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chronic pelvic pain chronic pelvic pain

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  #1  
Unread 11-15-2004, 11:37 AM
chronic pelvic pain

I think most of you know my history and you can see my from my sig, but let me tell you that i am seeing a gyn/oncologist because he specializes in diff cases and some pain management, but mostly for cancer patients, which I am not.
He told me on his last visit that I might be looking at chronic pelvic pain from the adhesions and that he didn;'t want to operate unless I became obstructed (which is fine with me).
However, I want to know if there are any sisters out there with this diagnosis, what their treatment is, and are you able to work, or do you claim disability. I have a desk job as a nurse case manager and can't sit for any longer than one hour without the pain getting unbearable. I can't stand for longer than 30mins and the same happens. I am constantly changing positions during the day and lay down a lot. I have not been back to work since this last surgery and missed almost 5 months of work last year with all of this and my neck problem. I am on MS Contin 30mg twice a day and Percocet 7.5mg 3-4 times a day and that only takes the edge off. If I do anything active, the pain gets bad.
I go back to him for my 2 week follow up to see how the meds are doing and I was hoping for some info before I go tomorrow afternoon.\
I am a cheerleading coach and all I can do now is sit and tell them what they are doing wrong..LOL Competitions have been rough having to sit and go up and down steps, etc. These girls are great and sent me flowers and cards in the castle each time I go in. They are ages 10-12 with my DD being one of them. I miss them.
Thanks ahead of time!
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  #2  
Unread 11-15-2004, 04:15 PM
chronic pelvic pain

Hi ((Marian)),
I am so sorry to hear of your possible dx I too was given this diagnosis about 4.5 yrs ago. I have Chronic Pelvic & abdominal pain due to severe, inoperable adhesions & nerve damage. Mine started after my Hyst which only led to further complications requiring 2 additional surgeries both due to adhesions. One was 2 total Obstructions that had come very close to being fatal. I was in the hospital for almost 2 weeks and experienced further complications as well..sigh. After that
my pain only worsened...I sought out opinions from a few Specialist all telling me that it was too risky to undergo any further surgery unless it became life-threatening. I was referred to a Pain Mgmt group to help control my pain. I went there for 4 yrs..I underwent multiple nerve blocks, injections, PT ect to try to relieve some of the pain..all to no avail:-( I do take pain meds on a daily basis as I have for the past 4.5 yrs. My PCP took over my Pain Mgmt several months ago and has kept me on the same regimen. I could not function without them....before I spent days in bed, sometimes having to crawl just to make it to the bathroom. Pain Mgmt has given me a piece of my life back. I had continued to work up until about 14 months ago...I have been on a type of leave since. About 8 months ago, I filed for Disability thru the state...I have my final review this coming Friday in which I will find out if I qualified. Luckily, I had Long-term Disability insurance thru my employer in which I receive 65% of my salary until I am no longer disabled or become of age for retirement. As thing look now, according to my Drs....I will not get better, things have worsened in some ways but have improved in others:-) I do find that taking things one day at a time helps as does being grateful for the small victories, the days without pain!!

For me, admitting I could no longer work was a major emotional hurdle. I battled that for a long time...thinking I was weak or a quitter if I did, like I was giving up. I felt the same way when I was first referred to Pain Mgmt..I wanted answers, a cure not my symptoms masked. I have found though that for some of us there are no answers no cure but why should we have to suffer when there is some relief available why we continue to seek out those answers....
Another thing that I hold onto is hope!! I have hope that somehow, someday...someone will find those answers to my own and my many other Dear ((Sisters)) who are suffering chronic pain or other issues. Many of us have lost a lot, forced to give up our careers, social lives and soo much more to our pain..the one thing that no one can take away is our hope...I will hold onto that forever

My heart goes out to you ((Marian))...I as many others here as well, understand what your going through..the pain, the frustrations, the never-ending quest for answers...
Having that understanding & support from those here has enabled me to keep up the fight, to do things I never thought were possible..I hope that you find that here too

Only you know what you can handle physically...the disability process has become much faster & holds less paperwork and such than it did before..you can even file online! Its something you need to discuss with your Dr tho as you will need him to state you are unable to work should you decide to take this path. Here is the link to the site, it contains Q & A's to many of the questions I'm sure you have concerning the process:

www.ssa.com

Endometriosis, Adhesions and Chronic Pelvic Pain are just a few of the now recognized disabilities thru them, we've come a long way!!

I found printing off info concerning my conditions, chronic pain ect to take with me to my Drs really helped them understand more of what I was experiencing but sometimes was unable to express to them the extent of it.
Here are some links with info on Chronic Pelvic Pain you may find helpful:

This site has tons of info! It has some great info on disability along with resources & tips on going thru the process.

Adhesion-related disorders: information and support from the International Adhesions:
https://www.hystersisters.com/vb2/lin...n=jump&lid=216

Road Less Traveled: Adhesions Resources:
https://www.hystersisters.com/vb2/lin...n=browse&cid=5

Chronic pelvic pain: Puzzling, frustrating condition:
https://www.hystersisters.com/vb2/lin...=jump&lid=1290

Discovery Health :: Women and Pain:
https://www.hystersisters.com/vb2/lin...n=jump&lid=349

You can also you the following link to our search page to locate info & experiences posted by others concerning similar issues:

https://www.hystersisters.com/vb2/search.php

Keywords such as: Adhesions, Chronic Pelvic Pain, disability, Pain Mgmt and more will turn up many, many threads here from others...

I'm sure others will come along and share also...
Good Luck (((Marian)))! I hope all goes well with your upcoming appt! Please keep us posted on your progress and continue to ask questions and seek out that info! Some other helpful things I have learned through out all of this is that I know my body best, I know when something isn't right, that I am my own best Heath Advocate; for only we have to live with the consequences be they good or bad of any treatment, procedure ect that we undergo. Knowledge really is power exp. when we are dealing with our health!

Hang in there Please know you have many ((sisters)) that are here for you....((((hugs)))))
  #3  
Unread 11-16-2004, 08:46 AM
chronic pelvic pain

Wow (((Sheri)))! What an informational and inspirational post! You are such a strong sister!

I, too, am dealing with pain that I don't have answers for. Even though I would like answers and have everything "fixed", I don't know when/if that day will come. In the meantime, I am (almost) 36 years YOUNG and want some sort of a normal life. I want to be able to function and do things with DBF and my kids! I hate the thought of being on narcotics daily and am afraid how people with interpret that. HOWEVER, I have to resign myself to the fact that this may be the only way to have those "small victories" to be grateful for.

My thoughts and are with you (((Marian))), (((Sheri))) and all the other sisters dealing with this.
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  #4  
Unread 11-16-2004, 09:30 AM
chronic pelvic pain

Thank you (((Sherri))) for all of that information, I had been on the adhesion web site before. I got all the information I need on disability, but i didn't see CPP or adhesion pain on the "list" like you said, was I looking in the wrong place? What meds are you on?


(((Billssweetie))))

You are always there when I need ya. I know you too understand exactly where I am coming from and what I am dealing with. I am hoping that my doc at the appt this afternoon will increase my breakthrough percs because sometimes 3-4 a day is not enough, and there isn't a way of knowing or a trigger of when it gets worse. I am 38 yrs old, not much older than you and I certainly didn't picture my life like this.
What kind of meds are you on?


Thanks for everything !!!! I will let you all know what the doc said. Having mom take me this time, she remembers things better than poor DH..lol Plus, I am still her baby girl and she will make sure he does right..LOL
  #5  
Unread 11-16-2004, 10:13 AM
chronic pelvic pain

Thank you ((Billsweetie))...I know you have battled some of the same problems over the years
Keep up the hope girl

(((Marian))) ,
The list available on their site doesnt outline those conditions...I'm not even sure if its available to us..sigh. But if you will go back thru the archives of the IAS website you will find where the bills were passed into law as these conditions becoming a qualified disability. You will also see there are thousands of others out there who recieve disability on these basis. The SSA looks more at symptoms, the pain it causes on an individual basis. The conditions there are the ones that are severe enough that there is no middle ground such as the ones we are talking of. Some sufferers of Endo, CPP or Adhesions dont experience the severe levels of pain or some have few symptoms at all...I think thats the reason why those lists arent available to us and things are based more on each individual situation...

I am on OxyContin with OxyIR for breakthru...I have been on those for almost 3 yrs. Before that I used a Duragesic Patch. I am also on some other meds as I have a few other conditions, one being Fibromyalgia. There are many ((sisters)) here in Pain Mgmt for Adhesion pain, Nerve Damage or other pelvic pain...

  #6  
Unread 11-16-2004, 10:22 AM
chronic pelvic pain

Sheri,

Thanks again. Have you found over the past 3 years that you have had to increase your meds because of tolerance?. I am on my way now to docs, mom is here to pick me up. I will post the appt here and let you know what he said about increasing my breakthrough med.

Thanks again, so much!
Do you think printing out some of that info on IAS on disability would do good to take to the "meeting" you have to have or send it along iwth my other papers?

Thanks!
  #7  
Unread 11-16-2004, 10:51 AM
chronic pelvic pain

Good Luck today ((Marian)) ,
Yes I have had to increase a few times...I think thats normal for us to build tolerance though...

I think printing that info off will help alot, it always has me...

I'll be watching for your update..hope all goes well..((hugs))
  #8  
Unread 11-16-2004, 12:41 PM
chronic pelvic pain

(((Marian))) Please let us know how your doctors appointment went! I will be waiting for your post and keeping my fingers crossed for you. As far as my meds go, I take Lodine 400mg 2x a day, Soma 3x a day and (right now) Lortab 5mg 4x a day. I try not to take the Lortab all the time, but find the pain sometimes gets uncontrollable if I don't. I was on Darvocet before my surgery on the 21st and was having ALOT of breakthrough pain even taking it on schedule. I'm that she doesn't try and switch me back to it on Monday! (That is one of my biggest concerns.) I've noticed the return of a pinching pain from near my left hip bone on out to the side when I sit for long. Unfortunately, I know that is adhesion pain. I'm wondering what trigger point injections would do for adhesion pain, if anything???
  #9  
Unread 11-16-2004, 01:15 PM
chronic pelvic pain

Okay, I am back. Well pretty much uneventful. He increased my MS Contin to 45mg twice a day and cont the percs although he said when he sees me in a month, he would like for me to tryand ween off of them...yeah right, unless this increased morphine is a freakin miracle, I can't see it happening. he said that he hopes to ween me off the morphine too, I asked him when, and he said he has no idea and he didn't want to speculate. So....I go back in a month at that time, i am going to ask some more questions about my prognosis, will the pain stop? What else can we do? He hurt me like a big dog during exam so I planned it out right that I could take a perc when I got home, thank goodness..lol I get the feeling from him (and so did my mom) that he expects this pain to just go away. Hmmmmm, never heard of that, but maybe I will be the first..LOL

You know Billsweetie, one of the pains that bothers me the most is on the left side in the crease of stomach and leg when I sit. That adhesion before was almost at rectum,vaginal cuff, bladder and a loop of small bowel. Hey maybe we twins..LOL
Gotta laugh, otherwise I would scream. I wish I could take Lodine, but I can't take any NSAIDS because of horrible swelling from it 2 years ago and I had an ulcer at one time. Otherwise, I would be popping those suckers like candy. They work so good!! I did ask him :"If I want to have sex, can I?" He just looked at my mom..LOL...I told him it was okay, she knows her 38 yr old married daughter with children has sex...LOL
He said if I want to, it might hurt. I was only asking IF...LOL
I really don't want to cause I know it will hurt. oh well, hubby will have to deal a little bit longer..LOL...who knows, maybe I will throw him a bone if he is nice.
Thanks again ladies for everything! I will post on the increased morphine results tomorrow night.
  #10  
Unread 11-16-2004, 03:20 PM
chronic pelvic pain

Hmmm! I'm confused as to why he would wean you off the morphine if nothing else is done to get rid of the pain???? Will adhesion pain simply "go away" at some point? I don't see how it could if the adhesions are still there. That has been my problem with several past docs (GPs)...they would be controlling my pain and then wham! they just stopped RX them. Of course, nothing had changed so the pain would come right back. I just don't understand this thinking.

Maybe we are twins...LOL! I know that my sigmoid colon was adhered to my vaginal cuff and I had several other very thick adhesions in my LLQ. I understand the pinching thing in my hip/side now....just don't like it any better. Ha! Ha!

Do let us know how the increase in the morphine works for you. Still keeping my fingers crossed!
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