Update on post amniotic shot and bladder installation.

[Debra13]

Hello fellow sufferers,

I just wanted to give you a heads up of how I’ve been feeling. The first week or two I thought I was doing a little better. Then my coccyx bone and sits bone pain returned. The doctor had put me on a antihistamine for my interstitial cystitis due to the fact that my bladder biopsy cane back showing a lot of mast cells. I was getting yeast infections from the medication and had to stop the drug. The burning in my rectum is still not as bad but the vagina burning is back to where it was. I must let you all know that I was and am under an extreme amount of stress and we all know what that does to this condition. I do believe as of yesterday I did start to feel some relief but I don’t think it’s enough at this time to confirm that this procedure worked or didn’t. I was also put on another medication for my bladder only this one is an old antacid pill. So, I still just 5 weeks and it can take up to 8 weeks. I don’t see the doctor again until September. I will tell you all this that I was told my interstitial cystitis is really bad. I’ll keep you all posted. God bless. Deb.

[mjjohnson]

Could yu tell me about the shot you got with dr jarnigan and how it helped, etc.?

[Debra13 in reply to mjjohnson]

It didn’t. Lol. That’s all I can say. It worked for about 3 months and the pain returned fully. The pain never fully went away. I was still burning throughout the entire time. I just had relief with the sits bone and coccyx bone pain. I believe that was from the botox. I do believe that’s why I needed the second shot. I’m not sure this one is working either. You can’t judge it only by my results though. What works for one doesn’t always work for another. I’ve suffered for too many years over 16 years now. It may be too late for me. Remember we are not all under the same recipe. If we were this illness would be very easy to treat and there would be a cure. Just keep that in mind. I’ll give you an example. I get a nerve block every 2 weeks just for 2 days of relief. My friend can get a nerve block and it will last 6 weeks on him. That’s what I’m saying. It only last 2 days for me and yet same condition and it last 6 weeks for him. Remember that. I tell others to judge things with there gut not just with research. If something doesn’t feel right run like hell away. If you feel comfortable with the physician and feel comfortable about the procedure after extensive research then that’s how I make my decision now. Oh and one more thing. They have to take insurance. Very important. I hope that helps. God bless you. Deb. 👍🙏👱🏻‍♀️

[charlee4 in reply to Debra13]

Why did you decide to have a second go at Dr. Jarnagan? Was it in TN? I only had the one injection along with Botox and I never got better. I decided against another one. Dr J. did not take insurance. I was reimbursed for the doctor and the surgery center, but we paid for the rest. It was paid up front by us. Yes, we all have to find the things that work for us. If it works, we are fortunate. Some of us haven't found that help yet. We just keep trying and know that one day there will be help.

[Debra13 in reply to charlee4]

And it was fully covered by my insurance. I went to an incredible doctor who is treating my interstitial cystitis in Philadelphia the shot was given as a secondary with bladder installation and biopsies. She is treating me for IC. AND it wasn’t done by Jarnagin in Tennessee. It was done by a Dr. in Philadelphia.

[Debra13 in reply to Debra13]

For your information I’ve been suffering for 17 years and been through hell and back. Just trying to put it all out there I’ve done everything but cryoablation and surgery. Thought I would tell it like it is. So yes I’m sticking with my Theory. We all don’t fall under the same cookie cutter cookbook if we did we would all be cured. Sorry. Deb God bless you and feel better lord knows I’m still fighting and will till I find something that works for me. I wasn’t reimbursed by Jarnagin either. And my insurance paid him too. Leave it there ok. I’m very angry about his office right now.

[charlee4 in reply to Debra13]

Me too. angry, enough so that I would never go back to him. Leave it at that!

[charlee4 in reply to Debra13]

Thank you. It was probably covered due to the fact there was other things going on with you that he was treating.

[Debra13 in reply to charlee4]

It wasn’t covered by him. And I didn’t go back to him. Don’t you read the post. I went to Philadelphia for my second shot and it was done at Jefferson Hospital in Philadelphia. Not Tennessee with Dr. Jarnagin. He charged me cash out of pocket when I went to him but I also found out recently he charged my insurance company so his office should be audited. I’m working on getting that done. You obviously don’t read the full post if you did you would see that I saw a woman doctor in Philadelphia who knows what the hell she is doing. And he didn’t treat me for my bladder conditions. Have a pleasant day. Don’t follow my post anymore ignorant is bliss.

[charlee4 in reply to Debra13]

Sorry I did not write correctly. I did understand you went to the doctor in Philly for further treatment. I am sorry I upset you.

[Debra13 in reply to charlee4]

You and i were supposed to talk on the phone with Anne. I would like that very much. I have heard many good things about you friend. Pain makes ppl say and do things out of character so I am sorry if I upset you in anyway at all to. Please forgive my rude behavior. I’m never like that. God bless you. Deb. 🤗

[charlee4 in reply to Debra13]

I am going for a procedure on Friday. Today I have plans as well. I would like to speak with you and Anne. I will try and recontact as soon as possible. Thank you for your reply, I don't know which Anne you refer to. Please let me know and I will read what she has written and contact her as well... when we can talk. Sorry this pain is all my waking hours and I know we are all on our last nerve!!! My memory is also effected.

[Debra13 in reply to charlee4]

Anne is from Florida. She is Anne 77 I think on here. She says you and I have so much in common. We both kinda got PN the same way. Funny I’m currently making centerpieces for my wedding. I understand that you may or you do crafts. Is this true. I do then cause it kinda helps with the pain. I put all the pain into the craft I’m making and something beautiful comes out of it. It’s kinda strange that an ugly monster can create something so beautiful. Please keep In touch. Pm me and I’ll give you my number and we can do a 3 way call with Anne. What procedure are you going for if you don’t mind me asking. God bless I’ll say a pray and Rosary for you ok. Deb. 🙏👍😂

[Debra13 in reply to charlee4]

Read statement about Anne.

[Debra13]

I didn’t have it done by Dr. Jarnagin. It was done in Philadelphia.

[Debra13 in reply to Debra13]

Apparently you are friends Anne you need to talk to her on the phone. Her and I are very good friends. Anne is going to Philadelphia to see Dr. Echols for a second shot as well. I’m sorry. Just call Anne.

[charlee4 in reply to Debra13]

Hello Debra. I do crafts, yes. I would love to see some of the things you made! I do floral design and paper crafting of homemade cards. I occasionally sell some florals, but living in the country near a small town, I have very limited opportunity to sell, but the truth be know, I don't care. I like to do them for funerals of friends and the like for my own use and a few close friends.

Yes, Anne and I are friends though I have not talked to her in a week or so, so I didn't know she had decided for sure to go to Philly for treatment. I pray this will work for her.

I will give you my cell number by private message and maybe we can talk. Mornings are best for me. I wear down fast during the day. Please send me your phone number. Sometimes I just don't want to talk about things, but it is the only way to find out how others are really feeling.

Blessings, Charlee4

[Debra13 in reply to charlee4]

See private message ok. Great. We’ll talk ok. Deb

[Black_Cat1]

Wishing you well 🙏🌹