Hoping for more botox but seeking help with alignment issues first.

[Shanellope93]

So, now the botox has completely warn off and I'm back to the full range of pain and complex issues. My doctor has encouraged me to see a physical therapist/sports injury specialist to work on alignment issues, assuming there are some that prevent the botox from lasting. It makes sense, if your hips, legs, back, etc are out of alignment that there will be a continuous pull on the pelvic floor not allowing it to relax and heal. So I'm seeking help from two different specialists in orthopedic and soft tissue manipulation to look for a fix there first. Nothing is quick. The hardest part of this complex condition is dealing with the inability to get relief NOW. 26 years of fighting....surgeries, head scratching doctors...the exhaustion that comes with that. My family (4 kids+ husband) are now seeking counseling for having lived with me all these years. That's hard to swallow. The effect on them has been so much greater than I'd even realized. They suffer, seeing me suffer. Having me miss out on aspects of their lives in these teen years, has impacted them. The emotional pain that that adds, is too much to bear. Next step according to my husband is psychiatric counseling for me as well.

I appreciated the video shared about pudendal neuralgia and pelvic pain.

[Icybonz12]

I am so sorry for all you are going through, the physical pain as well as the emotional turmoil affecting your family. You are a strong woman. I hope this new avenue you are taking will provide answers and relief.

[Hidden]

It's hard when family are involved. The only way is acceptance by everyone. Acceptance that something happened to cause your pain, acceptance that this is you now. They also have to mourn the loss of their wife or mother as they knew her. It will sort its self out if all family members go into it with an open mind.

[Hidden]

I worked through a chiro, craniotherapist, bowen before finding a sports physio. Having similar problems to yourself, I wish I had gone there first.

[RLH356]

I'm so sorry for the grief you all are experiencing. It definitely is part of the process and it sounds like you are staying hopeful and working through it. I would definitely encourage you to see a good PT. There are a lot of other alignment issues that coexist with PN. I have SI joint dysfunction with my PN and when it is out of alignment the PN pain is worse. I wish you and your family the very best. Keep us posted when you can.

[Shanellope93]

Thank you all for the encouragement.

[Hidden]

I am so sorry about your chronic pain and feeling bad about the effects on your family. I had something sort of similar and my son basically flipped out and hates me now and refuses to have anything to do with me. This has been very painful.

I wanted to ask you, if you don't mind, why you had the botox treatment and how it helped. I have chronic bladder pain but at one point I looked into it and decided it was not for me, but I would really appreciate reading about your experience and what you had the treatment for.

I hope things improve with your family; they do love you or else they would not be affected by what you are going through. Remember that they love you. Take care and best wishes...

[Shanellope93 in reply to Hidden]

Thank you for your words. The reason I tried the botox, in simplest words is that I've known that my pelvic floor had been in spasm for years. Diagnosed through biofeedback and urinary retention. It's a long complicated history through many years, surgeries and treatment. Botox made sense because it relaxed hyper tense muscles and I knew I needed that. Also, it was basically the only thing I hadn't tried.

I'm sorry to hear about your pain. And the hardship it had caused with your son. My daughter had also had that sort of reaction, manifesting in very ugly ways that include OCD. It's very painful. I hope I answered. My best to you.

[Hidden in reply to Shanellope93]

Thank you... yes, it is horrible when a child, in my case an adult child, reacts with anger about your illnesses. This has been the most awful thing I have endured. The one thing I wanted to add, since I was suggesting tricyclic antidepressants for chronic pain, is that I had urinary retention for the first time in my life. I think it basically CAUSED the interstitial cystitis that I have. I didn't mention it because so many people are helped by this type of medication. So if you have that... then tricyclics are probably NOT for you. I am going to look into Botox again. My muscles are very tense when the PT measures it with her electric thing; I am over three times more tense than you are supposed to be. I don't feel muscle tension, but I have awful problems with my bladder. I have been getting PT for quite a few months and there has been no relief. I don't know what to do. Anyway I just wanted to tell you that the tricyclics do cause urinary retention, so I guess I take back my suggestion.... I wish you the best in curing the problems with your family. I wish I had one... good luck and hang in there.