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The chronic pain nightmare The chronic pain nightmare

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  #1  
Unread 12-16-2004, 01:01 PM
The chronic pain nightmare

Well, I'm back, I haven't been here in a long time. I had my hyst in 2002, due to two years of bleeding, terrible pain, adenomyosis, endo, etc, this followed several D&C's and laps and tons of rounds of medical treatments (hormones, Lupron and other poisons). Of course, the bleeding stopped, but the pain was only beginning.

Its been a nightmare. I have one ovary left. I'm only 28 years old. I have chronic pain so bad that I am now treated with narcotic pain medications by an anesthesia pain specialist (and believe me, it wasn't an easy road to get here--it took being ridiculed, not believed, called a "drug seeker", a "liar", a "hysterical woman", and it took years of trying every other medication known to man to get to where I am now). My GYN is a very respected specialist in chronic pelvic pain, and he disagrees on my being on the meds that I am on, but a person can only suffer so long, you know? I have lost so much...I suffer from depression, I have attempted suicide three times in the last three years. The pain NEVER ENDS. At times, it was so bad, I thought I was losing my mind. And at times, no one would listen to me. And at times still, I think I will always be this way, and I cannot even comprehend what that means.

The "diagnosis"? Who knows? Nerve damage, endometriosis, terrible adhesions that caused more nerve damage (I form more adhesions than the normal person, and the last time they caused some bowel and bladder damage). The "plan"? A probable nerve block, to see if it works. I take my pain meds and also topamax, which is an anticonvulsant that helps with nerve pain, which incidentally, has been AMAZINGLY helpful to me--at one point it took away about 30% of my pain. (I highly recommend it.) I see a massage therapist for abdominal massage, and do gentle yoga when I am able. But you know what? I used to RUN, I used to swim and be active, and now I am 28 years old and feel like a little old lady.

I guess I just want to know that I'm not alone, that I'm not the only one who went in and had the hyster thinking "this nightmare will finally be over" when in reality it was only beginning...anyone else who faces the shame of having half of her doctors thinking she's weak for taking pain meds that the other half of her doctors know she needs....just tell me I'm not alone.

Thanks for reading, anyway.
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  #2  
Unread 12-16-2004, 01:07 PM
The chronic pain nightmare

believe me your no alone!!! hang in there honey
  #3  
Unread 12-16-2004, 01:30 PM
The chronic pain nightmare

Dear Uterless,

I will pray for you and hope everything turns out ok. You have been through ALOT at such a young age. I wish you a wonderful ( and painless ) holiday season. A BIG HUG FROM ME TO YOU!!!
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  #4  
Unread 12-16-2004, 03:31 PM
The chronic pain nightmare

Trust me you are not alone in this. I had my TAH/RSO in Oct. 2003 for severe endo and they found adhesions caused by the endo. 3 weeks later I was in horrific pain and they opened me up again and I had dense thick adhesions everywhere and engulfing my left ovary and had everything pulling and sticking together. After that, I felt okay til Jun 2004 when the pain started to return. My GYN didn't want to believe that it was adhesions again so he sent me for every test in the book and sent me to a urologist and GI doc. The uro doc said I was okay there, the GI doc wanted to do a scope, so I agreed.
During the scope it hurt so bad, I was screaming, crying and I was now wide awake and they hadn't gotten far at all. So they called in the anesthesiologist and knocked me out. They couldn't even get the pediatric scope all the way through because adhesions were twisting my large colon resulting in narrow passages. I took this info to my GYN and he agreed to do the surgery, even though I didn't have any parts left. He opened me up again (3rd open incision in <1yr) and found extensive adhesions.
In one spot, my large colon, a loop of small bowel, bladder and vaginal cuff were stuck and pulling together. He used seprafilm this time to ward off recurrence. Felt fine except for the surgery pain, then 4 weeks later, the pain was back worse than before. I went to his office, he said there was nothing more he could do so he sent me to a GYN oncologist (cancer doc) because he deals with difficult cases. He examined me, which always makes me cry, and started me on MS Contin 30mg twice a day (extended release morphine) and percocet 7.5mg 4 times a day for breakthrough pain. I had another follow up with him and he had increased my morphine to 45mg twice a day. He said he could operate to remove the adhesions but that would only provide me with short term relief and make them c ome back worse each time as they have done already. He also said that he could remove part of the pelvic nerve, but that surgery only has a 50/50 success rate--that wasn't good enough for me. He said the only way he would operate on me again is when my bowel becomes obstructed. So now he wants me to go to a pain manag. doc for my pain meds. I hate being on these things, but with all that I am taking, it only takes the edge off. And if I do anything besides running around the house, the pain gets worse. Like going to the grocery store, I come home crying.
He said that this is truly Chronic Pelvic Pain Syndrome and that I can probably expect it to be with me forever.
I also am on antidepressants now, how can you NOT be depressed at the thought of being in pain forever?!
I am filing for disability, because I can't sit for longer than 1-2 hrs without the pain increasing and can't stand for <1 hr. Don't know of a job I can do from the bed , recliner or laying on the sofa. We are having to file for bankruptcy because of all the medical bills and with no income from me we can't pay them. Sex is painful, so I won't even tell you how long ago it was for DH and I.
So trust me, you are not alone. You will find other sisters respond to this post as well. We have got to stick together and give each other support and news if something works. Please keep in touch.
  #5  
Unread 12-16-2004, 04:29 PM
The chronic pain nightmare

You are not alone! I am five years post op and still battling pain and belly issues. I've had numerous more surgeries, injections, medications, restricted diet, and am currently doing accupuncture treatments. I do have some good days, but still have bad days also. I am also on the duragesic patch for pain and take darvocet for break thru pain.

Yes, I did think that the hyst was going to solve my pain problems. Little did I know. Sigh. However, I do not regret having the hyst, I just wish that it would've taken care of ALL of my problems.

I will continue to fight and look for answers. I refuse to give up! I do hope to one day be able to get off the medications. It probably won't be tomorrow, but I know that one day I will find some long term answers.

  #6  
Unread 12-16-2004, 04:56 PM
The chronic pain nightmare

Just another member here... "in the you are not alone" club. I had only had one surgery at your age, a laporotomy. Stage 4 endo then, stage 4 endo now! Endo is an awful beast. Have you seen an actual endo expert or specialist? I am trying to help as I am lost in pain too!
Here are a few links that might be good for you. I know they have helped me.


http://health.groups.yahoo.com/group/erc/
http://www.endocenter.org/
http://www.endometriosistreatment.org/
In the last one, the answers to common questions is great!


From a fellow endosister.
Carrie
  #7  
Unread 12-16-2004, 09:06 PM
The chronic pain nightmare

No, no, no, you have a lot of freinds here that can relate to you. My sister had 9 surgeries ending with hyster. at 28, they 3 back surgeries after that, leading her to a addicted person to pain med's. now. Now she knows that she is add. to them and so does the doc. she sees at the pain clinic. A doc. at a pain clinic, really had her on to much yrs ago, and now it takes a large amount for her. She hates taken them and would do anything to be pain free and med free. The other day I was talking to her about the adhesion problem, I am having now and told her I had to do something and we talked about yoga, we are going to look into this, and I hope it helps. I have said more then I can say in the past, that if I could take the pain from her, because I have always been the stronger one and could handle pain easier than her. Well now I have the pain but she still does too. I do not want to get on pain med's. if I can get by without. One of us addicted is enough, although I don't think I would become add. but I don't want to find out the hard way either. Since that is more the way I tend to find things out. Be careful with them too.. take care...KIM My sister is 40 now and currently trying to file for disability also, for the same not being able to be in one place for long at all.
  #8  
Unread 12-17-2004, 07:27 AM
The chronic pain nightmare

  Quote:
Originally posted by gypsysway
I do not want to get on pain med's. if I can get by without. One of us addicted is enough, although I don't think I would become add. but I don't want to find out the hard way either.
One thing you need to understand, there is a difference in being an addict or being dependent to pain meds. You are addicted to pain meds if you take them differently than prescribed to get that "high" feeling. If you are truly in pain and take them like you are supposed to, you are physically dependent on them, but you are taking them because you need them not because you want them or the effects they may have. I take a lot of pain meds, I am physically dependent on them, but I am not an addict. Being physically dependent will give me withdrawl symptoms if I stop taking them....but please don't confuse addiction with dependence...it does things to the mind and your outlook if you perceive yourself as an addict.
I pray for both you and your sister that you both find relief soon.
  #9  
Unread 12-17-2004, 08:47 AM
chronic pain

you are definetely not alone. I too battle with the chronic pain nightmare. I am praying for all of you and wish each of you a happy holiday season.
Monica
TAH/LSO 3-3-03, RSO/lysis of adhesions 7-22-03, lysis of adhesions 1-15-04 endo, adeno, fibroids, chronic pain since 10 weeks post hysterectomy
  #10  
Unread 12-17-2004, 09:23 AM
The chronic pain nightmare

Thank you for jumping on this so quickly. This is so true. I find it very sad when people, feel that because they need medication to control pain that they see it as an addiction. I too take pain meds (narcotic RX) because I am in chronic pain.
Blessings,
Carrie



  Quote:
Originally posted by marianwrn
One thing you need to understand, there is a difference in being an addict or being dependent to pain meds. You are addicted to pain meds if you take them differently than prescribed to get that "high" feeling. If you are truly in pain and take them like you are supposed to, you are physically dependent on them, but you are taking them because you need them not because you want them or the effects they may have. I take a lot of pain meds, I am physically dependent on them, but I am not an addict. Being physically dependent will give me withdrawl symptoms if I stop taking them....but please don't confuse addiction with dependence...it does things to the mind and your outlook if you perceive yourself as an addict.
I pray for both you and your sister that you both find relief soon.
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