Misdiagnoses, Hormones, and LIFE

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Misdiagnoses, Hormones, and LIFE: my health journey through the past year and how I’m working on my wellness one day at a time

Misdiagnoses, Hormones, and LIFE: my health journey through the past year and how I'm working on my wellness - @TheFitCookie #fitfluential

Update 5/6/2019: after several years of trying different things for my bladder health, I found out that I had adenomyosis and ended up having a hysterectomy. In my case, my bladder/urethral pain was not due to interstitial cystitis at all, but was partially due to the adenomyosis. Certain foods can also cause recurrences of my bladder/urethral pain, but I am 90% pain free now!

Hey friends, how’s it going these days? It’s been a little while since I posted a health update. Things have been a little up and down with my health the past few months (mostly up lately though!) and I wanted to update a few things I’ve mentioned in some past posts.

Disclaimer: this post is for informational purposes only and is not intended to replace the advice of your medical professional.

A while ago I wrote a post all about my struggle with IC (interstitial cystitis). I had been diagnosed with IC a few years ago by my gynecologist without a scope being done, and it was something that I really struggled with. Living with pain that didn’t have an explanation or a cure was hard for me to wrap my head around.

Read up on the posts about my health journey (in order by date):

  1. Living with IC: Finding hope through the pain (December 2015)
  2. Interstitial Cystitis Resources and Helpful Tips (December 2015)
  3. Misdiagnoses, Hormone Imbalance, and Life (this post, February 2017)
  4. Hope for Healing: Health Update and IC Diet (July 2017)
  5. Mona Lisa and a New Diagnosis (January 2018)
  6. Adenomyosis and Surgeries (November 2018)

Misdiagnosis

I struggled with giving up my favorite foods like chocolate and coffee, and everything seemed to irritate my symptoms more and more. Things would seem to get better, then they would get worse. It wasn’t getting better!

Fast forward a couple of months to today. I don’t have symptoms and I can have some of those foods that were off limits before (mostly: chocolate still makes my skin break out bad). But my bladder symptoms are mostly gone.

What happened?

I found out that I was misdiagnosed with IC by my gynecologist.

Last year my symptoms continued to get worse and worse, and new symptoms added to it. Bladder pain was more frequent, but then I started having pelvic floor pain and pain during intimacy. TMI perhaps, but this one is important for women to know!

Urine cultures kept coming back negative, so there was no infection (same story for the past several years!), and my doc thought that my pelvic pain was due to pelvic floor muscle problems. I went to see a pelvic floor physical therapist for several months. My PT was awesome and introduced me to cupping for my leg muscles, but my pelvic floor pain was still there.

What’s going on?

I finally decided to go see a urologist, something that I had put off for a long time. I was worried that a bladder scope would cause a flare up and pain, so I avoided seeing a urologist for several years. But with my pain getting worse, I figured what do I have to lose – I needed to see a specialist. My apprehension about pain wouldn’t keep me from getting answers this time.

As uncomfortable as it was, I went through the bladder scope and found out that I in fact did not have interstitial cystitis. I had trigonitis, an inflammation of the trigone area of the bladder. The urologist said that trigonoitis is very common in women. Even though the skin cells are changing in that area, it isn’t pre-cancerous at that stage and usually indicates irritation of some kind.

Even though nothing came back on cultures, we tried antibiotics with a moderate chance that they would help. And surprisingly it did help. I don’t believe that people should be taking antibiotics for not reason, but at this point I was willing to try anything to see what could help. After taking the antibiotics, my pain began to subside. But I just wasn’t sure what caused the pain to begin with…

Hormones

That was only one piece of the puzzle, though. I was worried that any relief from the antibiotics would be temporary, so I did some research and found out that the cells in the trigone area can be sensitive to hormone changes. Interesting.

I also began to notice that I only had bladder and pelvic floor pain during certain times of the month, but not other times. I started to connect the dots and began to see that my symptoms were hormone related, and upon further studying, probably from low estrogen.

Back when I first started my pelvic floor physical therapy, I had my hormones checked at the suggestion of my PT, but the doctor said everything was normal. But I knew something was off with my hormones. Over the previous year, I started losing more of my hair, and my once very thick and wavy hair was getting straight and thin. I was getting really deep wrinkles in my forehead, nothing like I had ever had before, and my skin was chronically dry. Ugh.

I went to see the gynecologist again, but I saw a different doctor since my regular one couldn’t see me soon enough. The new doctor gave me some Estrace cream to try out and see if it helped.

Huge difference!! It was like night and day after only taking it for a couple days. My dry skin improved and my pelvic floor pain went away.

But, I ended up getting very bloated, gassy, and gained 2-3 pounds of water weight almost overnight.

As much as I tried and tried, I couldn’t make the Estrace cream work for me even just taking the smallest dose. It worked great, but I couldn’t handle the side effects.

It’s all one big health experiment some days!

For the last month, I’ve been on a mission: find a natural estrogen that wouldn’t cause those awful side effects but still helps my symptoms. I’ve been using some natural phytoestrogen cream that is soy-free (a big one since I have soy allergies), NeuEve periodically (which helps some, but has no estrogen). I used some of these, but ended up with the same symptoms as the Estrace cream. I will start using coconut oil when the NeuEve runs out since it is pretty expensive.

So far the phytoestrogen skin cream and the progesterone skin cream together has been working well. I still have a few symptoms, but not as bad as they used to be. Things are improving!

Now that I know what’s been causing all the pain and bladder issues recently and over the past few years, I can find things that work. I’ve also started taking some evening primrose oil daily and very small doses (like 5 mg) of DHEA daily as well. I’ve gained a few pounds over the last month from the ups and downs with the estrogen, lagging energy levels, and an increased appetite (thanks, estrogen), so I’m working on losing some weight and bringing my body fat back down to where it used to be.

I’m only 32, so it’s weird that my estrogen would be low enough to cause all those problems, but my body has a mind of it’s own I guess ๐Ÿ˜‰ I usually don’t share this sort of thing with people outside of close friends and family, but I realized that if this can help someone, then being transparent with my health struggles is worth it to me! 

Disclaimer: this post is for informational purposes only and is not intended to replace medical advice from a qualified healthcare provider. Always use common sense and seek medical attention when needed

14 thoughts on “Misdiagnoses, Hormones, and LIFE”

  1. Hi Sarah,
    I’m so glad I found this post. I am beginning to think my hormones are contributing to my IC. The only time I have relief from my IC symptoms is when I am on my period. What type of hormone testing did you have done? Is there a certain type during your cycle that is best for hormone testing? So glad you were able to figure out your issues and that you are doing well now!

    Reply
    • Hi Brandy! I had some hormone testing with my gynecologist and our yearly wellness blood draws, but nothing showed up as being too low or too high. I ended up being diagnosed with adenomyosis a while after I wrote this post and that was causing most of my problems. I ended up getting a hysterectomy that helped quite a bit. I still have bladder problems but I feel like it’s more urethral syndrome or something, and certain foods really trigger it (like too much chocolate or spicy foods).

      I’d visit with your gynecologist and see what types of tests they can do. The hormone tests depend on where you’re at in your cycle, so they’ll be able to tell you the best tests and times for your tests. I hope everything goes well for you! I’m still on the lookout for a different urologist that can help me, some of the ones I’ve been to don’t keep up on recent research and I don’t feel like they’re able to help me ๐Ÿ™ I’ll have to keep looking for a urologist, I’ll likely have to travel out of state.

      Reply
  2. Hey! I’m also struggling with trigonitis, I’ve tried all kinds of antibiotics that didn’t work. I was wondering what antibiotics did you take and for how long?

    Reply
    • Hi Anna! I can’t remember which antibiotics I took (it started with a “c”, maybe cipro? I started losing my sense of taste with it…), but I only took them for a few weeks at a time. I found out after this post was written that I had adenomyosis, and I ended up getting a hysterectomy due to the pain I was experiencing. It’s been 1 year since my hysterectomy, and my bladder symptoms are about 90% gone. I still have some urethral pain at times, but I think I might have urethral syndrome. But it’s much better now! I think it was being caused by my adenomyosis. I hope you can find some relief! It’s not fun being in pain a lot.

      Reply
  3. Sarah, I am so sorry that you have been struggling. The problem is, that just like in any other profession, doctors do their best but sometimes the body wants to play games! I’m glad that you are getting some relief, though. I hope they figure out what is gong on with you for good and nip it in the bud!

    Reply
    • I’m bummed I got misdaignosed several years ago, but I still love my doctor. She’s a great gal and works hard to help her patients. We can’t get it all right 100% of the time LOL ๐Ÿ™‚

      Reply
  4. Oh wow..that is a lot to deal with .. So sorry to hear about your health issues Sarah. Glad to hear things are getting better. It one thing to be diagnosed but being misdiagnosed can be a huge problem some times especially when you take wrong medication.. Thank you so much for sharing. I’ve been avoiding a trip to the urologist for a while now.. need to reconsider. Feel better – Hugs –

    Reply
    • Thanks so much Veena! I’ve decided that if I feel like something is wrong, that I need to take care of it sooner rather than later. Being misdiagnosed was a bummer, but at least the medication they prescribed didn’t have any bad side effects for me.

      Reply
  5. Thank you for opening up and sharing these problems with your readers! It’s definitely not always easy to be this transparent, but hopefully it’ll help someone in a similar boat. I hope you discover some new treatments that work for you.

    Reply
    • I definitely hope some ladies will be able to get some help reading this – those hormone issues can be tough! Several of my friends are in the same boat right now and we can talk to each other about it, which helps a ton.

      Reply
    • Thanks Sandra! I’m still working through finding natural ways to address this stuff. Some of it works and some doesn’t! It’s all one big science experiment sometimes – good thing I love science haha!

      Reply

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