Doctors have given up on me after 3 years

[volans]

Walking is generally better for me than standing still. When I stand still I have an increase in pain and pressure.

Stephanies

Does the pain and pressure increase in the pelvis? For me, my pelvic pain stays around baseline and it's my back that increases in pain when standing.

[stephanies]

Volans,

I don’t have back pain. All my pain and pressure is in the pelvis.

Stephanies

[Violet M]

I agree with Patty that most likely your symptoms are all related. The pudendal nerve runs between the levator ani muscles and the obturator internus so if the LA muscles are in spasm it would likely irritate the pudendal nerve -- and not necessarily the main branch but possible some of the smaller branches which could explain why you don't have perineal pain.

A general rule of thumb is to try conservative treatments before progressing to more invasive treatments. If the conservative treatments don't help, then you have to decide if it is worth it to pursue further treatments. There have been other patients who have had Botox to the levator ani muscles so it might be worth a try especially if your practitioner can assure you it's not likely to cause incontinence. I have known a few people who reacted badly to Botox but most people don't have a problem with it. Keep in mind that it is a temporary solution and is not typically a cure. I did not try Botox because my physician said it's just a temporary solution but if you are in a lot of pain, a temporary solution can be very helpful.

Violet

[volans]

I agree with Patty that most likely your symptoms are all related. The pudendal nerve runs between the levator ani muscles and the obturator internus so if the LA muscles are in spasm it would likely irritate the pudendal nerve -- and not necessarily the main branch but possible some of the smaller branches which could explain why you don't have perineal pain.

A general rule of thumb is to try conservative treatments before progressing to more invasive treatments. If the conservative treatments don't help, then you have to decide if it is worth it to pursue further treatments. There have been other patients who have had Botox to the levator ani muscles so it might be worth a try especially if your practitioner can assure you it's not likely to cause incontinence. I have known a few people who reacted badly to Botox but most people don't have a problem with it. Keep in mind that it is a temporary solution and is not typically a cure. I did not try Botox because my physician said it's just a temporary solution but if you are in a lot of pain, a temporary solution can be very helpful.

Violet

I saw my pelvic doctor again and he said he never suggested botox before because it's not covered by OHIP in Canada. And if it's just temporary and not a cure, I don't feel like spending 5 grand on a few months of temporary relief. I told him that I thought the main culprit is a tight puborectalis muscle and he said that it could be nerve irritation in the piriformis muscle that is then causing the puborectalis muscle to tighten, or something like that. We only spoke for 5 or 10 minutes so I wasn't completely on the same page with his thought process. He thinks I would be a good candidate for a neurostimulator for the sacral nerve, so he sent a referral to another doctor who does those. I'm not sure if that will help me, because from a brief reading it seems like they are most commonly used on patients to help with fecal and urinary incontinence, whereas I have the opposite problem; too much continence and tight muscles. But I'm running out of options so i'll see how that goes.

I

[April]

Hi Volans,

I'm so sorry about your situation. But I think stimulators are a good option. I plan to get one if my surgery doesn't remove all my pain. They can be put on the spine, but they can also be put on the dorsal root ganglion (DRGs) or directly on the pudendal nerve, so there are several options. I've heard of successes with all three options, though, as with all treatments, I've also heard of failures with all three. You can do a little searching on this site to read some stories.

April

[volans]

I was supposed to get botox this Wednesday, something I had been waiting months for, and it's cancelled as all elective procedures in this hospital are postponed indefinitely. I also have a procedure for a neuromodulator in late April that will most likely be cancelled too as coronavirus cases flood the hospitals.

I've had this pain for so long and I was counting down the days to this botox procedure like it was Christmas and now.... it's gone. Does botox have a long shelf life? I paid $457 for this and it's just sitting in my fridge.

[stephanies]

I am sorry your procedure was cancelled. I think the Botox can last for a while if unopened, but definitely check with your doctor. Keep us posted.

Stephanies

[Billy11]

Hi Volan,
My name is Billy from Thailand. My symptoms are exactly like yours. I cant stand, sit , lie walk for long periods without pain. Deep breathing exacerbates the pain also. Im mostly bedridden everyday because its the only position i feel less pain. My pain runs down from my groin to my toe. My toe curls everyday. I think my part of my pudendal and my cluneal nerves are indented. Im on gabapentin everyday 1200 mg in the morning as well as night. My brain is foggy all the time. I have suicidal ideations everyday and i believe if there was a gun next to me i would have committed suicide already.

[maurier]

Hello all,
first off sorry for my english but it's not my first language.
I would like to address Volans problems since I went through the same issues.
Volans I'm not sure all the medications that you have tried.
But I would like to ask you for a favour. Have you tried over the counter Advil?
If not do me a favor. Grab the highest dosage of advil liquid gel (I believe it's 500mg) and just take one and please let me know if that removes the pain.
One tablet of advil is not going to kill you or harm you if you take it just once. ( if you use to much for prolonged period of time can have bad consequences on the lining of your stomach).
Let me know if that makes the pain go away. It should work within 30 minutes or so.

[maurier]

Sorry for double posting but forgot to say few more things.
In my situation and it was really bad , advil made my pain go from 10 to 1 and in some cases to 0.
But after 2 years of taking it I had to stop because it was destroying the lining in my stomach and I had developed an ulcer.
My symptoms:

1) Burning inside my anus (especially left side not sure why) burning so intense felt like a hot iron was inside there.
2) tingling and pressure under my testicles. I was constantly applying pressure with my hands under there to relieve the pain.
3) the pain was shooting down my left leg all the way to my feet.
4) when walking I could feel like I had a ball under my left foot.
5) increased sense of urination.
6) tingling itching on the tip of my penis.
7) I couldn't stand or sit for more then a minute. I would get relieve from squatting.
8) hot bath also helped.

I came real close to killing my self. I couldn't take it anymore.
Today I'm not 100% and i dont think I ever will be but I'm 85% better and able to live a normal life. I do have flare ups from time to time but nothing like before.
You probably wondering what did I do ? and the answear is I have no clue lol
What I believe happened is the advil took the pain away and allowed me to do regular things and in the mean time i stopped doing what caused this to begin with ( I will tell you eventually what started this for me) and slowly my body somehow healed.
Like I said its not 100% but it's more then good now compared to before.
Please remove any negative toughts from you head and stay strong and I promise you will get a lot better.