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Pain - Your Informed Opinions Needed Pain - Your Informed Opinions Needed

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  #1  
Unread 01-14-2004, 07:23 AM
Pain - Your Informed Opinions Needed

Hi, everyone. I have been in almost constant pelvic pain since I had my uterus removed in September 2001. (Had abdominal incision, because didn't want cervix to be taken. Still have ovaries.)

The pain that I have worsens with any activity - sitting at computer, having sex (with or without intercourse - if I orgasm, pelvic muscles are used and I have unbearable pain for days afterwards - doesn't hurt to have sex, though), walking, standing, etc. If I lie down for days in a row, I feel almost human.

I am wondering if this is possibly adhesions as a result of my surgery. Guess it could also be nerve damage or entrapment. Going to a new pelvic pain specialist GYN in Baltimore tomorrow, and am praying that he can figure this out and help me. Before the surgery, when I wasn't having unbearable menstrual cramps, I was an extremely active, vibrant mom, wife and small law firm manager. Played sports with my daughter, played tennis, etc. Can't do any of that now - in fact, sometimes I'm in so much pain that I can't even attend my daughter's basketball, soccer or baseball games.

No history of sexual abuse, etc. - in other words, not psychological. Used to be very optimistic, "up" person. Still am, when not in pain, but that isn't very often. Everything I do is a chore. Submitting a disability claim now, and even that has taken me two months to complete, because of my situation.

Thanks for any insight you can give me!

Judy
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  #2  
Unread 01-14-2004, 07:31 AM
Pain - Your Informed Opinions Needed

Dear judy,
I would definately ask him about the muscle aspect of it... like pelvic floor spasms.

Of course, the muscle problem could be a result of a nerve problem or just a result of referred pain. I have alot of myofscial trigger points in the muscles all around my pelvis and was told it is a result of the years of internal pain... something to do with the pain signals overflowing in the spine into nearby nerve paths and then the brain perceiving that area to have pain also and sending back the pain response to that area... which, if it is muscle, means it tightens up.

I have a similiar thing with my bladder apparently. When my pelvic pain is bad my bladder starts to act up and I think I have to go all the time. Fortunately it only took a low dose of Elavil to settle that down.

THe only thing I found that relieved all my muscle problems was when I had a pain mapping done internally and they found the primary cause of much of my pain and removed it.... then it took several months for all the muscle stuff to finally settle down and it eventually did. Of course, it is back in full force now and it seems I have something else going on internally.

(I haven't had any abuse or anything either...)

Let us know what the doctor says. Keep that good attitude... it can help you immeasurably to deal with the problem.



Sarah
  #3  
Unread 01-14-2004, 07:40 AM
Pain - Your Informed Opinions Needed

Thanks so much for that info. I'm going to print your post out and take it to the GYN.

Judy
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  #4  
Unread 01-14-2004, 08:05 AM
Pain - Your Informed Opinions Needed

Judy,

Have you seen a physical therapist? I had a vag hyst with A&P repairs Nov '02. I was in pain almost all the time in the pelvic area. I also couldn't move my bowels. I went to a PT and she measured my vaginal muscle tone. It was extremely high, too high. She said that many women that have had pelvic surgery increase their muscle tone as a protective measure--sort of their bodies natural response to trauma. Even this doesn't tone down by itself you can end up with lack of blood flow to tissues and pain. I have had 8 therapy sessions since Dec 1st and I am thrilled with the results. My pain has lessened remarkably and I am able to move my bowels.

good luck to you
Denise
  #5  
Unread 01-14-2004, 08:16 AM
Pain - Your Informed Opinions Needed

I haven't yet seen a physical therapist, because I am scared to death of it causing even more pain, and I have no meds right now and haven't for a couple of weeks. Going to find new pain management docs, partially because of location and partially because I felt a bit like an assembly line thing going on - go in once a month to get prescriptions and talk to the doc for a few minutes. Was made to feel that if I said meds I was on weren't adequate, she would put me in a substance abuse program (and she was only prescribing enough painkillers to take half of the time to reduce risk of addiction - but nowhere near adequate pain control, even if I lie down most of the time).

I am praying that this new doc will be sympathetic and compassionate and prescribe painkillers for me, so that I CAN go to physical therapy knowing that if the pain worsens afterwards, I will have medicine to make it go away. (And that he can recommend a PT who participates in our insurance, because we have no money for extras, since I'm not working much at all.) Or, if he won't prescribe meds, hopefully I can find a new pain management doc, who is informed about pain medicine and quality of life issues, etc.

Thanks for your reply. This board is very helpful, though sitting here so much for the last few days has taken its toll on my bod.

Judy
  #6  
Unread 01-14-2004, 08:24 AM
Pain - Your Informed Opinions Needed

Dear Judy,
I will be very interested to hear what your appointment reveals. I have very similar pain. It has gotten to the point that the nerve endings are reacting up into my spine. I know it sounds weird but sometimes it feels like my eyeballs even itch with it. I am in constant discomfort with nerve ending pain and constant pain in my left groin and pelvis. I am now seeing a neurologist and a massage therapist who deals in pain management with electrical acupuncture. So far I have had no relief. My massage therapist started a new protocol on Monday for different energy pathways. I see him again this afternoon. He told me that if this didn't work it is probably nerve entrapment. He said that since the left leg muscle is drawing up that maybe the neurologist could do an injection of botox into the muscle. He said it was not an easy procedure and it requires going into the back with a long needle. Ouwee! But I am ready for any relief at this point. I am taking Neurontin but I don't think it is helping alot. I am also taking a low dose of Xanax which relaxes the muscle and seems to give me the best relief so far. Good luck at your appointment and please let us know what happens. We depend on each other for clues and possible answers.
  #7  
Unread 01-14-2004, 08:28 AM
Pain - Your Informed Opinions Needed

Judy,
I forgot to say that the only time I have relief is when I wake in the morning. It has to be because of the inactivity during the night. I am taking Mirapex for Restless Leg Syndrome at night. I hate getting up in the morning because it feels so good to be without the pain.
  #8  
Unread 01-14-2004, 08:42 AM
Pain - Your Informed Opinions Needed

The Neurontin doesn't do much for me either, except that if I do too much (activity-wise), the REALLY bad pain goes away more quickly (in two or three days of doing nothing) than it used to before I started the Neurontin (a week or longer of lying down).

I have the same thing happen to me sometimes. Some days, when I wake up and am still in bed, I think I'm feeling okay. Then as soon as I get up and have a bowel movement and get my girls off to school, I'm in pain again.

I'll let you all know what happens at the doc's tomorrow. Please keep posting, other sisters, if you have any thoughts on this.

Thanks!

Judy
  #9  
Unread 01-14-2004, 09:43 AM
Pain - Your Informed Opinions Needed

Hey Judy:

Always sad to see yet another one of us experiencing pelvic pain.

My symptoms are different than yours and not disabling very often. However, I am going for an exploratory laparoscopy on Monday (19th) so that my doc can look for and fix whatever is causing my pain.

We figure in my case it is adhesions or endo implants causing my pain - given my history. I did really well (actually I felt better than I had since I was 13) for several months after the hyst and then the cyclical pain came back.

Has anyone suggested having a "look" at your pelvis via a laparoscope? They usually can fix adhesions while they are in there having a look around. In my case, I have signed the paperwork to authorize a laparotomy (go back in through TAH incision) to do any tough cleanup, if needed.

I hope you discover the source of your pain soon so that you can begin treatment.

In the meantime ..........
  #10  
Unread 01-14-2004, 09:49 AM
Pain - Your Informed Opinions Needed

Thanks, Michelle. After my last surgery, I'm scared to death of the thought of having any other surgery. I didn't have any problems after the laparascopy in 2000, though. Healed just fine, and I had no endometriosis or anything in there. The hysterectomy surgery (which obviously is a much bigger deal) is what resulted in this pain.

If I have to go under any knife again, I'll do it, though, because I have to have answers! Thanks again, to all of you.

Judy
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