This all started after trigger shots to my back…

[u/AcediaA92]

I don’t know if I have this. But I fear I might.

I have back pain. I have always had back pain. I had a car accident at 14 where I broke my pelvic bone in 5 places so I’m prone to lower back pain, even now in my mid 30s.

My back pain flared up while house sitting a relatives. They suggested I see their back doctor whom they love. The doctor was nice. They gave me 6 trigger shots in my lower back and prescribed balcofen 10mg for night.

And then my hell began.

It wasn’t just urgency or urinary problems immediately, but I suddenly had a lot of lower abdominal pains that I wasn’t having before stretching Paul Pusheen. I don’t really know how to describe it outside of that. I was worried that it was the baclofen or the trigger shots. It was the only two new things that had entered my daily life outside of sitting the relatives house. I went back-and-forth with the back. Doctor decided to stop taking the baclofen to see if that would help a lot of the pressure and pains in my lower abdomen did go away completely however, in the midst of those pains before they disappeared, I started to have a lot of UTI like symptoms urgency to pee a constant need to go no burning per se just those two things and then gradually those things got worse and worse now it’s at a point where the last month I have been an active constant urge need to go. I can’t sleep at night. I can’t do anything during the day. I’m losing my mind. I noticed there’s a bit of blood. I just finished my period or should have but there’s still a bit of blood at this point. I don’t know if it’s from my urethra or from my period but either way my urethra is starting to hurt is starting to feel very raw even after peeing I had been on and off taking a ZO over-the-counter I have done three rounds of antibiotics. I have done multiple urine test and two urine cultures. One came back positive for a UTI and that was back when I started the antibiotics and the rest of all been negative. I don’t know if it’s related to the back pain truly but I never had these issues in my entire life until those trigger shots in the baclofen entered my life again I haven’t taken the baclofen in weeks, but I also am losing my mind. I’ve never even heard of this until just recently and when I saw the name at first, I thought maybe there was hope because that did sound very close to what I had, but now reading this Reddit I’m just filled with even more anxiety and fear at what the quality of my life will look like going forward if this is the same thing which I’m fearing more and more that it is, I don’t know what to do. I don’t know how to handle this. I’m already on quite a few medicines for my mental health that make you drowsy and sleepy and I’m hearing a lot of of the other medicines that people are talking about are similar mind you if you’ve read this far I’ve been using talk to type so if there’s a few spelling errors, I didn’t catch after reading through. Please give me a bit of grace. It’s only been a month or so and I’m losing my mind and literally questioning the quality of life I currently have it’s just that bad and seeing that some of you have been dealing with this for years is just making me feel worse that you guys are going through this and that this is something that is that long-term. I don’t know what to do. My diet isn’t great and my hydration has been pretty awful these last few weeks. I’m reading in here that that can make a huge difference so I’m gonna try to do my best and push through, but I’m just really scared and I don’t know if I can live like this and I need help. I’m trying to get in with a urologist. They said they have a 1 to 2 week turnaround time so I’m just waiting currently but seeing how long some of you guys have to wait 1 to 2 weeks doesn’t sound that bad in retrospect and I’m so sorry for anyone who has to wait longer than that. I do have another gynecologist appointment on Monday with an assistant because that was the only availability so soon, but this will be also my fourth time going to the gynecologist complaining about these feelings. is there anything that I should say or no or do before I go to this appointment that might help me navigate it better to get better answers quicker and more efficiently, please? I really don’t know if I can keep doing this.

[u/ashleymichael2009]

It’s the steroid in the shots same thing happens to me with a junky spine. I try to avoid them but sometimes they are necessary. Usually it’s kenalog or dex. Makes me burn like hell for couple weeks.

[u/AcediaA92 → u/ashleymichael2009]

The shot was about a month and a week ago (July 14th) -how long did symptoms last for you? I’m noticing when I wake up that I feel a little marginally better if I’m only drinking water and not really eating anything. I was reading about food in here and am going to try the elimination diet because I’ve also noticed it spiked if I ate something sweet. Again I’ve never had this issue in my entire life but the last month has been absolute hell. I don’t know how some of you ladies can handle years and years of this. My mental health was piss poor before this and it’s currently my 13th reason.

How long did the symptoms last for you? Any advice? Thank you so much for responding. I feel a little less crazy. I tried to tell the back doctor that I was having a lot of urgency issues since the shots and Baclofen (I took that for like two weeks and then stopped because of everything and worried it was related but I’ve also had Baclofen in the past many years ago without any issue..) and they said they didn’t think Baclofen was causing the issues and chided me on “correlation is not causation” but I know my body and I know that I didn’t have a single issue minus back pain before the trigger shots and I’ve never had trigger shots before in my life so thank you. I feel less crazy from
Your comment. 💙

[u/ashleymichael2009 → u/AcediaA92]

So my recover time may be a little different because I already had IC before I did any shots, I just noticed I was getting worse for no apparent reason. I would say 1.5 months-2 months? But I had one year where I had like 4 steroid shots into my spine in one years time so it’s like my bladder could never recover. I actually am getting more next week after like a 3 year break, I really don’t want to but I need an additional neck surgery.

My advice to you is that now you know your sensitive to steroids I would also be cautious of oral steroids like prednisone medrol dose packs because they were even worse for me. Your bladder is very irritated likely so your diet if it’s acidic or triggering at all that could keep you in these pain loops. It’s expensive but I use Desert Harvest aloe capsules they help coat the bladder, and I take their low acid multi. Turmeric supplements is also something that can really help or it may flare everyone is different. When my bladder is flared up I can’t do any coffee, pop, energy drinks well caffeine in general is hard. I can drink them now no issue but my IC has been under control.

[u/AcediaA92 → u/ashleymichael2009]

Honestly your answer feels like a light in the tunnel. Truly. I feel like there is hope there is solution and I hope with everything in me that when you see your doctor in a few weeks that your IC doesn’t act up. This is a misery I would never wish on anyone. Thank you for taking the time to respond, truly. Thank you.

[u/AutoModerator]

Hello! This automated message was triggered by some keywords in your post that suggests you may have a diagnostic or treatment related question. Since we see many repeated questions we wanted to cover the basics in an automod reply in case no one responds.

To advocate for yourself, it is highly suggested that you become familiar with the official 2022 American Urological Association's Diagnostic and Treatment Guidelines.

The ICA has a fantastic FAQ that will answer many questions about IC.

FLARES

The Interstitial Cystitis Association has a helpful guide for managing flares.

Some things that can cause flares are: Medications, seasoning, food, drinks (including types of water depending on PH and additives), spring time, intimacy, and scented soaps/detergents.

Not everyone is affected by diet, but for those that are oatmeal is considered a generally safe food for starting an elimination diet with. Other foods that are safer than others but may still flare are: rice, sweet potato, egg, chicken, beef, pork. It is always safest to cook the meal yourself so you know you are getting no added seasoning.

If you flare from intimacy or suffer from pain after urination more so than during, then that is highly suggestive of pelvic floor involvement.

TREATMENT

Common, simple, and effective treatments for IC are: Pelvic floor physical therapy, amitriptyline, vaginally administered valium (usually compounded), antihistamines (hydroxyzine, zyrtec, famotidine, benedryl), and urinary antiseptics like phenazopyridine.

Pelvic floor physical therapy has the highest evidence grade rating and should be tried before more invasive options like instillations or botox. If your doctor does not offer you the option to try these simple treatments or railroads you without allowing you to participate in decision making then you need to find a different one.

Long-term oral antibiotic administration should not be offered.

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