Hi all, I had surgery with Dr. Castellanos, of St. Joe's of Phoenix to decompress an entrapped hypogastric nerve that had become entrapped during a hysterectomy the year before. ( a very LONG and terrible story)
I've read other's stories about long recoveries, the need to be patient and hopeful, but my question has specifically has to do with pain management. In this scary world of the "Opiod Epidemic" every pain management provider I've seen on my journey had the personality of well, a commander for the Gestapo. St. Joe's warned me they can only RX me for 2 weeks post-op, and so at this point I'm trying to wean even though I'm still in considerable pain. I have an appt. With a new pm provider in the works but truthfully, I'm not too hopefull, I've had too many of them make me cry.
Any advice, recommendations even for those in AZ are- heck- I'll take a good joke at this point!
Thanks!
Surgery on 6/7/2018
Re: Surgery on 6/7/2018
Hi Chocolatemom,
I don't really have much advice---just a couple of thoughts. I have been spared this problem with my pm doctor, perhaps because the opioids I've been on are not strong. But I have also always taken less than my prescription allowed (my opioid prescriptions are for one pill every 8 hours, and with just a few exceptions, I take only one pill every 24 hours), so perhaps that pattern has made my pm doctor willing to always increase the strength or type of med the few times I requested it. I'm sure I could not do that, though, if I were recovering from surgery. Did you have a pm doctor prior to the surgery (who would know you and your history)? If so, I would go back to that doctor if possible.
April
I don't really have much advice---just a couple of thoughts. I have been spared this problem with my pm doctor, perhaps because the opioids I've been on are not strong. But I have also always taken less than my prescription allowed (my opioid prescriptions are for one pill every 8 hours, and with just a few exceptions, I take only one pill every 24 hours), so perhaps that pattern has made my pm doctor willing to always increase the strength or type of med the few times I requested it. I'm sure I could not do that, though, if I were recovering from surgery. Did you have a pm doctor prior to the surgery (who would know you and your history)? If so, I would go back to that doctor if possible.
April
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Chocolatemom
- Posts: 14
- Joined: Sun Jun 17, 2018 8:50 pm
Re: Surgery on 6/7/2018
Thanks for your reply April. The problem is I live on a small town and the pain clinic here told me they do not "do Pelvic Pain. (??) So I have been reduced to "guessing" at different providers literally by their reviews on Google searches. The last one I tried and saw right before surgery told me, "Well, just because Dr. Castellanos says he has you'll have an 80% success rate with your surgery doesn't mean you'll get 80% pain reduction. As a matter of fact you might as well get used to the fact you're going to be in significant pain for the rest of your life. And don't think you're going to be getting any pills out of me for any of this..." After that she finished up telling me I had to get rid of my heating pad I was using to manage my pain because I was "burning my skin".
And THAT was the provider who got FIVE stars.
So I'm a little lost you see...
And THAT was the provider who got FIVE stars.
So I'm a little lost you see...
Re: Surgery on 6/7/2018
Wow, that is really sad. I'm sorry you are having such a rough time getting meds. It seems like we have lost common sense in this country.
It sounds like you live in AZ, right? Can Dr. Castellano recommend anyone to you who will prescribe your meds? It seems like he would see this problem with patients all the time. If you can find a clinic that prescribes suboxone they might also prescribe subutex for pain management. It is a partial agonist any may be less likely to cause a drug tolerance. Otherwise, you might need to experiment with different combinations of non-opioid meds to reduce your symptoms -- such as topical lidocaine, ketamine, gabapentin, and baclofen or valium that can be inserted vaginally. Also antidepressant drugs such as tricyclics or lyrica can help reduce some of the symptoms.
Violet
It sounds like you live in AZ, right? Can Dr. Castellano recommend anyone to you who will prescribe your meds? It seems like he would see this problem with patients all the time. If you can find a clinic that prescribes suboxone they might also prescribe subutex for pain management. It is a partial agonist any may be less likely to cause a drug tolerance. Otherwise, you might need to experiment with different combinations of non-opioid meds to reduce your symptoms -- such as topical lidocaine, ketamine, gabapentin, and baclofen or valium that can be inserted vaginally. Also antidepressant drugs such as tricyclics or lyrica can help reduce some of the symptoms.
Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
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Chocolatemom
- Posts: 14
- Joined: Sun Jun 17, 2018 8:50 pm
Re: Surgery on 6/7/2018
Hi Violet, and any others who may to respond to me, I have not posted for a while. First I would like to state that I received a miraculous blessing- I found a new Pain management provider in the town where I live- who actually a pelvic pain patient herself! To say she 8s compassionate and understanding is an understatement!
Now as to my condition: that has been more disappointing.
I literally woke up from the surgery with the stabbing pain that I had had since the day if my hysterectomy complete gone. Dr. Castellanos said it was a combination of a nerve entrapment and layers of scar tissue he removed.
Unfortunately, about a week later I had a development of even more pain within the vagina/pudendal that was completely new! ( my old pain was more along the lower pelvis). Dr. Castellanos said it was f
Muscle spasms from my body reacting to surgery and muscle memory.
I have to say to go from excruciating pain/no pain/ then back to horrible pain in a new place is extremely disenheartening. I will start PT soon and am committed to however long it will take, but once again my quality of life sucks- I am back in bed 60- 80% of the day, on a combination of medications etc.
Another part of my journey that is hard is I have two developmentally disabled children that I desperately want to be available for. I worry that I will never be functional for them again. Please, can someone give me hope?
Now as to my condition: that has been more disappointing.
I literally woke up from the surgery with the stabbing pain that I had had since the day if my hysterectomy complete gone. Dr. Castellanos said it was a combination of a nerve entrapment and layers of scar tissue he removed.
Unfortunately, about a week later I had a development of even more pain within the vagina/pudendal that was completely new! ( my old pain was more along the lower pelvis). Dr. Castellanos said it was f
Muscle spasms from my body reacting to surgery and muscle memory.
I have to say to go from excruciating pain/no pain/ then back to horrible pain in a new place is extremely disenheartening. I will start PT soon and am committed to however long it will take, but once again my quality of life sucks- I am back in bed 60- 80% of the day, on a combination of medications etc.
Another part of my journey that is hard is I have two developmentally disabled children that I desperately want to be available for. I worry that I will never be functional for them again. Please, can someone give me hope?
Re: Surgery on 6/7/2018
That is one of the many risks with this surgery. You will likely have new additional pain with your Norma pain. I never got any relief from the original decompression surgery which only resulted in me getting re entrapped with scar tissue. And no relief with the redo decompression. Very upsetting to say the least. And I live in a state where pain clinics are being shut down due to the opioid crisis.
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Chocolatemom
- Posts: 14
- Joined: Sun Jun 17, 2018 8:50 pm
Re: Surgery on 6/7/2018
Wow- sorry to hear this about you Maxi. How long ago was your surgery? May I ask what state you live in (I am thinking about moving and certainly Don't want to make matters worse)
The strange thing is I can definitely tell my original damage/entrapment is gone- and the doctorvseems to think this new Pain is related to muscle spasms/ muscle memory in the pudendal. I just Don't know whether or not to believe him and if that will make a difference in terms of treatment.
Do you mind discuss ing Maxi which treatment options have worked the best for you if at all? Sorry, you sound so frustrated.
The strange thing is I can definitely tell my original damage/entrapment is gone- and the doctorvseems to think this new Pain is related to muscle spasms/ muscle memory in the pudendal. I just Don't know whether or not to believe him and if that will make a difference in terms of treatment.
Do you mind discuss ing Maxi which treatment options have worked the best for you if at all? Sorry, you sound so frustrated.
Re: Surgery
I live in Tn
Dr Ansell did my grist surgery and I got no relief and became re-entrapped with scar tissue. Dr hibner did the redo and still no relief and re-entrapped AGAIN with scar tissue! Thousands of dollars spent and no relief.
Dr Ansell did my grist surgery and I got no relief and became re-entrapped with scar tissue. Dr hibner did the redo and still no relief and re-entrapped AGAIN with scar tissue! Thousands of dollars spent and no relief.
Re: Surgery on 6/7/2018
Hi Chocolatemom,
Please don't be too disheartened yet because it takes awhile to recover from surgery and the fact that your original pain is better is a good sign. I was initially worse with some new symptoms after surgery but slowly over time they subsided and the original pain subsided too. I pray that you will continue to heal so that you will be able to take care of your children.
Violet
Please don't be too disheartened yet because it takes awhile to recover from surgery and the fact that your original pain is better is a good sign. I was initially worse with some new symptoms after surgery but slowly over time they subsided and the original pain subsided too. I pray that you will continue to heal so that you will be able to take care of your children.
Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
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Chocolatemom
- Posts: 14
- Joined: Sun Jun 17, 2018 8:50 pm
Re: Surgery on 6/7/2018
Hi all, thank you both for your kind responses. It takes me awhile to respond b/c of ups and downs with pain and responsibilities. Recently I have heard from both a massage therapist of 35 yrs (working on back) and good pelvic PT that I just started that gentle scar work with castor oil can remove years worth of tissue damage both externally and internally. Interested to hear anyone's opinion/experience with this. Hoping there is benefit to this as I for sure am going to try.
Blessings.
Blessings.