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Pain is Unbearable - Please Help Pain is Unbearable - Please Help

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  #1  
Unread 05-15-2005, 07:14 PM
Pain is Unbearable - Please Help

I haven't posted in some time. Not that things are great mind you, it's actually been life consuming. The PAIN that it.

To begin with I had a SAH back in Feb of '04 keeping my oraries due to major case of Endo. Pain came back within 4 months and con't to get worse. By The holidays last year I was experiencing extreme lower back pain. Thought I threw my back out but couldn't think of what I did to do it. Just woke up one day and couldn't move, literally. The back pain could be tempered with meds but had been constant along with pelvic pain that's worse after going to the bathroom. By Jan this year the pain in pelvis, pain after bathroom visits and lower right back pain are excruciating. Dr. scheduled a exploritory Lap for March. He ended up removing a multitude of endo and adhesions. Were they missed the year before or were they new?!, he didn't know but thought it would do the job and I would feel better. Guess again... The pain is worse than ever so six weeks ago Dr. gives me a shot of estrogen blocker. Suppose to be a cure-all for Endo sufferers. Not this Endo sufferer. Pain is getting to the point that I can't stand up straight at times, can't sit for long, can't walk for long, can't do much of anything at all. And pain meds are not touching the pain and I've tried a pharmacy of meds. Dr. wanted me to wait six weeks to call and tell him how I was doing. That will be tomorrow. Believe me, I will be on the phone first thing tomorrow morning.

Anyone out there experience this kind of pain? This much agony? Have any idea what is causing it? I'm afraid Dr. will throw his hands up. HELP!
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  #2  
Unread 05-15-2005, 07:53 PM
Pain is Unbearable - Please Help

Hi Carolynri,

I am in the same boat. I have already called my dr and waiting for her return call. I too am searching for relief. I am beginning to think there isn't any out there. I had my surgery in Dec. 03 as preventive to ovarian cancerand breast cancer. Preventive of what is what I am thinking now. I also had a diagnostic lap in July 04 and my dr found extensive adhesions. I know they are back but she isn't convinced. I know every time they go in there is always a greater chance of getting more adhesions. I guess that is what we get for "healing to quickly". I am going to go in with the latest and greatest adhesion material (once I find it) and beg for some relief. You are lucky you can do pain meds, I am severly allergic to all of them, I can't! I wish I could. I never had pain or any issues prior to my hyst/ooph but I am sure paying the price now. I wish you didn't have to go through this. There are a lot of us on this forum who suffer with the same thing. I am so regretting my surgeries. I wish the could put evrything back and maybe I wouldn't be going through this. My dr is great, she has had a hyst as well so you think she would have some good advice or plans. She is just as confused as all of us. She is one of the lucky ones who hasn't had to deal. May be tomorrow will be good news for both of us s to you and hang in there. I feel your pain. I just wish it would go away!
  #3  
Unread 05-15-2005, 08:02 PM
Pain is Unbearable - Please Help

Oh ((((((sweetie))))) I'm so sorry you're in so much pain While I do not have experience with either endo nor adhesions, way too many of our members are dealing with these monsters I've seen a lot of post and you may get some insight just from doing a search on "endo" and on "adhesions".

Furthermore, here's a link to our Resources Database:

Adhesion Resources

Endo/Adeno Resources

One thing I've learned is that having surgery to remove adhesions can turn into a vicious cycle of creating even more, sometimes a whole lot more painful, adhesions Where Endo is concerned, I've seen where endo can produce it's own estrogen, often leading to even more problems and pain. That's why some of our members have turned to pain management in order to deal with their pain. Pain management often involves a multi-disciplinary approach where as there is as much effort in finding the source and cause of the pain and in finding a cure as there is in finding the most adequate pain relief. One thing to keep in mind: where you're in, your body is concentrating on dealing with the pain and it can't focus on healing. When the pain is managed, the body's energy refocuses.

Here's a link to our Chronic pain Resources

Sending lots of s your way and hoping that you find some relief, soon.
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  #4  
Unread 05-16-2005, 09:36 AM
Pain is Unbearable - Please Help

Carolyn:

Do you still have your ovaries? Whether you do or don't, I suggest consulting a specialist in the treatment of endometriosis. Ask your gyn for a referral, especially if he seems to you to not be knowledgable enough to continue your care. Only you can choose the right doctor for you. Might be your current gyn and might be someone else.

If you had a lupron injection, your doctor should have told you that your symptoms would flare (get worse) before they got better. That timetable is an individual thing and probably why your doctor said to call in 6 weeks. He was probably hoping that in 6 weeks that your symptoms would be better.

Lupron is no cure all. It does work for some and not for others. For some the side effects are really bad and for some they are tolerable. Very individual.

I truly hope you find a path to wellness and a pain free life, soon!!!

  #5  
Unread 05-16-2005, 10:21 AM
Pain is Unbearable - Please Help

Michelle, Thanks for your advise. I do have my oraries. Apparently they looked okay enought to keep back in March when I had the lop done.

No, dr did not tell me about lupron causing symtoms to get worse before they get better. Prior to my hysterectomy in 04 I had had three injections of lupron over a five year period with no adverse symtoms but then again I still had a uterus back then.

I'll see my gyn this morning. He does specialize in endo. That's one reason I chose him.

Can you tell me why you are taking estrogen if you still have your ovaries and is it helping relieve pain?
  #6  
Unread 05-16-2005, 11:46 AM
Pain is Unbearable - Please Help

I am on Synarel which is like Lupron only its a nasal spray taken twice daily instead of an injection. The estrone is an add back therapy to control hot flashes and help prevent bone loss. I'm small boned to begin with and this is round 3 of Synarel and my doc is worried about my bones.

So, you've had Lupron before ...did it work before? Are you on the 3 month injection or the 1 month?

Sounds like you are in good hands. I doubt he'll write you off. Let us know how the appt goes.

  #7  
Unread 05-16-2005, 03:29 PM
Pain is Unbearable - Please Help

I have a question all the symptoms you have described I have. I told my gyn and he sent me to a gi dr. This dr. asked me about my symptoms and when I suggested adhesions, he asked what kind of adhesions was I talking about? So he did a colonscopy. Found nothing. Thinks it's just irratible bowel. My question is could he tell from the colonoscopy if I have adhesions. I guess I will go back to my gyn. He too has dismissed my adhesions theory. I am still in pain with each bm. I feel it move through my entire intestines. Any ideas what to do next.
  #8  
Unread 05-16-2005, 09:10 PM
Pain is Unbearable - Please Help

I just got back from the dr. who is now telling me that if the Lupron didn't help after six weeks than my pain is not gyn related and I somewhat believe what he is saying since the Lypron worked in the past. So I ask him what else it could be that's causing this excruciating pain and he said it was either the kidney or the bowels. He then sent me for a CT scan of my right kidney. I have a history of kidney stones in my right kidney and his thought now is that a stone has formed. I would believe it's possible because of the amount of pain but just five months ago I had a panel of urinary tests that ruled out stones among other things. I should hear hopefully tomorrow about the CT scan results. If it turns out there are no kndney stones then we look at the bowels. Again, within the last year I too have had a colonscopy that showed nothing but the dr. performing the procedure did tell me that I could have this irritable bowel syndrome. I think it's one of those catch-all "diseases" they tell patiences they have when they can't come up with an answer, honestly. My bowels are fine. Every once in a great while I may have a bowel situation but considering the pain meds I take I'm not surprised it's not more often. I can't imagine that they can tell if someone has adhesions through a colonscopy procedure. A colonscopy I believe just looks at the inside of your colon. If you're having the same pain as I am I would say you need to also see a Urologist just to rule out anything going on in that department. Kidney stones have become more common among women over the last fifteen years. Have you had a laproscope to determine whether or not you have adhesions? Hope you get some answers soon. I know it's no fun being in this kind of pain. My heart goes out to you.

  #9  
Unread 05-17-2005, 05:36 AM
Pain is Unbearable - Please Help

hi,
i can realate i too have endo,had a LAVH in2003 kept one ovary and the pain was horriable!!! still have alot of pain on the right side... i have a cyctocele and rectocele that i'm having looked at today and i'm going to set something up to fix it,, but i know all to well the feeling of endo! i have been dealing with it for almost 9 years.. hang in there i'm sure it's going to get better
  #10  
Unread 05-17-2005, 08:10 AM
Pain is Unbearable - Please Help

Carolyn:

Wow, I am bit concerned by your gyn's comment that if the Lupron did not work in 6 weeks, your problem is not gyn related. Lupron does not work for everyone, even for women it has worked for in the past.

That doesn't mean its not endo related. Endo is an EXTREMELY complicated disease to treat.

If it were me, I'd go for another endo specialist opinion. If your BMs are normal and you know what a kidney stone feels like (and this is not it), IMHO you need another medical opinion.

Best wishes on a speedy diagnosis and a permanent fix!!!!!

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