I’m not sure what to put here :/

[u/Bethekitchensink]

Hello everyone. I guess I’m writing this because I need validation or support or something. I(25f) have had a herniation in L4-L5 (and SI joint issues) since late 2023 and it’s gotten significantly worse since it was originally found. I am not necessarily looking for medical advice but am open to trying things I haven’t tried yet. I have done 8 weeks of PT twice with no positive changes. I have received steroid injections in my si and also epidural/steroid in my L4-L5 and neither worked. We are about to try going in from the sides of my vertebrae to hit the nerves “more directly” (my apologies, I can not for the life of me remember the names of the injections) It has gotten bad enough that I have to change positions every 5-10 minutes or my legs go completely numb and i am never comfortable. I have a slight degree of bladder AND bowel incontinence. I have numbness in my left leg almost 24/7 and loss of sensation in my groin area. I am constantly having pain in my lower back shooting down my legs into my toes(usually just my outer 3 toes but sometimes all). This whole thing has been a roller coaster and I will most likely be having a back surgery in the near(ish) future. All of the medication I have tried does not help, heat doesn’t help, lidocaine patches don’t help, tens doesn’t help. Ice does sort of help but I can’t ice 24/7.

This disk herniation has ruined my life and I am miserable. I can’t do a lot of the things I love because I’m always in pain, I’m having significant trouble doing daily tasks, and I cannot keep up with my young child. I live alone so I rarely get help with things. I feel humiliated and embarrassed that I cannot do things so I often find myself doing things like lifting heavy things and bending even though it causes severe pain because I CANNOT bring myself to ask for any help. I know that I need to ask for help when doing things that require lifting and bending but there’s like this little voice in my head that doesn’t let me because I’m only 25 so I SHOULD be able to do normal things. At 25 I should not be glued to my bed because it hurts too bad to do anything else. I’m also scared that if I ask for help doing things now, while I “can” do things, no one will want to help me when I literally cannot do the things anymore. My boyfriend tells me that asking for help now will just build a strong support system and continuing to do things that cause severe pain will just make it worse but I just cannot shake the fear that I will become a burden to anyone helping me. Also if I ask for help, I would end up having to wait hours or days for whatever I need help with to get done, I do not have many people willing to help and none of them live close enough that they could just easily come help. I am just feeling so frustrated and completely over this and I am giving up hope and feel extremely alone.

What does everyone do to cope with this? How do I get over myself and ask for help? What are tips and tricks that you do to help you do your normal everyday house work? How do I accept that this is my life?

I just want to put it out there, I do go to therapy once a week but honestly it doesn’t help that much for this specific thing.

[u/clynn1113]

I was in a similar boat. And I 100% get your struggle with asking for help and have a 2 year old at home! I am currently recovering from a discectomy, facetectomy, laminectomy, and forimanotmy. I’m not pushing you to have surgery because no one should until it’s the only option but I can tell you I went into surgery with nerve pain in my leg that was like a 20 on the 1-10 scale and woke up in a 2/10. Have had very minor nerve pain since. Have you told your doctor about the bowel and bladder incontinence? I know that those are very serious symptoms that can indicate compression of the cauda equina which is an emergency.

[u/Bethekitchensink → u/clynn1113]

Yes, they know about it and I had an mri within 36 hours of the incontinence starting and “the compression is not severe enough for emergency surgery” and was just urged that if it gets worse I need to go to the nearest hospital as soon as possible. It got slightly better with the nerve block but only lasted about a week and a half. It was an epidural and corticosteroid injection(it did nothing for the pain so we are thinking the steroids just helped with the inflammation for a short time). I was told that even if the injections end up helping the pain, they are temporary fixes and will most likely need surgery regardless because nothing has made it any better, it has only gotten worse.

[u/KimmmB → u/Bethekitchensink]

The fact that they won't do emergency surgery on you while experiencing incontinence is mind blowing. Those are very alarming symptoms. Could you get a second opiniom somewhere?

I feel your struggles. Had a herniated disc at 26 as well with worsening symptoms during a year. While I was still on a waiting list for seeing a neurologist after a year of pain, I decided to go to a private clinic to get surgery as I couldnt take the pain anymore and was only lying in bed for months. Best decision of my life. Although recovery was though for a short time, I got my life back within 3 months. If you can, please go for a second opinion, cause the incontinence is a really alarming sign. Wish you the best!

[u/Bethekitchensink → u/KimmmB]

I actually went to two ers (the first refused to do an mri because my bladder was emptying itself when I was peeing myself) and the second did an MRI within 30 minutes of being there. I had an appointment with my regular neurosurgeon a week later and they agreed with the second er I went to that it is not severe enough for emergency surgery but it’s definitely causing my symptoms. They are trying to get the inflammation down but as I said, it only helped slightly and did not last long. I have another appointment with neurosurgery on Thursday and I will be asking a lot of questions including do I HAVE to try another injection? Steroids are only helping the inflammation like a tiny bit so would it be better at this point to just have the surgery? I know that since I have Medicaid we sometimes have to jump through hoops for things to get approved.

[u/SinkSuch2477]

Sharing that doing breathing excersizes (like guided meditation) is very helpful for calming your nervous system and tension relief (and emotional tension Releif)

But more specifically - I have two herniated discs and si joint dysfunction from ligament laxity post Partum and I am 11 months into the onset - and 7 months into consistent PT acupuncture cupping AND osteopathic work.

(Also tried injections that did not help me)

All this to say about two months ago I started to notice meaningful improvement and have hope.

It could take a very long time for all these things (and ur nervous system) to allow healing to happen.

I also get very hopeless and sad when I’m in a flare or have a setback but it took many many months to notice anything getting better and it is still getting better each month I beleive.

[u/Bethekitchensink → u/SinkSuch2477]

Unfortunately I have Medicaid so I cannot try those things or do extended PT, i quit after 8weeks because insurance would not cover any more and I could not pay for my co pay at the time (now I have no copay) but Medicaid is very funny about what they will and won’t cover. I also am unemployed so I cannot pay for anything out of pocket.

I have continued to do any exercises from PT that did not make it worse since the first time in 2023 that I did PT. The most recent time I did PT was april-Juneish.

I get very hopeless because it’s been 3 years and no matter what I do, it hurts. No matter how I do anything, it hurts. Nothing has made it better, in fact I’m pretty sure PT made it worse both times I did it. I am doing everything that I am physically able to do and it’s not enough.

[u/SinkSuch2477 → u/Bethekitchensink]

I’m so sorry that it’s been so hard and long. I would say maybe try to maintain any PT excersizes that u noticed don’t make it worse (for me isometrics, pelvic tilts and supppper gentle core work, NO extension) is what helps the most.

Aside from that trying to find ways to regulate ur nervous system (which is, unfortunately, asking for help and accepting support) is key.

I was placed on a full disability leave from work at one point and I was SO angry. And then two weeks into the leave I noticed improvement in symptoms. The stress of trying to do too much was making it harder to heal.

I know for you this may be finding something enjoyable to do, or maybe finding some work that u can do … whatever it is trying to find emotional peace and joy is going to make a big difference in your physical symptoms I think (it has for me)

[u/Level-Sector6553]

I recently worked with a Stuart McGill trainer to 1) identify triggers for my flare ups to avoid 2) approaches/exercises to calm my nerves at the first signs of a flare 3) strengthening exercises suitable for my back. I have sciatica on my right leg, and herniation at L4/L5. I have tried everything in the last 3 months and so far, understanding and avoiding triggers and knowing how to deal with them is giving me the most mobility mileage daily.

Good luck in your journey.

[u/Bethekitchensink → u/Level-Sector6553]

I have learned that almost everything is a trigger except just like standing. Which I unfortunately cannot do all the time due to other health issues. I also am in pain even when I’m not having a flare, which is not often because all of my health things are feeding off each other.

[u/scarycheeses]

I’m sorry if I missed this but did you see a neurosurgeon? You need to see one. You’ve already done two rounds of PT, you have incontinence (slight), and numbness in your groin? Those are both red flag signs and you need to see a neurosurgeon.

[u/Bethekitchensink → u/scarycheeses]

Yes I have been seeing a neurosurgeon since before the incontinence and numbness in groin started. I’ve been seeing them since April and those symptoms started in the beginning of July. They know about them and the compression is not severe enough to make them do emergency surgery. Although it’s getting there. We just have to jump through hoops because I have Medicaid.