So Frustrated!!! But any men may want to steer clear

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Freya
Regular Member


Date Joined Apr 2008
Total Posts : 164
   Posted 7/19/2008 11:19 PM (GMT -7)   
I've been seeing my pain doc for a while now. I do really like her and think she is a sincere woman who really does care about her patients.
But with that said I am completely frustrated with her inconsistancy.
She has been nice enough to prescribe me percocet on top of my regular timed release med for my periods. My cycles are so awful and painful they have put me in the ER, in a type of shock and generally very ill. At times it has taken the ER three doses of dilaudid to get the pain under control to the point where I could speak coherently without sobbing.
My doc is very stingy with the breakthrough meds. I'm never given any for more than my period, but even then she prescribes 10mg, 8!! hours apart and only 3 days worth which is a huge struggle.
So this month I forgot to call before the weekend so had to call her service today. I hated to do it but knew if I didnt I would risk having to call in the middle of the night and I would feel even worse doing that.
I apologized and told her I could feel my cycle coming on and that because I forgot to call I didnt know what to do. She said she would call something in for me. She said she may not be able to call in 20(which she doesnt give me anyway) and I said that that was okay, that her calling me in something was much appricited.
Well my husband gets home and I looked at the bottle. 1 pill every 6 hours with a total of 12. I couldnt believe it,  I am so afraid of having to feel this pain and feel completely unprepared. She has called me in 18 pills every 6 hours so I know its not that she could only call in 12.
I cant believe she would do this to me on a weekend when the only choice I have is to go to the ER if 1 pill doesnt cover the pain.
In the past she has allowed me to take 2 every 4 hours, then 2 every 6 hours and then 2 every 8 hours. Now its getting down to one.
I dont understand why she is so inconsistant. It leaves me anxious about what to expect every time I have to get brealthrough meds. And I just know judging from the pain that I have right now without having officially started yet I'm going to be in a bad situation.
 
Should I get a second opinion because she just cant prescribe consistantly? I really like her but I feel like she is leaving me in a dangerous situation as I really cant physically tolerate the pain. And because 10mg barely keeps me hanging on, the thought of 5mg is leaving me in a panic mad
 
Has anyone been in this sort of situation or has an opinion of what they would do if they were? And how can I keep myself out of the ER. My pain is so bad right now and I have taken one dose but didnt even have that to spare as I still havent officially begun my cycle but couldnt stand the pain its causing.
 
 
Thanks Freya
 
  In suffering, we are given the key to a door which most rarely 
      get to open.  Behind it lies the ultimate gift which is only visible
                             in our darkest hour.
                                True strength.


Dagger
Veteran Member


Date Joined Apr 2008
Total Posts : 1522
   Posted 7/19/2008 11:57 PM (GMT -7)   
Speaking from experience, this kind of pain during your period is NOT normal. Something is causing it and you need to know what it is.

Has your doctor attempted to find the cause of your pain? One possible cause is endometriosis, another is adenomyosis. Both of these can be treated. There are pelvic pain experts out there that can help.

The only thing I can suggest right now is a heating pad, this sometimes takes the edge off of pelvic pain.

Call your doctor back tomorrow and explain the math. Cutting down on your pain pills without doing anything else to help you does not work.

You have my sympathy.

Freya
Regular Member


Date Joined Apr 2008
Total Posts : 164
   Posted 7/20/2008 12:12 AM (GMT -7)   
Thank you so much , I have endo. It have treated it with Lupron and depot but have a heart condition that doesnt allow me to tolerate the hormones.
They cant remove the endo from where its located and no one will touch me for a hysto at the age I am without already having any children.
What makes my cycle that much worse is my other condition called Interstitial Cystitis. Its a condition where the lining of the bladder develops rips and tears in it so filling and voiding can be extreamly painful. They refuse to take bladders out anymore because in ever case ghost pain has remained.
They havent found a cure yet, but I know there busy trying to. Both the conditions play into eachother and make it so much worse for me this time of month.

I was thinking of calling her but am so afraid to. She told me a few times today to please remember to call during office hours. And I always do, I just got my days mixed up and thought Friday was actually Thursday so thought I had one more day left. I am nervous that if I call tomorrow she get frustrated with me. I always am so afraid to ask for what I need or "bother" my doc out of the office.
I need to get over that, quickly!

I hate being in this situation, where my only choice is medication. Taking pills only seems to remind me of the wall I'm backed into. But heck if I would ever say no to them at this point.
Its a love and hate relationship ya just cant get out of!

Thank you so much for your advice!
Freya
  In suffering, we are given the key to a door which most rarely 
      get to open.  Behind it lies the ultimate gift which is only visible
                             in our darkest hour.
                                True strength.


Dagger
Veteran Member


Date Joined Apr 2008
Total Posts : 1522
   Posted 7/20/2008 12:46 AM (GMT -7)   
There are some specialists that devote their practice to treating women with endo. They can surgically remove it from anywhere, or so I've been told. Unfortunately, getting insurance coverage for this type of surgery can be tough. I'm familiar with IC, and grateful that I don't have it. I know a few women with both endo and IC and don't know how they do it.

Hysterectomies don't always cure endo, especially if it's on organs other than your ovaries.

You will make it through this weekend, and you will feel better in a few days. I know that doesn't help much. I wish I had more to offer.

ryand
Veteran Member


Date Joined Dec 2007
Total Posts : 639
   Posted 7/20/2008 6:30 AM (GMT -7)   
Freya:

I am so sorry you are dealing with this. Is this an OB-GYN? I would encourage you to keep searching for a specialist in that field if you can. I know how frustrating this can be. I was in the same situation as you and also was told I was too young for a hysto, plus my insurance wouldn't cover it. BUT, after several referrals and many attempted "minimally invasive" treatments like Lupron I did end up with a doctor who did a hysto (and convinced my insurance it was medically necessary - which it was). In the mean time, I know you've probably tried every OTC med imaginable, but one thing that worked for me was to start loading up on naproxen sodium (Alleve) as soon as I felt things coming on. I still took percocet as well, but the percocet worked better if I was also taking the naproxen. Early on, my doc had given me prescription strength naproxen (it was called anaprox, I think), which was a higher dose than the OTC stuff, so I still take more than what the OTC version says you should - but I would check on the internet to see about what the 24 limit is.

Hope this helps a little bit. I'll be thinking of you!

tom inpain
Regular Member


Date Joined Jul 2008
Total Posts : 239
   Posted 7/20/2008 7:55 AM (GMT -7)   
taking Your advice and staying way clear
Tom Lasko


Freya
Regular Member


Date Joined Apr 2008
Total Posts : 164
   Posted 7/20/2008 9:33 AM (GMT -7)   
Thank you all so much for you advice. It helps alot to be able to vent about how frustrating this is. I had no idea that there were docs who devote there practice to treating endo, I will defenitly look into that, I'm thinking that the endo has begun to grow on my bladder and thats why things may be getting a ittle worse.
I defenitly need one of two things..to find someone who is skilled and willing to remove the endo no matter where it is or to get over there belief that I have to keep my ability to have children in tact no matter what the cost to me. Not everyone is ment to have children naturally, its just life.
I will defenitly look into naproxen. I want to say I've taken it before but years ago so I would be excited to see what it would do for me now!

Thank you all so much for your kind words. It helps to know I'm not alone, even if I cant get enough med.

Hugs Freya
'
LOL Tom!! Told ya!
  In suffering, we are given the key to a door which most rarely 
      get to open.  Behind it lies the ultimate gift which is only visible
                             in our darkest hour.
                                True strength.


Scarred_for_life
Veteran Member


Date Joined Jul 2008
Total Posts : 1559
   Posted 7/20/2008 10:34 AM (GMT -7)   
I am so sorry that you are going through this Freya. Its horrible that you have to join our little group. I too suffered long with painful periods when I was younger. God awful lower back pain that made me immobilized to do anything but cry. I was diagnosed with cancerous cells in my cervix in 1996 and went through a hyst at the age of 32. Having already had two children I did not need the baby factory any longer so doc went ahead and took it out and I was so grateful for the end of such painful periods that I almost danced about with joy.

I would think that a new OB/GYN is in order here to see if there is anything that they can do to ease the pain for you. It seems strange that a doc would not prescribe the meds that you need for your pain but then again 4 years ago my OB/GYN decided that I was in menopausal stage and prescribed Ambian so that I could get some sleep through the night sweats. Well it wasn't long before he quit with the Ambian and told me that I would have to live with the fact that I was getting older and that my sleep pattern was going to be wacky for the next 8 years.

The hot flashes have since became worse and its of course difficult to do a pap as my back does not tolerate the stirrups for long before it is completely screaming at me. So I have avoided the OB/GYN for the last 2 years and I think it is at last time to make an appointment. I am now what docs like to call Menopausal at 44 years of age. YAY!
HEALTH ISSUES: Herniated discs at S-1-L5, L5-L4, L4-L3. Two level fusion (2000); one level fusion (2002); Revision at L4-L3 (2003). Diagnosed with Failed Back Syndrome, Permanent Nerve damage and Chronic Pain

Medications:

Kadian, Lexipro, Percocet, Temazapim, Lunista, and Robaxin.


Dagger
Veteran Member


Date Joined Apr 2008
Total Posts : 1522
   Posted 7/20/2008 1:22 PM (GMT -7)   
The top doctors are in Maine, Oregon, and Georgia. They can remove endo from the bladder and anywhere else. There are great doctors elsewhere also. Check out the Endometroisis Research Center for more info on endo, treatments, and doctors. It sounds like you really need surgery to remove your endo, and you may not need a hyst to stop your pain. Having a hyst without removing all the other endo gives you a good 25% chance that some or all of the pain will return.

Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23426
   Posted 7/20/2008 2:10 PM (GMT -7)   
Freya, I don't have any words of wisdom but I can say I totally sympathize. I too had horribly horrendous monthly cramps too. I didn't have endo nor could they figure out why I was in so much pain every month. All I knew was that I was down for the count for at least 2 days with pain so severe that I would curl into a ball, cry or vomit from the pain. It go to be so bad that finally after seeing a GYN surgeon, he recommended I do the Novasure endometrial ablatation. I know that your insurance probably won't cover this either since it's a a form of sterilization - though women can still get pregnant after this but it is considered extremely dangerous. I have not had a period in 9 months and it has been heaven. No more period = no more pain at least for me. I agree that you need to find someone to help you because no woman should be in this amount of pain from their periods.
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shannon1
Regular Member


Date Joined Feb 2005
Total Posts : 369
   Posted 7/24/2008 4:54 PM (GMT -7)   
Hi Freya, i didn't see an update here, i hope u did ok???

I suffer from severe endo also. I have chronic ovarian cysts, and tons of other female issues. My periods are nuts, lasting for weeks at a time w/ severe pain, vomiting, ect.

I used anaprox also which actually helped alot, I had to stop it since i now have ulcerative colitis. I take darvocet for cramps now.

I have had my endo removed twice. One time it was so bad that it had growing into my csection scar, had grown onto my other organs and had attached my bowels to my stomach. Doc removed what he could at the time. The pain was better for a while, but ofcourse is comming back.

You should look into a good ob/gyn and also for a endo specialist, as the other posters mentioned. Even if they can't get it all, some is better than none in my book. Plus, if u do leave it, and u decide that u one day want children, it will make it that much harder to concieve, and u will likely need surgery then. (We suffered infertility for 3 yrs).

GL, i hope u did ok over the wkend.
2003, dx moderate UC
2000, dx selective IGA deficiency w/ anti IGA antibodies
2000, dx Antipholipid Antibody Syndrome
1999-current, chronic hemmoragic ovarian cysts, w/ partial ovary removal
1977, complete reconstruction of foot after lawnmower accident (chronic pain)
 
Meds
6mp 75mg, prednisone 40mg (just starting meds again)
percocet 5mg 3x day
potassium 3x day
 


Chutz
Veteran Member


Date Joined Jan 2005
Total Posts : 9090
   Posted 7/24/2008 5:27 PM (GMT -7)   
I will add another vote for getting a new doc. This one is not treating you with the respect and care you are paying for and deserve. If you live near a university/teaching hospital get there! Even if you have to make a bit of a drive it will be well worth it. They're not afraid to treat you.

One key to knowing if you have a good doc or not... you should never be afraid to call your doctor because of how they have acted toward you. If your doc makes you feel this way...run and don't look back.

Good luck and keep us posted.
Chutz
Co-Mod Fibromyalgia & Chronic Pain Forums
~~~
Fibromyalgia, Ulcerative Colitis, Insulin dependent diabetic, collapsed disk, dermatitis herpetiformus, osteo arthritis in spine and other locations.
***************

The only difference between genius and stupidity is that genius has it's limits. Albert Einstein: (1879-1955)


Morgoth
Regular Member


Date Joined May 2008
Total Posts : 177
   Posted 7/25/2008 7:31 PM (GMT -7)   
Freya,

If you're afraid to call your doctor, then you really should get another one. Doctors have chosen to dedicate their life to help those in pain (and not only during office hours). On top of that they get paid, and they get paid way more than a public servant whose lives are much more dangerous (hi Tom).

I'm not sure though if she's inconsistant; looks more to me like she's slowly taking you of percodet.

Maybe surgery is a solution here.

Take care and hang in there.
To stand and be still at the Birkenhead Drill is a mighty bullet to shew.

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