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Am I In The Right Place?

Posted by Pixie

I need to scream and shout and yell at the top of my lungs. I need to be heard. I need to get things off my chest. These posts will be TL;DR and I'm tired of not being heard. I want people t o hear what I have to say. To listen to what happened to me and how wrong all this is. I know there are people out there dealing with things way worse than what I am, I know there is the pain and suffering in Ukraine....and in other parts of the world, I know I'm just a nobody and no one should really care outside my friends and family. Yet I still feel the need. I have to put it out there. Maybe ----in hopes that someone WILL take the time, someone will identify with parts of my story, someone might learn something, or someone might be able to help heal this pain and anger.

I feel like I have been tortured over the past two years only to end up being beaten down and smothered with nothing but more beatings in the near future. All because two doctors chose not to listen to me. Not to believe me. To focus on the easy stuff and ignore my words. They put me down this path that I am on now. I went to them for help and this is what it got me.

The first doctor was my primary care physician. I usually only saw her for my thyroid medication or my diverticulitis, the first of which I need to live as I have no thyroid, and the second would be when I couldn't handle the issue from home any longer. I tell you this because I want you to understand that I don't go running to the doctors office for every little thing, that I'm not a sick person or anyone with tons of ailments. I was overweight (Obese) but I didn't have diabetes, heart issues, or high blood pressure. I smoke but I had no breathing issues. I only went to the doctor when things became more than I could handle from home. When over-the-counter meds were not enough, when I didn't know what was wrong and couldn't figure it out. I went as little as possible and when I did go there was usually a good a reason.

The reason for this visit?

Well, back in 2020, about 11 months before, I started having more stomach pain, not just in the area of my diverticulitus flare up, but all through my digestive system. Stomach would hurt and cramp, sharp pains would shoot from side to side across my waist. Sometimes it felt like I was digesting glass or something. Just all these new and added issues on top of more diverticula pain. I tried my "go to" diet of just liquids and sometimes would get some relief but other times putting anything at all on my stomach hurt to process through my system. I cut out food after food after food trying to find the triggers. One thing I decided to do was to lose weight and get more active and try to tighten up more core muscles thinking that would fix it. And in a sense it did. I then started to have bouts of feeling like my entire large intestine quit working. No pain. And no action. It was like it decided to go to sleep or something and I couldn't pass any stool because nothing was moving.

During this time Covid hits and we shut down here in my state for a couple months and guess who get's a urinary tract infection? Me! of course. smh So I called up my doctors office hoping they wouldn't make me come in to do a urine test to get an antibiotic because I was afraid of catching covid. I was high risk because I smoked and was 100lbs overweight according to "medical" standards and it really wasn't necessary. I was 50 years old and have had several UTI's over my life, my first one at 6 years old. (Thanks Mr. Bubble Bubble Bath) I know what they feel like. All women know what they feel like after they have had one. I asked if we could do a tele-visit or something so I didn't have to leave my house to pee in a cup for them to tell me I had a UTI and call me in a prescription. But that wasn't an option so again I went the route of treating from home with some of the OTC med available and I did find relief. For a week or two. Then it would come back again and again and again.

I was beginning to live in the bathroom. If I wasn't trying to have a bowel movement when everything seemed to stop, I was pissing little dribbles of fire. I was miserable to put it lightly. And then the most bizarre thing happened.......I have AIR come out of my urethra when I peed. The first time it happened I thought, "Impossible." and blamed it on my 20;b weight loss and getting older or just some freak air pocket some how. I had never heard of air coming out of there EVER, so it was easy to make other excuses. But it happened again. I could tell where it was coming from. I could feel it, you could hear it. It was a puff of air followed by a bubbling sound and my body feeling like it was pushing something out of that tiny little hole. This time I looked it up on the computer and the first thing I read said that women can have a certain type of UTI that can imbed in the bladder wall and multiply to the point of creating gas in the bladder and that gas gets expelled during urination. Did you know that? I had no clue, but it made perfect sense, right? I had been fighting this UTI for over 10 months and could never get rid of it. Of course it had time to embed, of course it was in a large enough number to create gas. It was time to go pee in the damn cup.

So I make an appointment. I was so worn out from dealing with all this on my own for so, so, long that I could not wait to get in there and get some relief. I was excited and the appointment started out great. Their scales lined up with mine at home. By this time I had lost 24 lbs and this let me know that my scale was on par and solidified my 24 lbs gone. Woohoo! And when the doctor came in the first thing she said was "Oh it looks like you've lost 8 lbs since your last visit." And I jump in and say, "Well, I actually put on weight after our last visit and I'm down 24lbs all together now!" I was smiling from ear to ear. Not only had I dropped all that extra weight, I had even gone below that last visit. I was proud!

Her comment to me was, "Well, I can only go by what it says here."

Like, what? No, "great job", "keep it up", "congrats"? "I can only go by what it says here." ..... meaning what? I was confused. But I tried to just shake it off when she asked what had brought me in and began explaining the stomach issues. An almost constant pain in my diverticula spot, nausea, shooting pains across my mid-section, tightness down my left side, and if it wasn't hurting and causing me pain then it was like the whole thing shut down and I couldn't go to the bathroom. Her diagnosis was IBS with constipation and told me to drink more water, start taking a fiber supplement while increasing my activity. ~Maybe do laps around my home if I didn't want to go out and walk. ~ That didn't sit to well with me because I had read about that and it wasn't like I had that "type" of constipation. I felt like there was more to it than that. It really felt like everything just stopped moving. Like nothing would happen. No movement, no urges to go, no gurgling. Almost like it was numb along the lower part of my stomach. It wasn't struggling to pass these hard dry stools that sat there and refused to come out. My bowel movements had changed over this time but they got smaller. and stayed just as soft as they had been. They were just non-existant when I went through that numbing period.

IBS also didn't address my constant pain in my lower left side either and it just seemed to easy, you know. Just an umbrella term for something they didn't really understand and ignore the parts that don't fit under it. I pushed a little and explained that I had changed my diet, taken out a lot of different foods, increased my water, ate smaller portions. and had increased my activities and none of that was helping me.  I was losing weight but not getting any relief. I was drinking more water but not getting any relief. She then tells me that I could drive myself crazy trying to figure out what foods trigger it and added on a prescription anti-spasmatic for me to take when the pain through my stomach started to act up.

I still wasn't happy with that. I still felt like she wasn't getting what I was trying to say and I did the craziest thing I ever thought I'd do in a doctor's office. I ASKED FOR a colonoscopy! smh  Can you believe that? lol Who does that? But I just had to have someone look inside there and find out what was going on. Something was wrong in there and I didn't know what it was but it was painful and it was too much and way to often. I was sure I needed more than just anti-spaz pills. Because of my age she said I was overdue for one anyway and agreed to give me a referral. That made me feel a little better. Maybe who ever did the procedure could see what was happening and give me a better shot at relief.

Then I brought up the UTI. I explained the symptioms, paiful urination, feeling like I had to go all the time only to have it trickle out of me, up several times a night, spending so much time in the bathroom and then I said, "And now I've started passing air out when I pee." I said softly. I still felt unsure about it even though I had read about the UTI's causing it. I just had never heard of such a thing so it was hard to say without feeling embarassed. She looks at me and asks, "What makes you think that?". I could tell by her tone that she didn't believe me, and my face turned even redder, and my head went down. I explained that I could FEEL it and HEAR it. I was going to explain the sounds and stuff but she started telling me how the urinary tract was "a closed system". She went on to explain how we get air into our bowels by eating, drinking, even swallowing, but that can't happen in the urinary tract because there is no way to get air in there. 

I sat there deflated. I just didn't know what to say. You can't tell a doctor, "But I looked it up online." That wouldn't give my words any credibility. Then she stands up to leave telling me that they will print my referral when I checked out. My mind was racing and I managed to just say, "What about my uti?". I didn't look up at her when I asked but she stopped and said "Do you want a urinalysis?", like that was an option she didn't think was needed. I barely wispered yes and she said she'd have the nurse come in and left.

I was in shock. I couldn't believe it. What had just happened? Was I really losing my mind and imagining this air? Was I some type of hypochondriac that strangely didn't like going to the doctors? What was going on with me.

The nurse came in and gave me that god forsaken cup and I gave my sample and returned to my room to wait for the results. The antibiotics were going to fix this anyway I thought. Air or no air, the infection needed taken care of and that was going to feel great.

A couple of minutes later, the doctor pops her head in the door and says the test was negative and I was all set. Then she left. She just left.

I wanted to cry so bad. I didn't understand what had just happened. I went there for help and it was like she didn't believe a word I said. Why? What could I have done to make her think I would make this stuff up? What could I possibly be after? Antibiotics? I NEVER ONCE asked for anything for pain. What would the harm be in feeling like I needed antibiotics. Was there some shortage that I didn't know about? Covid was causing supply problems. Could that be it? Why did she just leave? There was no trouble shooting, no concern. I failed her test and that was all there was to it. To hell with my symptoms.

I wanted to run out of there so fast but I had to check out and hold it together until I could get to my car. I was hanging by a thread when my check-out person couldn't print my referral from their computer for some reason so I was told to go around to where I checked in and they would check me out there.

I go around to the front where the guy happily and rather loudly announces that he can print my colonoscopy referral for me and starts asking me all these questions. My mind is spinning so fast, replaying everything the doctor said, the fact I had no antibiotics,there would be no relief, the entire room waiting for their appointments knew I was going to have colonoscopy, I could barely think straight. I stumbled through his questions and he asked who I wanted to see and I didn't know anyone, I hadn't planned to do this, I'm like "just who ever can see me the fastest." And the guy is like, "You don't want to have this done do you? (he laughs), your just going to blow this off aren't you?" And I'm like, "No. No I want the appointment." In front of everyone. Like they already didn't know enough, they have to hear me say that I WANT to have it done. smh If I could have poofed into nothingness at that time I would have. I couldn't turn around and say, "Sorry folks. Pain makes you do some crazy stuff." And I think by then I was holding my breaths to keep from bursting into tears.

I finally get my paper, pay for the visit and bolt out the door. I didn't make it to my car before I exploded in tears. It was the worst office visit I have ever had in my life and I was just bursting with all this raw emotion I wasn't even sure if I should drive but I couldn't sit in that parking lot. Not there. Anywhere but there!

I cried all the way jp,e and came into the house to cry even harder with my husband, telling him everything that had happened. I spent the next 3 hours crying. I cried because I was mad. I cried because I still hurt. I cried because I didn't get the antibiotics I knew I needed. I cried because she didn't believe me. I cried because I felt like I shouldn't believe me either. My husband went around and around with me, doing his best to lift me back up and get my feet back under me but I just melted down. I did finally quit crying and we went to bed but I couldn't sleep. I got up and sat down on the computer and researched my urinary symptoms again. This time instead of looking up "uti with air" I just looked up "air coming out while urinating" and it brought up more information. It wasn't just a uti infection that could cause air, CANCER could cause it.

WTF?

FISTULAS (an abnormal connection between two  organs) can cause air depending on what organ connects to the bladder. People with Chrones, Inflamatory Bowel Disease, and Diverticulitis are prone to have this condition.

I have diverticulitis.

In the span of 20 minutes I found three different ways for air to get into the bladder and pass it while urinating. The thing she said wasn't possible was actually VERY possible and could be quite dangerous.

Over the next couple of weeks I replayed that visit over and over. Did she really not know about bladder cancer or fistulas. Or the fact that bladder irratation will cause uti symptoms without a typical bladder infection. She was aware of my diverticular issues because we had talked about them. Why wouldn't she see a connection? Why would she think that someone was making THAT up in the first place. She didn't try to even figure out another reason for my symptoms. She denied they were even possible so why should she, right? She didn't care that I said these things were happening. She had no desire to look for a rational reason for them, let alone do anything to fix them. Why kind of doctor is like that? I mean aren't doctors supposed to figure things out with you? Like you go in and say your back is hurting and you've been trying to fix it by doing   X,Y,Z and they say well you need to do X,Y,Z and when you say, Yeah, and it's not working............don't you move on to the next thing that could cause your back pain? Don't you sit there and go into more detail, delve a little deeper? Come up with the next thing to try? I mean, this woman just left me. Her test did nothing to take away my symptoms, I still had them, and she left. Do I only get one guess per visit or some stupid shit like that?

And think about the beginning of the appointment. The statement made on my weight. "I can only go by what's in here.", while she's looking at her computer screen. So, she's basically saying that all these changes that had happened over the year and a half with my weight between appointments didn't matter. The only thing that mattered was what the scale said when I was in her office at my last visit? That can't be right, can it? A doctor wouldn't really dismiss the changes that happened from one appointment to the next if the patient talked about a big swing in numbers in the middle of it all. Even if it wasn't documented at their office. Why would someone lie about that? I mean, how good of a doctor are you going to be if you don't listen and absorb what your patient has been going through and doing. How good are you going to be if all they are, are numbers on a screen.

Sure we've all heard of just being a number but this wasn't some large hospital or even a new doctor. I've seen her before. We've talked about adjustments to my thyroid medication. I've always been fine with the changes. I don't know why I suddenly felt like a bunch of numbers on a computer screen instead of her listening to my new complaints and taking me seriously. It was like I was some stranger to her and she didn't trust a word I said.

My hopes then turned to my colonoscopy, because she had been zero help. The anti-spaz meds did nothing for me when my stomach seemed to blow up like that and what good would it do to go back and say that it was still happening if she didn't believe me the first time or care to look into anything. My only hope now was a yucky procedure that I hoped would end the constant pain in my left side and I'd have to wait to get something stronger for my uti a while longer.

So how do you think the colonoscopy went?

 

See all blogs by Pixie
Comments:
Mar 07, 2022
Bill : Hello Pixie.
Thank you so much for your post which I read with avid interest. YES! I do think you have come to the right place to share this sort of experience. However, I also think that a copy of your post should be sent directly to the doctor concerned. It might make uncomfortable reading for her but if nobody informs her about the consequences of her behaviour she is likely to repeat this with other potential patients.
I have no idea how the colonoscopy might have gone, but I do hope you will tell us soon.
Best wishes
Bill
Mar 07, 2022
Abefroman1969 : Pixie,

This sounds like an awful traumatic experience. I too have had issues with doctors not listening to me, I fired three GI doctors and one surgeon and numerous nurses over the past couple years for this exact reason. If the doctor won't listen to the patient there can and will be zero trust for the patient.
BTW atta girl on your weight loss and the work it took to get there. I know it isn't easy.
I'm not at all comparing my situation to yours, I managed to lose 122 lbs WITHOUT trying and doctors and insurance kept saying I was fine or my treatment wasn't medically necessary.
I'm just gonna throw out a guess here and say that the colonoscopy found an extensive fistula system and early to moderate signs of dysplasia and that you were right all along.
I'll be following your blog and don't hesitate to reach out if you wanna trade doctor stories, I've got some doozies myself.
I really hope the best for you and I'm really glad you've found us in this group at meetanostomate.com.
I can't stand shitty doctors with shitty attitudes.
BTW I'm a 30plus year Crohn's sufferer with over 30 surgeries until @ the big one” in January of this year (2022) the doctors assured me that I would be in the hospital 3-5 days then home and I would thank them for the surgery I didn't want. I told the doctor he was absolutely wrong and that his recovery timeline was way off, he dismissed my concerns and again told ne how much better I would feel after the procedure. Well as I predicted I felt worse after the procedure and was in the hospital 3-5 WEEKS, after much bitching on my part I was finally released home after 25 days. Not because I was feeling better, but because my surgeon and GI doctor were both going on vacation! I basically had to get in home care 24th a day(I'm single) I flew a friend into town 3 times during my hospital visit, and told the doctors they were putting me in the poor house by taking their advice!
So sorry that turned into a rant about me.
Again I'll say I'm here if you ever need to vent or scream or tell dumb jokes, I hate hearing that what's happened to many of us continues to happen, these doctors MUST listen to their patients otherwise that whole “do no harm” bit is just lip service.
Abe
Aka
Paul
Mar 07, 2022
delgrl525 : Hi Pixie, You are definitely in the right place and I totally relate to sometimes needing to just vent! I also agree with Bill, that a copy of your post should be sent to that doctor. I do want to know how your colonoscopy went! Do keep us up on your progress, and I really hope things start getting better for you.

Terry
Mar 08, 2022
lovely : Sorry for all you have been through, hope you get some relief soon.