When a good doctor understands all your symptoms, along with your medical history, pieces it together – your life can change. I had such an experience when I was told my UTIs were not UTIs, they were in fact a sign that I had painful bladder syndrome. And here’s everything about it…
In the last 25 years, I have met more good doctors than bad ones. That’s also because I have made a conscious decision to not stick around with bad ones. If they don’t trust me and are dismissive then I know I need to keep searching.
Why am I sharing this..?
Well here’s why…
Actually before I continue, here’s a video version to my MCAS, PBS & UTI journey. If you wish to continue reading then just scroll through or you can watch here:
My UTI Story, No, My Painful Bladder Syndrome Story
It’s April 2019, I was going through the worst pain, burning and itching sensation around my vaginal area. Peeing hurt my abdomen too.
The doctors – including my most understanding and trusted gynaecologist said to me that as usual I just have a UTI. Something that’s happened many times before.
Mayo Clinic on UTIs…
“A urinary tract infection (UTI) is an infection in any part of your urinary system — your kidneys, ureters, bladder and urethra. Most infections involve the lower urinary tract — the bladder and the urethra.
Women are at greater risk of developing a UTI than are men. Infection limited to your bladder can be painful and annoying.”
The problem with me was, this UTI wasn’t going away with the usual medication and ointments. I got some temporary relief by pouring a mixture of very warm water with baking soda – there was a crazy initial burn from this, but that and the tears were all worth it giving me enough temporary relief so that I could get some sleep.
But I couldn’t do this everyday. Once or a maximum of twice a week was all that was allowed.
I re-visited my diet, tried to change things up after reading that mint tea can make things worse along with spicy food, caffeine and other citric fruits.
But even then, nothing changed for me.
I was still cringing and crying in pain every single minute for… drummm rollll…6 months!!
6 MONTHS!!!!!
I had applied the strongest ointments available and I was struggling. I felt I was in hell – well, if hell was a feeling, I was experiencing it.
It was now September 2019 and I was in New York – I had travelled from Mumbai to New York for my endometriosis excision surgery.
Relevant Read:
- How Much Does Laparoscopic Endometriosis Excision Surgery Cost?
- My Guide: How To Prepare For Endometriosis Laparoscopic Excision Surgery
- My Guide: What To Expect After Endometriosis Excision Surgery
I went through pre-surgery testing. It showed a UTI.
Post surgery I was prescribed an antibiotic for it too.
I took it.
And along with the surgery pains, having had a small rupture of the bladder during surgery (which was repaired) and having a foley catheter bag to pee in for 5 days, I was going through a different level of discomfort. But it seemed like things were calming down.
I thought, maybe it was endometriosis that was causing all this and I was freer from it now. But can life really be that simple…?!
I was back in Mumbai from my surgery and the UTI woke up again. Now I was determined that no matter how sore I am from my post surgery recovery, I will go see a specialist – a urologist.
Meeting a Urologist
Before meeting the urologist, I got my urine test done which showed I had a UTI so armed with this report and all my surgery notes, I went to meet this new doctor in the hope he’ll prescribe a magical medicine and I’ll be out of his office in no-time.
Again, it wasn’t going to be all so simple.
He heard me out and went through my reports in detail. And then said (I’m paraphrasing)…
“I strongly believe you do not have a UTI. You have Painful Bladder Syndrome.”
I said to him: “Whaaatt… but my reports say I do! Please doctor, don’t add another condition to my list, I’m already managing too many!”
Doctor: “with everything you have described and that you have endometriosis along with the other conditions, this doesn’t sound like a UTI. So, you’ll have to re-do this urine test, but do it properly because there is a way to do a urine test so that you do not get a false positive. And, you will also get an ultrasound done of your bladder.”
Me: “Another urine test? And an ultrasound? Please doctor, just prescribe me the medicine for now, I’m dying!”
Doctor: “I can prescribe it, but it’ll be a temporary solution and then you’ll be back here again.”
He had a point. And I agreed.
How Women Should Give a Urine Sample
So what is the “right way” for women to give a urine sample? According to my urologist, women should wash their genital area, dry it, part their labia and then mid-stream, collect the urine sample (in a container of course!).
Why so? Because it makes sure that there is no external contamination – even from the washing detergent on your underwear!
Back to the Urologist with My Reports
I forgot to explain, the ultrasound was done to determine how much liquid my bladder can hold and whether I am able to empty my bladder completely.
So my ultrasound was great despite the fact that I do feel a lot of pain in the bladder region before and during peeing.
Now for another drum roll moment… my urine report.
It showed no infection. No UTI. But I was still crying in pain.
My doctor was right.
He put me on one medication for PBS and now 7 months on as I write this post (July 2020), I haven’t had one moment where it feels like hell again.
This all happened because my doctor was a good one. He listened and didn’t take the easy and the more profitable route of prescribing me a medicine that wouldn’t work for me in the long-run and would see me coming back to him all too often.
What is Painful Bladder Syndrome (PBS) / Interstital Cystitis (IC)
Well, I thought I would write up all the details about this, but I’ll keep it simple and quote the Urology Care Foundation, because this information is easy to find, but it’s the discoveries I had after this diagnosis that I want to share more about, but here’s the quote first.
“Interstitial cystitis (IC)/bladder pain syndrome (BPS) is a chronic bladder health issue. It is a feeling of pain and pressure in the bladder area. Along with this pain are lower urinary tract symptoms which have lasted for more than 6 weeks, without having an infection or other clear causes.”
Why Do I Have Painful Bladder Syndrome / Interstital Cystitis
My doctor and I had a discussion on why I had PBS and why it went undetected all these years.
Well, I know why it went undetected – because as usual some doctors weren’t willing to look beyond the obvious and bring together all my symptoms.
As for why I had it? I did some research and I stumbled upon an article:
‘Clinical Manifestations of Mast Cell Activation Syndrome By Organ Systems’
It’s an absolutely brilliant, eye-opening resource – it answered so many questions that were left hanging for me.
This one article answered why I have itchy eyes, congestion in the sinuses, respiration issues (also because of POTS), palpitations (again, also because of POTS), acid reflux…
“…unusual frequency of urination, difficulty initiating urination, inability to fully empty the bladder, and painful urination (as if a urinary tract infection is present, except that testing can’t find clear evidence of infection). ”
“Endometriosis seems somewhat common, too.”
“excessive menstrual bleeding, weak bones”
and quite a list of other related stuff.
This one article got me excited and I asked my urologist if I had Mast Cell Activation Syndrome (MCAS), because it is linked with painful bladder syndrome and many of the other issues I was dealing with. Yes Ehlers-Danlos syndrome did overlap with my endometriosis and weak bones issues, but like I said, MCAS answered the remaining unanswered.
Relevant Read:
- My Experience: Connecting Endometriosis and Ehlers-Danlos Syndrome
- My Journey: Being Diagnosed with Ehlers-Danlos Syndrome
- My Experience: The Relation Between Endometriosis / EDS and Chronic Fatigue
He wasn’t too sure of this… and now began the journey of understanding if I had Mast Cell Activation Syndrome – boy these issues do seem to come in pairs. The last time I was diagnosed with a condition it was Ehlers-Danlos and POTS, and now it seemed that painful bladder syndrome brought the MCAS diagnosis with it.
I went to see my rheumatologist, who is also my primary (and most favourite) doctor in treating my EDS and POTS.
I told her my whole UTI-PBS-MCAS story (gosh so many abbreviations!).
On the face of it, she seemed to agree with the MCAS possibility, but took my medical file, prescribed me medicines for MCAS and asked me to see her after a week so that she could go through everything and get more opinions.
A week later, with the PBS and MCAS medicines having improved my existence, my rheumatologist told me that everything pointed to MCAS.
After this diagnosis in February 2020, March 2020 brought with it the Covid-19 lockdown. So I haven’t been able to go for a follow up, but so far the combination of antihistamine and PBS medicines came at the right time and has really helped me live better – it allows me to focus on my EDS, POTS, fibromyalgia and my endometriosis excision surgery recovery.
Currently I’m learning all I can from various articles and other people’s personal experiences.
And very importantly my inclination to creating an ever improving diet has led me to learn that a low-histamine diet is helpful for those with MCAS.
I get some amazing recipes from Claire, who follows a low-histamine diet herself while creating some really simple and flavourful options. Here’s the link.
The Point of This Post
Just to quickly recap, the point of this post is to share my new journey with MCAS and also explain how an unresolving UTI may not be a UTI.
Sometimes we need to dig deeper – the answers are all there.
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If you have any of the conditions I’ve spoken about it, or if you wish to share your thoughts on this post, then the comments section is all yours 🙂
If you’re a social media person, then you can follow me on Instagram, Twitter, Facebook, Pinterest or YouTube.
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Disclaimer: I am not a medical professional. I am a patient and have created this platform to share my experiences. This is all purely informative and in no way am I providing medical advice. Please consult a medical professional.
I’m glad you seem to be nearer finding the cause of your IC / PBS – these pesky mast cells! If you ever have a bladder biopsy again then you can ask them to ‘count’ how many mast cells they see for a clearer view of the issue in your bladder.
And thank you for sharing my low histamine recipes! So glad you like them and find them helpful 🙂
Thanks for sharing your knowledge. I don’t have PBS but I do get bladder and vulva irritation I think due to dryness from Sjögren’s Syndrome. And sometimes it can feel worse than physical pain where I need to pace up and down nonstop the whole night. It really is torturous.
Also, FM has a link with IC. Dr. Daniel Clauw says it’s the exact same form of pain. https://www.ourcpc.com/learning-exchange/interstitial-cystitis-and-fm-separate-but-overlapping/
Hi, thanks for sharing so much of your life with us. My wife was also diagnosed with endo and I’m my quest to finding answers , I chanced on your post. But prior to the diagnosis all the labs pointed to a UTI.
Thank you so much for sharing your story. I just came back from the doctor with a negative UTI test despite having the usual symptoms for several weeks (one failed antibiotic down). He suggested I follow-up with a urogynecologist, but I can’t help googling in the meantime and stumbled across a few overlaps with suggested treatment for my chronic hives which can be caused by MCAS. I’ve suspected EDS and MCAS since it’s in my family, and your article makes me feel more confident in seeking a rheumatologist. Back to the low-histamine diet, I guess! Have you found any supplements help, or mostly diet and medication for the PBS?
Hi Jess, I’m so glad your doctor is getting you to see a specialist – it’s so important to get a proper diagnosis. I don’t take any additional supplements other than the regular multi-vitamins, my MCAS and PBS meds. My diet had already been reworked because of my endometriosis, EDS and MCAS so thankfully I didn’t need to make any changes there.
I hope it all goes well for you. Good luck 🙂
My daughter has POTS and MCAS. We follow a mostly low histamine diet. Her PBS is out of control we have no one that knows what to prescribe for it. She can’t take Benadryl and stay awake so not an option for school/work. What did your Dr prescribe? Thank you
Hi Sue,
It’s so sad that your daughter has to go through all this. Unfortunately it won’t be very responsible of me to share what I’ve been prescribed (because I’m not a doctor, and we all have varying reactions to various medicines) but I would urge you to see a urologist – a specialist. That’s how I got my answers. I hope it works out well for your daughter. Good luck.
Can I know the name of the PBS med?Is it Pentosan polysulphate?
Hi Sneha,
I suffer from multiple comorbidities so my medication is adjusted accordingly, therefore I will not be able to share what medication I am on. If you would like to know the name of my doctor to get an online consultation with him (in case you’re not in Mumbai) then please email me on [email protected] and I will send you his details – this would be the best way for you to get a diagnosis and medication suited for you. I hope this helps.