u/LowBet9130

Losing hope... My last resort for urethral pain and bladder spasms is to try hydrodistension and urethral botox. Can anyone give me hope it has worked for them?

Losing hope... My last resort for urethral pain and bladder spasms is to try hydrodistension and urethral botox. Can anyone give me hope it has worked for them?

My main issues are PGAD, pudendal neuralgia, hypertonic pelvic floor, and urethral pain.

Two weeks ago, my pelvic specialist did 100u botox in the levator ani and obturators, started me on cymbalta, I also began microdosing tirzepatide, using vaginal dilators 3x/week and TENS unit, and have been going to PT weekly now.

The PGAD has almost disappeared! Very tolerable now.

The urethral pain and bulbospongiosus muscle are still quite painful with hard knots. What is interesting is the urethral pain did not respond to the pudendal blocks, so I may have to get bladder instillations/botox/hydrodistension, but I really don't want to do this...

Any input is much appreciated!

My main issues are PGAD, pudendal neuralgia, hypertonic pelvic floor, and urethral pain.

Two weeks ago, my pelvic specialist did 100u botox in the levator ani and obturators, started me on cymbalta, I also began microdosing tirzepatide, using vaginal dilators 3x/week and TENS unit, and have been going to PT weekly now.

The PGAD has almost disappeared! Very tolerable now.

The urethral pain and bulbospongiosus muscle are still quite painful with hard knots. What is interesting is the urethral pain did not respond to the pudendal blocks, so I may have to get bladder instillations/botox/hydrodistension, but I really don't want to do this...

Any input is much appreciated!

Anyone here who had PT focus more on their hips, spine, feet, posture, etc., to correct vaginal and/or bladder pain?

I have many issues (endo, adeno, May-Thurner, scoliosis, heds), but my left hip/leg pain/numbness started when my vaginal/urethral pain began, and multiple MDs have commented on my hips/legs not being equal. I think I need to focus on this more than internal work, because that has not helped at all.

Is Pelvic Rehabilitation Medicine (the company) a scam? There are no Google reviews to even possibly view, and something feels off... I have my first appointment with them next week, but now I'm not so sure.

PLEASE, somebody, give me HOPE. I have failed all medications for IC but have not tried instillations or Botox yet (will start next week), and I am panicking that I will never heal...

-hx: I have DIE endo and multiple other issues in the same family of conditions.

This is the first time I have ever experienced this, and forgive me because I know how common it is for women...

I am a medical provider myself with DIE endo, adeno, pcos, May Thurner, chronic hives, spinal compressions, and more. Today I went in to see the doctor who has been performing diagnostic pudenal and sciatic nerve blocks, and he, instead of explaining his thought process and treatment plan for my next injection, asked me, "Are you in cognitive behavior therapy? I think you can take away this pain by thinking differently".

First of all, I understand there is true value in pain reprocessing, so I will not dismiss that. However, my recent surgical report documents endo strangling my ureters, all over my pelvic nerves, and my MRI shows spinal compressions with severe iliac vein compression. PLEASE tell me how mental health therapy is your go-to approach right now, when I am having to call out of work due to my pain and other (very embarrassing PGAD) symptoms. I feel like he thinks my PGAD is fabricated in some way, so I must be looking for attention.

So exhausted, in so much pain, barely holding on, please Jesus give me some rest.

This is the first time I have ever experienced this, and forgive me because I know how common it is for women...

I am a medical provider myself with DIE endo, adeno, pcos, May Thurner, chronic hives, spinal compressions, and more. Today I went in to see the doctor who has been performing diagnostic pudenal and sciatic nerve blocks, and he, instead of explaining his thought process and treatment plan for my next injection, asked me, "Are you in cognitive behavior therapy? I think you can take away this pain by thinking differently".

First of all, I understand there is true value in pain reprocessing, so I will not dismiss that. However, my recent surgical report documents endo strangling my ureters, all over my pelvic nerves, and my MRI shows spinal compressions with severe iliac vein compression. PLEASE tell me how mental health therapy is your go-to approach right now, when I am having to call out of work due to my pain and other (very embarrassing PGAD) symptoms. I feel like he thinks my PGAD is fabricated in some way, so I must be looking for attention.

So exhausted, in so much pain, barely holding on, please Jesus give me some rest.

This is a post of hope and discovery:

I am a medical provider myself who has endometriosis/adenomyosis/PCOS/May Thurner/pgad/interstitial cystitis... the works.

Out of complete desperation and panic from having 100 involuntary orgasms in 12 hours at the clinic, I went to an ER to get a CT abdomen/pelvis with contrast. Of course, the impression was largely negative, so I called my interventional radiologist, gave him the CD, and he found that my iliac vein has drained down around my S2-S3 so badly that the nerves in that area are understandably angry (I have a nickel allergy, so I cannot get a stent).

My symptoms are explained. I am not crazy. I now have a path moving forward, including injections and radio frequency ablations.

Do not stop advocating for yourself; be persistent.

I had dry needling done for the first time in my Iliopsoas and transverse perineal muscles yesterday. Today, those muscles are a bit swollen and sore, but somehow less painful than my baseline, and they just feel like I worked them out. Is this a good sign? My main symptoms are PGAD and urethral pain (hypertonic PF).

I have hard, painful, pea-sized lumps in their muscles? Mine are between the bulbocavernosus and transverse perineal muscles.

My doctor thinks they are trigger points, but they've never been scanned in any way. Does anyone else have these and have more information?

They injected mine with steroids but it didn't make a change.

Has anyone actually gotten their life back and recovered? I am losing hope.

I have hard, painful, pea-sized lumps in their muscles? Mine are between the bulbocavernosus and transverse perineal muscles.

My doctor thinks they are trigger points, but they've never been scanned in any way. Does anyone else have these and have more information?

They injected mine with steroids but it didn't make a change.

Anyone here tried and had success with botox in their pelvic floor or bladder?

I have severe endo/adeno/pcos/pcs but my most debilitating symptom is pain to my urethra and anterior pelvic wall. I've made some progress, but will be starting botox injections soon and looking to hear success stories.

I have a lot of painful pelvic muscle knots that haven't improved with 10 months of PT or steroid injections, but have gotten some relief with nortriptyline and vaginal suppositories.

Does anyone here have bladder and urethral pain, that did not get an instillation, but was helped by getting pelvic floor botox injections?

Does anyone here have bladder and urethral pain, that did not get an instillation, but was helped by getting pelvic floor botox injections?

How long until you noticed Nortriptyline really working?

My main symptom is pain in my urethra, to movement, touch, and urination. Has anyone had this, and what has helped?

I am scheduled to try bladder instillations and Botox next, but I have tried so many things without luck. Hx adeno/endo/pcos/heds

I've taken one dose of nortriptyline, and I think it may already be working. Has this happened to anyone else so soon?

I took it years ago for IBS, and it absolutely did work in three days. I'm just in shock because this vulva/urethra pain I've had has not responded to anything else to this degree, especially so soon (multiple nerve blocks, 10 months of pelvic PT, vaginal suppositories, Lyrica, ketamine, etc.).