Misdiagnoses, Hormones, and LIFE: my health journey through the past year and how I’m working on my wellness one day at a time
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.
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):
- Living with IC: Finding hope through the pain (December 2015)
- Interstitial Cystitis Resources and Helpful Tips (December 2015)
- Misdiagnoses, Hormone Imbalance, and Life (this post, February 2017)
- Hope for Healing: Health Update and IC Diet (July 2017)
- Mona Lisa and a New Diagnosis (January 2018)
- Adenomyosis and Surgeries (November 2018)
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.
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…
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 😉 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
Sarah Jane Parker is the founder, recipe creator, and photographer behind The Fit Cookie. She’s a food allergy mom and healthy living blogger based in Wyoming. Sarah is also an ACSM Certified Personal Trainer, ACE Certified Health Coach, Revolution Running certified running coach, and an ACE Certified Fitness Nutrition Specialist