Nowhere do they take these Seriously? I am angry

After years, I finally had one.

I’m finally going to post. It feels good to get this all down, especially near the holiday season. I’m a twenty-something-year-old female living in the South. Howdy to everyone near! Disclaimer: This is an apology for this novel. This is my Ureaplasma Test story, but also a successful one; I’ve read a ton over the years and continue to read them today. I want to say thanks to everyone for their suggestions.

I doubt I could’ve made it this far without the personal tips and other anecdotes posted here about Mycoplasma Testing after reading about OTC products such as antacids. Or indeed, Relief, antihistamines, marshmallows, aloe vera, sodium bicarbonate and other ways to alleviate symptoms of IC, life would’ve been miserable.

Sometimes, these methods don’t work for someone; other times, they do.

I’ve tried most products there for relief; the most basic ones have (thankfully) gotten me through. Although my story isn’t new or noteworthy, I began suffering from IC symptoms when I first started having sex (almost a decade ago). I can’t imagine having to take care of others or have a family with this Ureaplasma condition.

There are so many women on this Ureaplasma forum for tests. Who does this every day and more? I want to take the time to appreciate you all; you are some heroes. At the beginning of this journey, I suffered from Mycoplasma too: -burning starting with the first pee of the day (this eventually moved to urethral discomfort/burning most of the time) -burning after urination -occasional gross hematuria -painful sex -on and off bacterial vaginosis -frequency when at the ‘peak’ of a flare, accompanied by fever -UTI “without bacteria” (3 UTIs with E. coli out of many) –

Pelvic discomfort

Macrobid and other antibiotics relieved all symptoms greatly. But it would always come back -avoiding sex helped, but following the IC diet didn’t. I’ve been to four gynaecologists, two urologists, and one immunologist, and it seems this is pretty normal for even a few doctors. And I’ve had a gynaecologist get angry and blame me. I’ve had another gynaecologist tell me to take Azo until it resolves itself.

A cystoscopy and kidney ultrasound followed to confirm what the doctor believed. Nothing was notable in the Ureplasma Lab (no ulcers with mild urethral irritation), but I think it was easy at the time to diagnose me to make me feel better and less alone. After diagnosis, the urologist recommended a few methods: the IC diet (which hadn’t worked for me), prescriptions, and PF stretches and instils, which were heavily discussed in the forums.

I started taking a pill much like Azo, but it turns urine blue

I’m sure you all know what I’m talking about; it didn’t work for me); due to personal choice, I did not receive instils or try Elmiron as a last resort. A lot of patients have success, and a lot of patients do not. After my Mycoplasma diagnosis report and prescription, I started researching, and tests came across two bacteria: myco and ureaplasma.

Nowhere in town can I get checked for myco and urea, a common bacteria that lives (the vast, vast majority of the time) commensally in humans, exist? Certain practitioners will not take you seriously. Also, some patients with IC have been tested and treated for it and still suffer from IC. Its role in IC (if any) is inextricably complicated, as is its role in miscarriage and infertility.

However, these microbes are found in normal, healthy individuals who conceive and have no further complications. So, it is a mysterious individual, if anything. I had asked two doctors (my urologist and gynaecologist) to culture or, if they had one, perform an in-house PCR (polymerase chain reaction, very easy and common. I work in a genetic test lab, and they are performed all day) for mycoplasma and ureaplasma. Both of them said no; even if the test was positive (which is a 50-80% probability), the presence of these bacteria would not (or should not) present symptoms.

I did more research:

An infertility clinic was the only place in town to test the Mycoplasma Home Kit. Well, I’m here to tell everyone that. Do you know what? I lied. I went to the infertility clinic and told them that I was trying to conceive and having issues. Do I feel super guilty?

No. Last year, I miscarried.

Due to this loss, I felt almost robbed that no one had tested me for Ureaplasma. A) given my urethritis and other issues and B) spontaneous miscarriage. Although urea and myco aren’t well researched in a purely syndromic female context, they have been proven to be linked to (at the very least) miscarriage and infertility in women.

A quick search on PubMed yields many research studies proving this link. I had been very transparent about what had happened to me with all of my doctors. I had put it on my patient history, glaringly, hopefully as a horrible clue for them as to what was happening to my falling-apart body. Don’t get me wrong: a lot of doctors have helped me. My immunologist was God’s gift to this earth. I was pushing 9 years of suffering on and off with this condition to be diagnosed, and it only got worse and worse (I stopped having sex, and the burning had escalated to a 10/10 some days).

To be straightforward, I was miserable.

Salt baths stopped working, belief and Azo didn’t work, and pain pills only took the edge off. So, the infertility clinic was the only place in town to perform the Mycoplasma Swab. Due to the high antibiotic resistance in these bacteria, knowing which genus of bacteria you have is pretty necessary if you are positive. They ran the test (it came back positive), and I’m really happy to say that I’ve been IC-free now for six months.

I prayed to God that it would be positive, which is weird that you’d want an infection.”Unless you’re trying to conceive, you shouldn’t be tested for this, however symptomatic you have been for the past decade.” If so, that makes me sad. There are plenty of women and men who are suffering, and this test could potentially help. I’m sorry if this was too long of a novel. I wanted to share a success story in which my life isn’t over, although it felt like it.

I had to advocate for myself, even if it meant ‘cheating the system.’

Let me be very clear in stating that a large portion of IC sufferers are tested for this, treated, and still have IC. However, there are stories of some who have been treated and felt better. IC, as of right now, is mostly a life-long condition. I hope that others find relief as I have.

Over the years, it has been about doing anything to not focus on the pain. It meant missing out on many things, as all of you know. Regularly checking each week for Myco and Ureaplasma. It meant acting ‘weird’ or being antisocial/staying at home when you don’t want to. But as I type this, I feel no remnants of ever having searing pain like I used to. I wanted to let anyone who might be reading know that a day is coming when, once you find relief, it is possible to be complete. I was always afraid that IC’s feelings would be lurking in the shadows, even when I went into remission.

It doesn’t feel like any permanent damage is there (if that makes any sense).

I’ve read many wonderful messages from powerful people suffering from this condition and wanted to try to post my own. There is nothing that can bring you down! I mean it. After so many tough years, even if it comes back, I know everything will be okay because of how I feel today.