Need help and advice please

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Re: Need help and advice please

Postby Violet M » Fri Dec 22, 2017 5:45 am

Praying for a swift and successful recovery, Okiegirl.

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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Re: Need help and advice please

Postby Okiegirl » Thu Dec 28, 2017 12:58 am

Thank you so much. My prayers are with everyone on this forum. Prior to my recent experience, I never realized what some people have to endure to find the correct diagnosis and how much suffering was involved. I have extensive experience treating patients in chronic pain and my heart always grieved for them. Now I can say I truly feel their pain and also am appalled at the way patients can be treated having now experienced it first hand. Terms like - Chronic pain syndrome are just bull! My belief from being a practitioner is there IS no such thing as chronic pelvic pain or chronic pain syndrome. That is just a garbage can kind of diagnosis that shows a lazy health care provider. The body experiences pain as a warning sign that something is terribly wrong in the body. There is always a reason for that pain and it is not “all in the head”. That type of medicine...treating patients like that is simply a disgrace and cruel. I’ve seen my own medical records and am appalled at times. I’ve just had constant pain since about June and see things on my chart implying anxiety disorder...etc.Yes, someone feels anxiety when they are in constant pain without any hope of relief. Truly, never had anxiety in my life prior to losing my ability to care for my patients, my family, my home. It angers me that the medical community is so ignorant about conditions like this and how heartbreaking people’s lives become just trying to find help and survive. Hate being treated like a “chronic pain” patient, it’s offensive and something I’m sure you all have had to endure. I pray this surgery works from the bottom of my heart. God willing, if I’m ever able to practice again I’ll fight as hard as I can to help people who are suffering. I always tried my best to provide as much comfort care as possible but now I see so many providers who have little compassion and really have no business ever touching a patient.
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Re: Need help and advice please

Postby Violet M » Fri Dec 29, 2017 5:43 pm

Hi Okiegirl,

You are so right. I was appalled when I read some of my medical records from my PNE experience too, so I can relate to what you are saying. PN can be a truly humiliating disease as well as being beyond painful. I think for someone like you who is used to being on the other side of the patient/provider relationship that it would be doubly difficult to be in the position that you are in. Just never forget that this is a medical disease and hold your head high with dignity. You will come through this as a stronger person and be in a position to help change the thinking of the medical community towards this illness. Thankfully there are physicians who do "get it" and who are very compassionate but sometimes it takes awhile to find them as you go through the PN journey. I just wish there were more of them.

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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Re: Need help and advice please

Postby Okiegirl » Wed Feb 14, 2018 12:56 am

had surgery on Jan 3rd and I’m concerned. I really think Bladder pain and frequency has gotten more severe. The deep vaginal burning has gotten better. Anyone have suprapubic pain as well? I know it’s early to be worried but still can’t sit without pain...confined to bed. Dr said I have signs of right sided damage too. Not sure if I should have had bilateral surgery as I only had left side done. Pelvic floor pain much better, bladder pressure is driving me crazy. Can’t go anywhere without feeling like I need to urinate and it’s painfully. Has anyone had this? Urogynocologist says he thinks it’s not IC. Any advice on what to do? Any help is appreciated
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Re: Need help and advice please

Postby Violet M » Wed Feb 14, 2018 6:36 am

Hi Okiegirl,

Hard to comment on the specific symptoms since I don't know what approach, etc. you had done but I can say that after my surgery I felt worse for awhile and was really scared I had made the wrong decision because I had some new symptoms. The PN was definitely irritated after going through surgery. Slowly over time as the nerve calmed down the new symptoms subsided as well as the old ones slowly fading. But it took months. Recovery from PN surgery is not something you measure in weeks. From reading the forums for many years it's pretty typical not to have significant improvements until as long as 10 months or a year after surgery. So time and patience are huge in the recovery. I used to say it was like being in a prison of pain. I was mostly in bed for months. I could not sit much until the 18 month mark. Now, 13 years later I can sit for a 12 hour car ride with only a minor flare-up. So, please don't give up hope yet. You are still very early in the recovery.

I had a lot of bladder symptoms -- including frequency, feeling like I had to go all the time, and urethral burning. I think it's because the pudendal nerve innervates the bladder sphincter. I don't remember suprapubic pain but I had clitoral symptoms which is close to suprapubic. I don't know -- mostly the whole pelvis was in a mess. There were many times I thought I would go insane. Here is a list of the things I did to survive:

Straight oxycodone for 9 months post-op (not time-released) which I took just in the evening and at night to allow me to sleep. I toughed it out in the day because I did not want to develop a tolerance to the drug.
An SSRI that helped the bladder symptoms significantly. If you can tolerate a tricyclic antidepressant that might be even better -- I couldn't tolerate the side effects. When I started to wean off the SSRI about a year after surgery I weaned off by 1/8 pill per week taking a year to go off completely. I have heard of too many horror stories of people who went off of it cold-turkey.
Clonazepam to help me sleep at night.
I did hyperbaric oxygen treatments after surgery to try to help the nerves heal. My insurance covered half of it because there are peer-reviewed articles that support it for healing nerves.
My best trick for pain relief -- at this link: viewtopic.php?f=25&t=5267
It kept me from going insane at times and I believe the alternating hot/cold hydrotherapy helped the nerves to heal.
Limited activity at first because I couldn't tolerate it although that might not have been the best strategy to prevent scar tissue. Some docs recommend gliding exercises. http://www.pudendalhope.info/node/46#GlidingExercises
At 5 months I started walking outside for 5 minutes a day and slowly increased it. I can take 16 mile mountain hikes now.
Ice -- gel ice packs for the perineum and I used the 7 inch round balloons frozen with water inside and inserted vaginally to help me get to sleep.
Don't let yourself get constipated. Miralax or mag citrate -- whatever it takes. I still have to take mag citrate tablets daily.

Hmmm...can't think of anything else right at the moment but hopefully someone else will have some other tips/tricks. It is so hard to stay positive when you are going through the worst of PNE but I think there is a good chance that you will get better since you are already seeing some improvements in certain areas. That is a very good sign.

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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Re: Need help and advice please

Postby Okiegirl » Thu Feb 15, 2018 9:29 pm

I appreciate you so much. Not sure if I should have had right sided surgery as well. I had frontal approach done. Did your urinary symptoms persist after the surgery? I too have had doubts as to if I made the right decision but was so debilitated by pain I felt I had no choice. Was there ever a time when doctors suggested IC to you as a diagnosis? I know I have had too many other symptoms that guarantee a neuropathy for IC to be only reason. Most of my doctors have ruled it out but still have feeling of needing to urinate constantly does this get better with time? . How long after surgery were you bedbound? I’m starting to lose hope. The symptoms of centralized pain has decreased...no more shaking and jerking with pain. I don’t know how you managed on oxycodone only once daily. I myself tried that at first and just could not manage. Not that the pain meds helped much. Also, may I ask about your sitting pain? Mine hurts in the vagina and bladder and I feel rectal numbness or fullness...pressure pain. Did not know if this is close to the way you felt. Any advice you could give would be appreciated. I’m so terrified I’ll have to live the rest of my life like this. It’s like a nightmare.
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Re: Need help and advice please

Postby Violet M » Fri Feb 16, 2018 6:49 am

Hi Okiegirl,

Well, like you, I would say that opioids just took the edge off a little bit so I really did not rely on them very much. Buprenorphine might be something you could consider if you haven't already. I did not have rectal numbness before surgery but I had some numbness near that area for awhile after surgery, especially with sitting. I would characterize my urinary symptoms as urethral pain, not really bladder pain, although I think it might be hard to tell the difference. I never had IC suggested as a diagnosis. Diet made absolutely no difference in my symptoms. My worst pain was vaginal, worse on one side. Sitting pain was primarily a knife-like burning pain in the right side of the vagina but sitting also caused numbness/burning in the lower sacrum/coccyx/rectal area. I wouldn't say I was jerking with pain but I did get electric shocks in the vagina that made me jump and kept me awake at night. I don't remember shaking with pain but my symptoms made me nauseated and sometimes I could hardly eat.

So, yes, the feeling of needing to urinate did get much better over time. Before surgery I was getting up 6 times a night. It's basically gone now although I have to go more often than when I was younger, especially if a I drink a lot of water.

I do understand the nightmare feeling. The only way I could get away from what I used to call the "prison of pain" was to sleep. But even getting sleep was difficult.

I was never completely bed-bound but I spent the better part of the first year post-op in bed. I was able to start walking a little bit outside at 5 months post-op. I remember feeling how wonderful everything seemed -- the world just seemed so amazing and so bright after being in bed so much. I had a lying down computer set-up which helped a lot to keep me from going crazy. I wasn't able to start any PT until about 11 months post-op. It was just too painful to even think about. Since I had ligament issues I did some prolotherapy during the second year and did some PT.

As you know we are all different and there are no guarantees for recovery but I think you still have a good chance for major improvements. Will be saying some prayers for you.

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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Re: Need help and advice please

Postby Okiegirl » Sat Feb 17, 2018 2:57 am

Violet, you have been so kind to take your time to help me. The entire process is scary. Sometimes, I look on the mirror and barely recognize myself. The pain tends to steal your identity and your entire day becomes about trying to minimize it or being afraid of it. Like you said about your walks outside, brief moments of seeing outside...any moment of something normal becomes rare and precious. I miss being a mom to my kids and a wife. I also miss my patients so much. The hardest part is. Not knowing if or when it will ever end
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Re: Need help and advice please

Postby Violet M » Sat Feb 17, 2018 6:50 am

I know.....the waiting is agony. This next year is going to be tough for you but please keep in mind that if the results from surgery aren't what you had hoped for, there are more treatments becoming available that can significantly improve your chances of having a good quality of life. Lottanerve has posted about her great results with the intrathecal pain pump and Kit has had some amazing results with DRG neurostimulation. Not perfect solutions but certainly enough to make life enjoyable again. But hopefully you start to see the pain slowly fading over the coming months.

Severe chronic pain changes your personality and can rob you of your dignity -- especially this type of pain. I am sure your personality isn't changed to the point where you aren't able to show your kids and your husband that you love them -- even if you can't physically care for all of their needs right now, you can be an emotional pillar of strength to them by demonstrating courage and the will to fight through this for their sake. And, when you do get back to your patients, you will be able to empathize with them in a way that most MD's can't. In the meantime, keeping your pain levels as low as possible is really important so I think your efforts to try to minimize the pain sounds like an excellent strategy.

Take care,

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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