am feeling less pain and am overall feeling better ... terrific, in fact, in terms of mood.

I noticed that a couple of you tried Welbutrin. From what I understand I am very lucky to have found the right antidepressant on the first go and that it worked so quickly for me. Sometimes you have to try different ones and different doses to feel better and I understand it may take weeks to feel better.

As for me, I hope this lasts.

s for all!!!
  #6  
Unread 03-12-2004, 02:03 PM
so much pain - no relief

Michelle

That's really great news that you are finally feeling terrific again. I guess you got over the nausea? I'm so happy that you have found something to make things a little easier for you. I'm sure there is hope for all of us.
Shelley
  #7  
Unread 03-12-2004, 02:49 PM
so much pain - no relief

Shelley:

Thank you, yes, I am over the nausea. Decided (doctor knows) to continue with the 25mg, rather than upping to 50mg. I will go in for a visit on the 30th to discuss it in more detail with him. Right now, it looks like he's fixed me up ((((again)))).

Hey, of course, there is hope for all of us! I am a firm believer that what doesn't kill us only makes us stronger.

Having great support here has been a tremendous blessing for me. Given that, I will probably hang around for awhile and offer what support I can.
  #8  
Unread 03-12-2004, 02:55 PM
so much pain - no relief

Michelle,

You are truly an inspiration to all of us here. I am like you and many here, I could not make it without all the support from the women on this website!!!!

jody
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