Need help. Think I was misdiagnosed :(

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Need help. Think I was misdiagnosed :(

Postby littlepenny » 06 Feb 2023, 00:16

Hi everyone, first post here but I’ve lurked for awhile. I really appreciate the knowledge you all share.

(Bear with me as this requires a bit of a backstory)

About a year ago when I was on the toilet I experienced the dreaded “pooping glass” feeling that you all know so well for the first time. I had never experienced anything like it so brushed it off until it kept happening. Upon some googling I found this board as the symptoms seemed so consistent with anal fissure. I treated it at home the way many of us probably did the first time. Sitz baths, careful hygiene, soften stool, various creams and ointments. It went away after about 4 weeks and I thought I was in the clear. Until it came back a second time. I treated it the same, it went away. Then a third time. All of this happened over the course of 10 or 11 months.

In retrospect I probably should have gone to the doctor at some point but I had been successful in treating at home. Until this past December when it flared up a fourth time late in the month. In early January I made an appointment with a CRS. They unfortunately can’t get me in until March.

The pain this fourth time around has been unreal. I’ve barely been able to work or socialize. The spasms get longer and longer no matter what I do. Yesterday I spasmed for 10 hours. My previously successful treatments no longer work. I was never truly constipated to begin with, which makes the whole thing seem unfair. I’ve followed a pretty consistent, healthy pescatarian-Mediterranean and high-fiber diet for years. I have one bowel movement every day (I only eat twice a day) and it is consistently Bristol type 4, even softer and looser than that now as I have upped my fiber from 20g to at least 30g a day and added magnesium citrate. It doesn’t appear to make any difference.

Yesterday I was in such awful pain I made an appointment at my clinic for an after-hours visit. I went this morning. The urgent care doctor was very nice, but he took one very quick glance at my bum and told me I likely had a hemorrhoid. I was shocked as I had never heard of a hemorrhoid causing such pain. But then he said some things that I knew were not true. First, that “fissures don’t really come back like yours has, four times.” Uhmm.. don’t we wish. Second, he told me that a fissure always just looks like a cut and I have a little bump at the bottom of my anus. Yes… I do, I can feel it when I completely relax my rectum, but couldn’t that be a sentinel pile from a chronic fissure…? Third, he did say something like “looks like there may be a little cut there on top as well” (I assume he was talking about the pile). I was like - uhm, cut? Didn’t you say a fissure looks like a cut?!

Anyway, the reason I’m asking you all is because he prescribed me suppositories for my “hemorrhoid” and I don’t know whether to take them or not. Can these prescription hemorrhoid suppositories make a fissure worse? Should I just suck it up and continue suffering until I see the CRS in March? Or take the suppositories and see what happens? Get yet another appointment with an urgent care doctor? My regular PCP can’t see me until Feb 21st at the earliest.

I’m so exhausted and frustrated and I can’t imagine putting myself through this for 8-10 hours a day for another month at bare minimum. I’ve lost 7 pounds in 10 days as I’m afraid to eat anything but some oatmeal, puréed fruit, puréed lentil-veg soup, and an occasional bit of avocado. I choke down a protein shake that has chicory root fiber in it from time to time. I feel myself getting more and more afraid to eat. I’m trying really hard not to spiral.

If you are wondering my symptoms, it is mostly:

-very painful BM even when soft
-nothing too bad for about an hour or two, then the pain starts again. Alternates between sharp pains in the rectal area to severe throbbing. Radiates from the tailbone area all the way to the back of my pubic bone sometimes. Lasts anywhere from 5-10 hours. Then magically goes away, but occasionally leaves achiness/tenderness. Pain is so bad I can really only lay down and cry.
-no blood except a tiny bit on TP when the fissure (or whatever it is) first started.

What say you all? Hemorrhoid or fissure? Suppositories or no? :cry:
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Re: Need help. Think I was misdiagnosed :(

Postby patience_and_healing » 07 Feb 2023, 01:55

I had the same experience as yours. Was misdiagnosed with hemorrhoids and given hydrocortisone suppositories that did nothing for me. In the end I had Botox and ointments heal the fissure.

What are the contents of the suppositories you were prescribed? If steroidal, I would not recommend them, but also I'm not qualified to give medical advice on the internet.

What I would suggest is calling the specialist office and explain your situation and ask to be seen asap. Also ask if they have any suggestions for pain control.

Warm sitz baths may help you, as well as ibuprofen in limited amounts. Lidocaine is helpful as well, but is typically compounded for rectal use.

Hang in there, you will be healed from this even if everything seems hopeless right now. Take care.
8/16-12/16: Fissure due to antibiotics
5/17: Botox to sphincter, fissure healed
9/19: Trigger point injections and pudendal nerve block
11/19: Botox to pelvic floor
8/20: Botox to pelvic floor in new location.
On and off in pelvic physical therapy
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Re: Need help. Think I was misdiagnosed :(

Postby dmcff » 07 Feb 2023, 03:39

Welcome to the forum.

Unfortunately where AF is concerned misdiagnosis happens rather often. I think you might find that an EUA (examination under anaesthesia) would be helpful - could you ask an urgent care doctor for a referral to a specialist at a local hospital who could arrange this quickly for you?

Regarding pain control - you might ask about anticonvulsants like gabapentin (Neurontin, etc.) and pregabalin (Lyrica, etc.), which have been shown to be effective for the control of nerve pain. Several members of the forum, including myself, have reported good results from at least one of these.

Good luck with your treatment, and I hope you feel better soon.

By the way, on a general note, posters really need to indicate what country or part of the world they are from - conditions of healthcare vary so much globally, and it's hard to give a meaningful response otherwise.
2014 Anal fissure
2015 CAT, EUA, sigmoidoscopy, 2 MRI
2016 Pain severe then moderate to low
2017 Moderate pain
2018 Physical therapy, pain management
2019-20 Living with it
2021 Still AF
2022 Therapy, meditation
2023 Onward, up
2024 Looking for closure
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Re: Need help. Think I was misdiagnosed :(

Postby littlepenny » 07 Feb 2023, 14:20

Thank you both. I am in the US - Texas. I did contact the CRS office today to ask if there was absolutely any way I could be seen sooner and mentioned the pain. I will wait for a reply.

The suppositories are hydrocortisone. I ordered some Calmol 4 ones which just arrived today, I saw someone else here say those helped without irritation.. this is just miserable. The lidocaine the urgent care doc gave me is just regular 5% lidocaine cream. I tried it last night but it didn’t seem to do much of anything.
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Re: Need help. Think I was misdiagnosed :(

Postby lastCall » 09 Feb 2023, 09:24

Sounds similar to some of my experience (also USA). Symptoms were dismissed as hemerrhoids by some primary care providers, I was prescribed diet/lifestyle actions I had already been doing for years, I had cosmic levels of pain despite "perfect" bowel movements. I spent a lot of time trying to heal myself with lifestyle stuff and standard medical treatments. I took a month off of work at one point because of the pain.

Eventually I saw a CRS and he confirmed a fissure with a 10 second examination. When he later did surgery he found another one (so I had one in the front, one in the back) and two sentinel piles which were contributing to my pain. Now I am a lot better.

Obviously I can't diagnose over the internet, or at all :), but I definitely wish I had gotten beyond primary care sooner. Hang in there!
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Re: Need help. Think I was misdiagnosed :(

Postby Rich44 » 10 Feb 2023, 22:01

A lot of times primary care, general surgeons and even gastroenterologists can get it wrong. It's understandable for people not to want to run to a colorectal surgeon as they are not called. Maybe if they were still called proctologists people wouldn't be as afraid (thinking surgeon automatically means surgery).

I used hydrocortisone suppositories for pain so if you have them, use them! The urgent care doctor sounds like they skipped the chapter on anal fissures. You need to see a CRS asap. Here's what I suggest: Tell the CRS staff that you want to be on a standby list in case someone cancels (and they always do) that way you'll get in sooner. The more you stress about this, the harder it will be to heal. Do the sitz baths, use the creams, use the suppositories, eat the same diet you have been. You do not want your stool too soft and loose. That will make it worse. Bulky and soft is the way to go.
Fissure June 2014 - Oct 2020
Botox, skin tag removed - Feb 2015
Levator Ani Sep 2014 - Feb 2016 (left job, cured!)
LIS, skin tags removed - Oct 2020
Fissure 100% healed - Nov 2020
Still healed as of November 2023
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