Hello fellow sufferers. Update on amniotic shot.

[Debra13]

So, here it is guys. I hate to be the bearer of bad news but my shot seems to have lasted only 3 months. My pain is back. I did go for another nerve block on the 28th without steroids just anesthetic which I get every 2 weeks because I just got married on Saturday and was hoping the block would at least get me though the wedding. It did. I find now that my medication isn’t taking the pain away like it was doing with the shot and I was able to decrease the amount of pain medication I was taking. I can’t say that now. My rectal burning has returned and it was gone. I spoke to Dt. Echols In Philadelphia and we are planning to set up another injection soon as long as it is covered by insurance. I’m so sorry everyone I was really hoping to share great news with you all. 😔😩😭 if any of you hand any questions. Please feel free to PM me. Still hopeful Deb. God bless us.

[Lexi1221]

Hi there.

Question to you. Do you just have rectal pain, which I know is terrible?I have rectal and vaginal. Unfortunately for me when I move at all my pain gets worse. If you get shots which help, wouldn’t it be worth it going every three months? I would love just having one day of pain where I can get out of bed. My pain gets worse as the day goes on.

[Debra13 in reply to Lexi1221]

Yes I’m going for my 3td injections in December. I already set this up. Been suffering for 17 years with rectal and vagina pain. Horrific pain. Been definitely diagnosed with Pudendal neuralgia and interstitial cystitis. It’s a world of hell which we all know. But since the shots seem to help I will be doing them every 6 months because of insurance in between I will continue to get nerve blocks every 2 weeks with just the anesthetic no steroids. If you are suffering like that you may want to consider the shots. Hope that helps. Deb. Remember this what works for one with this condition doesn’t always work for another. You have to find the best treatment for you. I also recommend this. Try to live as impossible as that seems but I do things in moderation. If something increases my pain I don’t do it. But I’m no longer laying in bed 24 hours a day 7 days a week. Private message me ok. Hope that helps. Deb.

[Lexi1221 in reply to Debra13]

Not good with all this how do you private message? I’ve been dealing with this for 14 years. 2 months ago I had vaginal trigger point injections that went bad. He must have hit nerves not muscle. I’ve been in bed ever since. I’ve had trigger point injections before and this never happened. I’ve been diagnosed all these years with Pelvic Pain. How did they confirm Prudendal Neuralgia?

[Debra13 in reply to Lexi1221]

I had an mrn and diagnostic Pudendal nerve block.

[Debra13 in reply to Debra13]

Thank you for the wishes.

[Lexi1221]

Congratulations by the way😊

[Pommo4]

Soooo sorry. Shot for Pudendal Neuopathy? Through ishial area or alcock’s canal???? Had one two months ago, eith steroids. Still helping I think. I think 3 months is hreat thst it lasted that long. Having another asap would be my suggestion. Please ritebac!!! Pam

[Debra13 in reply to Pommo4]

I believe it’s the ischial tub area. I would love to have another amniotic shot right now but it’s very expensive procedure. And insurance won’t cover it right now. I’m December they probably will. Thank you. Deb

[Hidden]

Hi Deb,Having not heard from you in a while,I thought he ho,it's worked .

I'm so sorry it never,I know you've been to hell and back.

Congratulations on getting married. Hope your both very happy together.

[Debra13 in reply to Hidden]

Thank you. Yes. Kinda sucks that it came back the night of the wedding. But I’m still gonna fight this. Deb.

[Luckee]

Hi, I’m Joan and new to this site. I’m the Writer of the “medical mystery” comment. I have just been introduced to a therapists office called “pelvic sanity”. They are physical therapists who specialize in therapy for pelvic pain, which I have had for almost a year now but just recently got worse. I’ve spent 3 months going to specialists and having every test imaginable done with no diagnosis. However, I’ve now had 2 appointments with my therapist and oh my gosh! What a difference! It’s crazy! I actually almost feel human again! She said very few people know this treatment exists and I never got referred by my doctor, I found it doing research online. Most of her clients have been suffering for years with no diagnosis and no relief. It may be worth a shot for you to try it! Please let me know if you want any info or their contact number if you are in SoCal. Good luck and congrats on your marriage!

Joan

[Debra13 in reply to Luckee]

What’s the treatment Joan. I wouldn’t be surprised if I’ve tried it already. Deb

[Harrell in reply to Luckee]

Joan, please tell me what kind of treatment you received. I’m sure a lot of other ladies would appreciate the info. I have been going through Levator ani Syndrome for over three years. I am so sad and depressed. I feel like my life has stopped.

Judy

[kalecolbe12 in reply to Luckee]

I was wondering if you're still on this site what kind of work does your pelvic physical therapist do on you ?does she do internal because I couldn't tolerate the internal ...mine is rectal...but just wondering if she does mobilization or pudendal nerve glides?

[Luckee]

Two things: the pain across my pelvis, which went all the way across from left hipbone to right, my therapist believes is caused by fascia being twisted. I had a c-section 30 years ago and often complained about potential scar tissue being a potential reason for my pain but no doctor listened to me. She said most doctors dismiss it but fascia is life a tissue that runs throughout your body. She likens it to the filmy skin that covers a raw chicken breast. Over time, it gets twisted in with other tissue and grows over it and organs, causing pain. In therapy, she literally grabs the “roll” I have above my pubic bone and pulls it like it’s taffy. Hurts like hell! She goes all the way across and also does my bladder, which is underneath where your pubic hair grows, and pulls the skin there. She is stretching the fascia out. I have had two treatments a week apart and I wish I could go everyday! It hurts when she’s doing it but I can tell a difference already. She also does therapy inside my vagina into my cervix, which also hurts like hell but she can tell and won’t do it too bad😜 it has helped tremendously. She wears a glove and presses inside farther than any obgyn ever ventured, and pushes on specific nerves. It’s amazing to feel the connection when she pushes on one nerve and I can feel it on the opposite hip! My back pain is diminishing, my bladder pain is gone and if I felt this good to begin with I wouldn’t have gone to 5 doctors and had multiple tests the last 3 months! I still have a couple of months of therapy and am going to a urogyne tomorrow that I already had set up, but I’m telling you, this is legit. My friend went there for therapy because she would leak when she exercised and in 5 weekly sessions they did pelvic therapy on her pelvic nerves and she doesn’t leak anymore. My therapist could even tell where I had my episiotomy 40 yrs ago! Bonus: she did a stint in the lymphadenopathy area at a hospital and knew how to do lymph node drainage therapy on my swollen inguinal nodes that were causing so much pain I couldn’t walk, and I have no more pain! I’m not stupid, I know I need to keep going and also make sure there are no other issues,but I’ve already had every test n own to man and nothing has helped until this. Thanking God and praying it lasts!!!

[SuzyQ in reply to Luckee]

Oh my; this sounds like an amazing treatment Luckee. Thank you for explaining it so thoroughly. I don’t think there are any Pelvic Physiotherapists in the UK who do internal trigger points (or maybe I just haven’t found them yet)!

I will continue my search...

All best wishes, Suzy xx

[Luckee in reply to SuzyQ]

I am seeing my therapist tomorrow and will ask how to find one for you if you like. I also saw the urogyne yesterday, my final doctor, and she also suggested going to a pelvic therapist (aka physiotherapist in the UK). She pressed on the same nerves inside me and concurred with what the therapist said. We need to find you one! Please email me at [e-mail] if you want to continue the conversation and have some assistance in locating a professional to see!

Take care, Joan

[SuzyQ in reply to Luckee]

Hi Joan,

Well I am eating my words...! I have searched previously with no success at all. However, tonight I searched Google again and THIS link came up.

pelvicphysiotherapy.com/lis...

It’s a list of all hands on Pelvic floor physiotherapists in Europe. I searched in England and found 3 ladies within a 25 mile radius.

One specifically does trigger point therapy for Pudendal Neuralgia!

Thank you for the encouragement I needed to have another look.

All best wishes to you, and for your appointment tomorrow.

Goodnight from the UK!

Suzy xx

[Debra13 in reply to Luckee]

Hello luckee

I went to physical therapy for almost 3 years straight. Sometimes it helped me and other times it would flare me up. I was going to her recently but had to stop because every time I went to her my pain would flare up again. I will try again in a few months. It seems to work better that way for me. Thank you Deb.

[SuzyQ]

Debra13 Many Congratulations on the occasion of your Wedding! 💖

So sorry to hear that your pain returned for the Honeymoon. I find that my pain gets worse when I have something nice to do, like going to a party or a family gathering; but on your wedding day??? That’s mean.

Sending you love and all best wishes, Suzy xx

[Debra13 in reply to SuzyQ]

Thank you. Yes. It did. And to boot it was so bad I was throwing up from it for a good 45 minutes until my pain medication kicked in and calmed it down somewhat. It wasn’t fully the way it was when the amniotic shot was working but it got a little better so I could at least finish out the night and cut the cake. Ugh. 😔. Thank you for the wishes. Deb.