My MCAS Journey: "It's Not a UTI, It's Painful Bladder Syndrome" [CC]
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- Опубліковано 9 лис 2020
- 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...
Please remember that I am not a medical professional. I am a patient and I use this space to share my experiences. Everything I speak of is purely informative and in no way am I providing medical advice, so please consult a medical professional for your needs.
Time Stamp:
My MCAS Journey: "It's Not a UTI, It's Painful Bladder Syndrome"
00:42 - Disclaimer
00:59 - UTI - What it is and Background to my story
04:04 - Conversation with my urologist
07:13 - What is Painful Bladder Syndrome (PBS) / Interstitial Cystitis (IC)?
07:59 - Why Do I Have Painful Bladder Syndrome? & More on Mast Cell Activation Syndrome
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Original article to this video:
My MCAS Journey: "It's Not a UTI, It's Painful Bladder Syndrome":
allthingsendometriosis.com/mc...
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Follow me on Social Media (and check out my website & podcast too!):
Website: allthingsendometriosis.com/
Instagram: / footprintsnoboundaries
Pinterest: / itstarot
Facebook Page: / footprintsnoboundaries
Podcast: open.spotify.com/show/2l9oX7A...
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Website Reference:
How to Prepare for Endometriosis Excision Surgery (LAPEX | Laparoscopy)
Blog: allthingsendometriosis.com/pr...
Video: • How to Prepare for End...
What to Expect After Endometriosis Excision Surgery (LAPEX) [CC]
Blog: allthingsendometriosis.com/my...
Video: • What to Expect After E...
My Diet for Endometriosis & Ehlers-Danlos Syndrome
allthingsendometriosis.com/my...
Video: • My 6 Diet Changes for ...
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External Website References:
Mayo Clinic on UTIs:
www.mayoclinic.org/diseases-c...
Urology Care Foundation:
www.urologyhealth.org/urologi...
Clinical Manifestations of Mast Cell Activation Syndrome by Organ Systems:
www.drtaniadempsey.com/post/c...
Low-Histamine Recipes from Claire of Through the Fibro Fog:
www.throughthefibrofog.com/lo...
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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.
#UTI #PainfulBladderSyndrome #MCAS #MastCellActivationSyndrome #LowHistamineDiet #InterstitialCystitis #BladderPain #endometriosis #UrinaryTractInfection #ChronicPain #WhyDoesPeeingHurt #WhyDoesMyBladderHurt #PainfulPeeing
![6 Things I Didn't Know About Hypermobile Ehlers-Danlos Syndrome [CC]](http://i.ytimg.com/vi/TZIHvWsK8Ys/mqdefault.jpg)
Thank you for making this video. This was extremely helpful. I was diagnosed yesterday with Painful bladder syndrome and this was the first time that I heard of this. I've been in pain for months and now on the journey of finding medication that can help with the pain. Unfortunately I'm super sensitive to meds so this is not going to be an easy journey for me. I am definately going to ask my doctor about MCAS and will look into that as well as the low-histamine diet. Much appreciate you sharing all this information.
Hi Elmari,
I really hope you do find the right combination of medicines and also get to know if you have MCAS because that may answer your sensitivity to medication issues. Good luck with it all and yes the low histamine diet has been really helpful for me.
Several years ago, my Mother
suffered for 18 months with bladder pain, burning, and repeated UTI diagnoses. She endured many rounds of antibiotics and then the DMSO treatments for six months, through the Urologist. Nothing seemed to help. I was beside myself, seeing her suffer.
I decided I would research until I found some hope.
This may not work for everyone, but afterward, she was comfortable and out of bladder pain until she passed away.
While she was in the hospital for heart issues, I happened to run into the urologist. He inquired as to why he had not seen us for over a year. I told him she was no longer suffering the bladder issues. He then asked how that could be. When I told him, he replied, " if rubbing your belly and patting your head works, so be it."
That flew all over me, and after some choice words, I suggested that he ought to do some research every now and then, as I had.
So, I found that the consumption of chicken can set up Ecoli in women's bladders. It is the processing of chicken that causes the bacterial issue, not the actual chicken. Removing it from her diet for a month, broke the cycle of Ecoli, and she had her first relief from the pain and burning that had plagued her for all that time. She was able to resume eating it, after that, but cut the frequency.
It may sound odd, but that is how it happened. Hopefully, this information helps someone.
We were grateful.
Which process of the chicken do you mean?
You are so articulate on this matter, express well, and are easy to listen to.
Thank you for this video.
Thank you so much Tammy. So kind of you to drop in a message like this. It's very encouraging. :)
Thank you so much for all the information! I am in tears with joy ,now I can start my investigation on my own health issues.
Yes yes yes Kim! You CAN start investigating your health issues! I have found such mental and physical stability when I started learning about my health. And it's also meant that I've managed to filter out doctors who are not helpful and now have a team of people I can turn to whenever I have a health issue. Sadly but rightly, we need to advocate for ourselves. Good luck with your investigations and your health :)
My daughter is on this journey with a lot of the same symptoms as you. I was just recently diagnosed with mcas and my rheumatologist thinks there is a good chance that my daughter does have this as well. Thank you very much for sharing this! I am hopeful that my daughter will find relief like you did!!
I have been dealing with this for a month. I am so glad I found your UA-cam thank you so much
I'm so glad it's been helpful to you :)
This was so incredibly helpful. After hearing your story, I thought, ‘gosh I can relate in so many ways.’ And as a woman with a history of autoimmune disease, this makes perfect sense. I will continue to educate myself and follow your videos. Thanks!
So happy to have found your channel! Great job on these videos, you are so eloquent & educated! Lots of love from Sweden 💕
Thank you Alice! I really appreciate you taking the time to drop in such an encouraging comment. :)
Thank you this is extremely helpful you are beautiful and so professional your videos are excellent!!! It’s like you took a course and got an A+ on how to present and give great videos
Thank you so much!
Thank you that helped me soooo much!!! I think I might have had this for 1 year now...
Hi Chiara... I'm really glad this has helped and you get the diagnosis and help you need. Good luck with it all and I hope you feel better soon. :)
Thank you!
I was diagnosed with IC years ago and it is most of the time under control but i have also had a whole bunch of random things . I got fed up with my primary care doctor and walked myself into an immunologist/allergist .. still doing tests but I will make sure mast cell is in there.
Thank you so much
O' yes, the MCAS and PBS diagnosis and then being given the medication for it has really improved my quality of life. I hope you get the right diagnosis too and get to feel better soon. Take care :)
I am an integrative nutrition health counselor, I have had IC for two years now and control it through diet. (No symptoms) I also have rheumatoid arthritis (no symptoms) IC is an autoimmune disease and you need to address the autoimmune aspect of it - that is your intestinal tract health and finding what your food sensitivities are. Please do a blood test by ALCAT (the best one) and find out which foods you are sensitive to. It could be something healthy like white potato.
Hi, thank you so much for this information. I will speak to my doctor about it.
Omg this is my story too. Thank you so much for putting this information out there. Most general doctors don’t know about this. I was put on antibiotics for years with no infection evident.
Thank you so much for this video!
I learned so much... I thought I am alone and everybody around me don't understand what I'm going through .. i had gone through all the symptoms and negative infection for urine tests... Thank God for HIS guidance I found your video ..
Wow! I have MCAS , EDS, POTS , ENDO and Gilbert’s Syndrome too 😅❤️ I had 3 years of horrific UTIS and after a bladder installations and biopsy’s it’s been so much better. I highly recommend D-manose x thank you for sharing xx
Thank you for sharing about bladder installations - I do know some people that it's helped. I'm glad it's helped you.
Does d mannose have side effects of nausea and diarrhoea
What is a bladder installation?
it helps to know I am not the only one as many of my doctors were dismissive. Not believing me
You are not alone...
It's amazing how many times it feels like I'm presenting a case, just as an advocate would do in court - whereas it shouldn't be like that for us. But thankfully there are some good doctors out there - but they can be tough to find so it can take a while.
You have extremely great presentation style and most pleasant voice ❤ I could be listening you for hours! Are you working in that industry already?
I was diagnosed with this terrible condition back in 2016 but took forever to figure out. Let me tell u my quality of life has declined so much. I haven't been able to work or practically do anything. I've been dependent on pain meds and that in itself is a huge problem. Now I'm looking into switching to an alkaline diet. Lots of ppl that have tried it have had success. I've been fasting now for about 3 days and the fasting itself has given me a bit of relief. I can feel the difference. While there's no cure for this, one can only manage it. Stress plays a HUGE factor and i have an incredibly stressful life and like I mentioned my pain is always unbearable and I've just about hit my breaking point. I'm doing as much research as possible so that I can tackle this evil ridden condition.
Hi Jessi,
Thank you for sharing your story. I've never heard of an alkaline diet - are you getting the help of a nutritionist for this? It would be great if you could share your journey with this new diet.
I completely know what you mean when it comes to stress and I've been making a very conscious effort to keep it under control and yes that does really help.
Good luck with the new diet - I hope you feel better.
I have POTS, MCAS and a history of Kidney stones; so when I started feeling like I nearly always had a UTI I figured kidney stones. After several ER visits and multiple antibiotics with no relief I finally found doctors saying MCAS causes this. I just wish my Immunologist would acknowledge it.
I am so glad you did finally find doctors saying it's MCAS - I also hope the medication is helping you?
@@FootprintsNoBoundariesByShruti thank you love! Amazingly benadryl seems to be my go to when I need to take the edge off of both POTs and MCAS symptoms. I don't tolerate many medications well and those that do help make me feel very lethargic and incoherent which isn't exactly helpful when you work full time. I am just thankful to know what and why at this point. My symptoms started in highschool and doctors didn't take me seriously until I was 33.
I believe i am starting this journey of painful bladder...i had my first ultrasound monday and have already mentally noticed coffee or acid irritates the bladder. Thank you for the video.
Hi Robin, I hope your ultrasound gave your doctors conclusive insight. I hope the results help you with your treatment ahead. I've heard many getting troubled by coffee - I too feel acidic from it, but more in the chest but I rarely have coffee. I find tea easier and lighter for me.
Thank you for watching :)
What Ur ultrasound shows in Ur bladder? What's the result..can u plss reply
your channel is so relatable! it’s scary how all these symptoms happens together to the same people! have they suspected that you might have Multiple Sclerosis throughout your diagnosis journey? they threw so many diagnoses at me (PPPS, migraines, fibromyalgia, endometriosis etc.) but the scariest of them all is MS which is not yet confirmed
Gosh that all does sound like too much and too scary - and yep, so many conditions follow each other and then we find ourselves working on managing it all - juggling multiple balls together.
I haven't been suspected of MS - I have had brain MRIs and nothing of that sort was mentioned to me. Thankfully.
I hope it's not MS for you. Fingers crossed and good luck.
Thank you for taking the time out to drop in a comment and share part of your experience. :)
This is no joke 😭 so much pain
Yesssss - I had unrelenting pain for for 10 months - I couldn't find a comfortable position to sit in at all. I hope you're getting the treatment you need to help you with it.
Thank you for your video. Very explicative on your story. My situation is exactly the same, without endometriosis and fibromialgia, but together with the bladder (it all started 7 years ago) I have blurred vision.
Is there any blood teste that could indicate the MCAS syndrome?
Also do you mind to share the last medication your reumatologist put you on?
I'm asking because I followed anything relatable to IC and EmbeddedUTI but nothing worked.
I been dealing with this for almost three years and lately it's been getting worst. Today is one of those days I can't get up from bed I'm in so much pain the pain meds the heating pad is not working I can't sleep I can't work I can't shower I can't be a wife I feel useless and like I have no life and I'm dragging my husband down with me. I want to wake up one day and not be in pain. Women deal with so much and suffer so much to add this on top of everything else and God is no where to be found. I'm losing hope I'm losing myself. 🙏😭😢
Hi Jenny, It's so sad that you're having to go through so much. Have you not be able to find a urologist? Or a doctor who can help you understand if you have MCAS?
I feel the same way, I think I have this. I go to my obgyn soon.
@@keller1838 I'm so sorry 😞 😔 I can't imagine the amount of pain you're in. I had to see three different urologist before I got diagnosed. Maybe your OBGYN can diagnosed you but from what I learned so far is a urologist who can only know what to look for. Make sure you fight for what you need. If the urologist you get doesn't care find another one because a lot of them are like it is what it is and there is no cure you just have to suck it up. Make sure you ask the urologist if they can also manage your pain or if they can refer you to a pain management doctor. What worked for me was some injections I would get that would numb me from the bellybutton down. Also make sure they give you a list of the foods that can trigger the bladder pain. For example my bladder gets irrated by high levels of stress, if I'm upset or angry 😩, sweet wine (it's been three years since I haven't been able to drink), tomatoes like on pizza, and the Uribel meds will also give me a lot of cramping so I have to switch it up with the AZO over the counter. I hope this is helpful I will keep you in my prayers 🙏 ❤️
@@FootprintsNoBoundariesByShruti what is MCAS?
It's Mast Cell Activation Syndrome - I speak about it in this video that you've left a comment on.
Here's a blog post version of this video for you to go through:
allthingsendometriosis.com/mcas-not-a-uti-painful-bladder-syndrome/
Totally right. I have all if those things you do. Also my kidneys are now damaged because they think of infections.
I was getting nowhere with my gp at the time, so decided to try an antihistamine. Lo and behold it has taken all pain away.
This condition MCAS has really torn my life apart.
In my 20's the incredible pain and bleeding with endometriosis and adenomyosis, followed at 28 years by hysterectomy.
And probably worst of all a debilitating depression and fatigue which are both gone now with just antihistamine 180mg fenofexadine.
Hi did you have pain and burning as part of your symptoms.
Thanking u bubbling beautiful young lady. I am in painful bladder syndrome 😫and I was told I have ic. I suffered for 3 yrs, many frustrating er visit. This disease bring anxiety and depression as well. Still suffering sometimes mild. Prisoner in ur own house, relationship problems. Anti-social and I am trying all remedies. Please help!
Thank you so much for your kind words. I really wish I had a resolution to this. As explained in the video, my medication has helped me. I hope you're able to see a specialist that understands?
Hello sister, Use Dr Omo herbal cream and herbs to get rid of UTl naturally no side effects
@@juliangracia6068 hi,, what's the name of the cream and meds please
@@yolandecloete2186 reach Dr Omo via mail/ WhatsApp
@@yolandecloete2186 + 2 3 4 9 0 3 3 5 0 5 2 6 0
What medication did he give you? Thanks so much for the video was all the things I’m dealing with
Hi po maam..good day...i am one of this condintion that i encountered after my TABHSO bcoz of severe endotmetriosis..I got UTI from the operation..my Uti Is often present even i went to many doctors..i was operated to 2006...until now i suffered pain...but i found a doctor in you tube and i try antihistamine, it helps me manage my pain...thanks for sharing your journey about this sickness..❤
What medications are you are on?
I recently got prescribed 4 lots of antibiotics and still has no change for a month. So I went to the emergency department because of pain and I was peeing blood. Then I was told I had bps. It makes so much sense.
O' yes PBS really ticks a lot of boxes and makes so much sense. I hope you're now on the right medication and are feeling better now?
I’m so sorry precious you’re going through this God hears your prayers and every tear you shared please don’t lose hope it’s a matter of getting to the right doctor for an official accurate diagnosis and mostly getting a treatment plan and don’t be afraid of taking the medication often times we suffer for nothing that’s why God gave us medication I am praying for everyone here in the comment section God designed us to need each other let’s give each other support do as many things as you can to make yourself happy I use social media as a positive outlet and to help other people I dance a lot exercise that relieves pain there are many things that you can do to get through this and actually thrive and not just survive
How do manage it so far?
Look into Mast Cell dysregulation (could be due to a suppressed immune system that is overreactive). This may play into the issue with the IC pain. Check out Mast Cell 360. Antihistamine and many other things like quercetin, luteolin, bromelain and many other things may help. Also, Anti-inflammatories, could be considered. Things like Boswellia Serata, SPM (pro resolving mediators), Black Cumin seed oil.
I have been diagnosed with IC with hematuria last year after 8 months of UTI’s (some with positive cultures some without) and antibiotics not working to resolve the symptoms. They diagnosed it with a cystoscopy. I’ve been doing a deep dive into my health issues and have 3 doctors suspecting hEDS (but unwilling to diagnose without a geneticist which there are none that see adults in my city) and I have had anaphylaxis and random allergic reactions for a large portion of my life. I saw an allergist who did a blood allergy test and tested for MCAS but the MCAS came back negative, and the allergy test came back with minimal allergens even though I have had severe allergic reactions before. They prescribed me an epipen and sent me on my way. I am struggling to find a solution for my IC and dealing with pain daily and I thought MCAS was potentially a source. Do you have any insight into an MCAS diagnosis even with negative blood results? I feel at a loss.
Hi Katerina, It can be so frustrating when doctors and testing of blood results don't help you with a diagnosis. I obviously cannot give any medical advice, but I can share what I experienced.
1. I was never tested by a geneticist for hEDS because the hypermobile doesn't yet have a known genetic marker to conclusively rule in favour of or rule out hEDS. So I'm a bit surprised that the doctors need genetic testing to diagnose hEDS for you. I have met doctors in Mumbai and in London and both confirmed by hEDS without genetic testing.
2. I was never asked to carry out any blood tests for MCAS. Instead, my history with hEDS, having endometriosis and IC/Painful Bladder Syndrome, urticaria and along with my reaction to various foods and dust - it was believed I have MCAS. After which I was put on medication for it to see how my body feels and yes, being on controlled medication for MCAS has made a huge huge difference to me.
I have found that my doctors have taken a practical approach and used common sense. They've been mindful of my medical history as well which has been extremely helpful in giving me timely treatment of my IC/PBS and MCAS.
I hope this helps and please feel free to ask anything you wish to. I'll do my best to help.
Good luck :)
Hi what medication did your doctor give you for IC?
I hope you are doing well, i have been diagnosed with pbs recently, dying in pain dont know how to deal with it. Were you put into some diet.please share....
Hi Riya, for me it was first important to understand what was causing my PBS. For me, it was having MCAS so despite being on diet that helps me deal with my EDS and endometriosis, it doesn't help my MCAS which is causing my PBS. So now other than being on medication, I have been working on a low-histamine diet which has helped me a lot. If you wish to know which low histamine recipes I follow, I'll link them here: www.throughthefibrofog.com/low-histamine-recipes/
good luck :)
I had my first at age 78.
I had flank pain in my leg. Has anyone else had that ?
Is there anyway to undo mast cell activation? What was the medication you were prescribed?
Hi I am wondering if you had the endometriosis on your bladder?
I had a full hysterectomy 12 years back and had the endometriosis on my bladder, that I had several operations to remove it including laser treatment to remove it, now.I am experiencing sharp pains in my mid lower abdomen, in the bladder area, and groin pain, as well.as.other symptoms.
It's a nightmare with docs.who.just.want to address one area.one symptom, when I think.they are all connected.
Most docs don't listen.
Could you recommend which urologist you visited? I am having urges to constantly pee all the time since over a month. While i dont have pelvic pain, but i do experience a burning sensation while I urinate. I too stay in Mumbai, and am looking for a good doctor to diagnose why this is happening.
Did you do any Cystoscopy?
Can you tell the doctor name who you visited in mumbai please
I m suffering from pain from 9 months
No temperature, bit painfull urination , not able to empty
And pain is hell
That's so horrible Shaherbano. I really hope you're able to see a urologist for this?
I got it too but i don't know what caused it but power of prayer
What medications? Because some of them have bad side effects that can affect the eyes
Anybody here tried Acupuncture? I had it on the NHS at my local Hospital, it works, but I had to stop as I have Peripheral Neuropathy,in my Legs and Feet, and the Acupuncture because its done in the Ankle can make it worse..
I feel u
What was the medicine he put you on?
It would have been helpful if you mentioned the name of the PBS medication that helped you to feel better. Seems like you left out a big piece of information that may have helped people be able to speak with their doctor about that particular medication
Hi Peggy, Thank you for dropping in comment. Just as I have replied to many, I have consciously made a choice that I will not be sharing medication names because...
I have multiple medical conditions and my medication combination keeps all that in mind, plus we all have different comorbidities and since I am not a qualified practitioner, it doesn't seem responsible of me to share - even more so because of where I am based and in some other countries like mine, people can get medication just over the counter.
Whereas, I feel, self-medication isn't the way to go in this case.
The idea of my channel is to share my experiences and encourage other patients to look into other reasons / directions / causes of their symptoms and discuss maybe what they see here with their doctors in the hope it'll help them. But sharing names of medicines isn't a responsibility I feel right to take on.
Hope this explanation helps you to see where I am coming from.
Hi ...i am suffering form this since last 5 years and i don't know how long it will go ...how to get red of it how to manage it and i always have one question and i couldn't found answer...and i am seeking this answer from you...if you can answer me out of your research on interstitial cystitis ( IC) What cause this disease?
Thank you so much! This video was so helpful! I was diagnosed with IC about 14 years ago. I’ve have chronic UTI’s since I was about 14. Now at 42 I’m miserable. I am changing my diet slowly and my urologist has tried a couple of different meds but when I get a flare up it seems like it’s lasts forever. My bladder feels like it’s on fire. It hurts to pee. It hurts right before. It burns. Sometimes I test positive and sometimes I don’t.
I was wondering what medication did they end up giving you to help you for 10 months ? I’m on hiprex now. It’s ok. It keeps me from getting a UTI. Barely. But I can’t seem to figure out the triggers for the flare ups or how to shorten their life span.
Any information would be great. 🙂
Hi Yamirka,
I'm so sorry that you still suffer sooo much after your diagnosis. My medication is a combination of IC medication and anti-histamines for my MCAS. I feel that combination works well for me because it's believed that my IC is happening because of my MCAS.
Unfortunately, just to be responsible - I prefer not to share the medication I am on as I'm not a doctor and I have a lot of medical conditions with various medicines so it's best I don't share as it could cause confusion and may not work as well for others.
Also, if you do have MCAS, then see if a low-histamine diet helps you. A friend of mine has created some very simple and helpful recipes that I follow. Here's the link: www.throughthefibrofog.com/low-histamine-recipes/
I hope this helps - somewhat.
Coconut water, alkaline supplement, homeopathy. No spice, no coffee, no tea, no alcohol,
I use Zyrtec. It's an Antihistamine. 1 pill at night. Helps with IC
Do you please mind sharing what medication the doctor prescribed for you?
Hi.. thank you for your kind messages. I don't wish to share the name of the medicine as I'm not comfortable in people believing that it may be the right medicine for them. I really want to encourage people to push their doctors to help them with the right combination of medicines.
May I ask as to what medication your doctor prescribed to ease the pain you feel in your bladder that you've been suffering for years ma'am..?
Hi Teresita, as a rule, I won't be able to share my exact medication with you - because my medication takes into account all the other conditions I have. I can share that I take a medicine that helps with an over-active bladder and medicines that help my MCAS.
You'll need to know if you have MCAS as well and see if treating that helps your PBS symptoms.
I think main role is in your healing journet of rheumatology
Hi what medication you taking for painful bladder syndrome..also may I know if you facing any side effects out of it
Hi Richa, I face multiple medical conditions so my medication for PBS is keeping all those in mind therefore it won't be appropriate of me to mention the medication I am on. It's always best your specialist urologist shares what medication is appropriate for you.
I am having uti and yeast infection symptoms and I don’t have either. I have pots and an a covid long hauler. I am fairly sure I have mcas
Hi... I'm so sorry to hear that. Have you spoken to a urologist or another doctor about the possibility of MCAS?
Hey, just seen this video! I'm in the same situation and I really think I have interstitial cystitis, but haven t found a good doctor, they are dismissive and all they want to do is a cystoscopy, which I m 100% it's going to give me horrible side affects. How did they diagnose you? Thank you
I know exactly how you feel. I'm going through the same thing. Been this problem off and on since 2017. No definite diagnosis. One doctor who was a fill-in for my regular Dr back then told me it sounded like I have IC. I've moved to a different state and going through all symptoms: Frequent urination, peeing blood, burning sensation lasting over one week. Happened twice this year. I'm currently in pain now, no relief, scared to drink anything but water, yet my referral is not until December. I just found this video today. Actually I had a cystoscopy a few years back but they didn't see anything.
Hi Antoaneta,
I guess I wasn't very clear in the video - but I was diagnosed based on my symptoms, my comorbidities, my test results (which didn't show anything) and my response to the medication.
I didn't have a cystoscopy.
Hi... Those are horrible symptoms to experience. I definitely do not miss them for sure!!
I hope you find a doctor that will give you the treatment you need because these symptoms are pure torture.
Good luck :)
Can you suggest a good urologist in Mumbai for painful bladder syndrome which helped you
Can I ask what medication your urologist put you on that helped?
Hi, I won't be able to share the medication I am on as it's specific to my comorbidities and I am not a doctor myself. It's always best to seek a urologist to understand what medications will work best for you.
what were the medicines that you were prescribed for MCAS?
Hi... as I am not a doctor, and I have my own comorbidities, it doesn't seem right for me to share what medication I was given. I can say that I am on anti-histamines along with medication for the bladder, but which ones I was given? - those will depend on your own symptoms.
Does increased basophils in the CBC mean MCAS?
Hi Priya,
In my limited understanding, "Basophils activated by IgE are known to release histamine" - so yes there is a possible connection between an increase in Basophils and histamine, but whether that is consistently happening and translates to having MCAS, is something only a doctor could clarify.
I hope this helps, somehow.
Great video! I feel that God is our perfect solution ...doctors try to help but their prescription alleviate a little but cuases ilother problems....what a bummer.
Each an every problem u quoted.. I'm currently suffering with it.. I had fibromyalgia n now PBS or IC which was found on my CYCTOSCOPY. This pain is such as if my bladder will explode 💥 even with the slightest urine erge..im desperately looking for an treatment for this issue..as I'm not even married now. God know wtz in my future
Hi Arpita, I'm really sorry to hear about everything you're going through. I hope you have a specialist urologist looking at your case, helping you out with the right medication? If not, it's always beneficial to seek a specialist who can understand all your possible medical issues before creating a treatment plan.
Can you tell us what medicuyou take for PBS, please?
Hi, as I have multiple additional medical issues, my medicines are given based on that so it's best for you to consult a urologist for PBS medication as it'll be based on your needs. I won't be able to share the name of my medication.
Can you share which medicine you were put on for ic?
Hi Ashley, since I have multiple medical conditions so as a rule I won't be sharing medication I was prescribed as it was in combination with other medicines and my other health issues. I strongly suggest you see a urologist for yourself and even ask for MCAS to be checked out - it's always best to get medication suited for your comorbidities.
Hello! Could you please tell me what your MCAS medications are? If antihistamines, which ones? X
Hi Sara, I am on three anti-histamines, but as a rule, I avoid sharing the combination of medications I'm on and their names.
Since I'm not a doctor, it won't be very sensible of me to do so.
What also helps me is a low-histamine diet which I speak of in this video and I've added the link for more information on that in the description box.
I hope that's understandable.
What medication helped you with IC/PBS?
Hi Roxana, unfortunately I can't share names of medication as I'm not a doctor and I also have various other medical issues which are taken into consideration when I'm prescribed my PBS meds. Please do seek out a specialist urologist - they'd be best to guide you on medication.
Have you tried Azo?
I have been having those symptoms. It really feels like a UTI, but tests come up negative....
Hi, it might make sense to see a urologist who can see all your symptoms and medical history as a whole. Please do investigate it.
Also look into interstitial cystitis
@@bubblesbubbles3415 is there any cure available for interstitial cystis
What medicine did your dr prescribe you? My doctor still wont give me anything
Hi Anita, I won't be able to share the medication I am on because I experience various other health issues too so my medication is also based on those.
If you are based in India, and would like to consult my doctor, then email me on footprintsnoboundaries@gmail.com for more information about him - his hospital does online consultations too so it might help to get a second opinion.
I had cystoscopy to look inside and they said nothing there. Having kind of UTI syndromes since few months and none of the doctors can see something 🥵
So frustrating....
I can imagine the frustration of going through all that - but I wonder if they've tried meds for IC/PBS to see if it gives relief?
Hey, just a head's up, when I had my cystoscopy when I was first experiencing my symptoms, it was completely clear, and that urologist referred me to a different one because they said they couldn't help me. My new urologist looked at my reports and diagnosed me with interstitial cystitis. Painful bladder syndrome = absence of infection, absence of visible damage to the bladder/urethra/ureters/kidneys with present, chronic or intermittent pain. The most I've been able to figure out is its tie to histamines. There was not much info on IC back in 2010, but I changed my diet, and was put on hydroxyzine (antihistamine) to help with attacks. Pyridium was a decent help for relieving the pain. I don't currently treat it, but it does get worse at times. In the last couple of years, I've spoken to functional medicine practitioners who've seen it tied to trauma or inflammation of the brain. I still think histamines have a correlation, which is why I'm now learning about mast cells, as I have a slew of other mystery health problems now, including fibro. 🙃
@@victoriarobertson266 Thanks for your answer.
It actually at the end turned out it’s bacterial infection in urethra.
So for anyone that can’t find any bacterias etc.
Ask your doctor for more specific tests. I have been tested for about 3 months until finally one doctor thought of something else and recommended good laboratory. Finally bacteria was found.
@@roxanakowalczyk2868 that must be so great to finally get some relief! I'm glad you met with a doctor who figured it out. :)
@@roxanakowalczyk2868 I am having the same problem. How yours got treated?
im 15 and really think i have this. Ive been to the er at least 15 times just this yr and everytime they said uti. its horrible. i hope to see a specilist soon,
I really hope a specialist urologist can give you the help I got. Wishing you better health Alexis.
I’m experiencing the same thing, what happened? Was it just a uti
Have you tried Azo?
@@bubblesbubbles3415 azo cranberry didn’t work, what kind of azo? I have this uti for 4 months and go be 15 times a day
@@bubblesbubbles3415 and what’s cause my recurrent uti is staph infection but sometimes it goes away but I still have the symptoms even tho it goes away on the urine test, it’s so hard to see a specialist because my doctor always trying to do other tests
Can u have this without the burning ?
Hi... I'm assuming you can because I do experience this without the burning some times. But the best person to check with is your doctor.
Hi does antibiotics not work for painful bladder syndrome? 💕
Hi Serena,
For me it didn't because it wasn't like a UTI, for which an anti-biotic works. But for yourself, it'll be best if you speak to your doctor about this.
Does anyone know how IC is diagnosed?
To be sure you have to have a cystoscopy
What’s the name of medication that ur doctor gave to u plz??
Hi Eliana, keeping in mind that I have multiple comorbidities, my medication is adjusted keeping in mind this. Therefore, I am refraining from sharing the medications I am on. Please see a specialist urologist who should be able to help you with medication that will / should work for you and if not, I've also understood that medication is a process of elimination and so if something doesn't work, the search then continues to find the right combination of medication.
I know I am not giving you the name of the medicine, but I still hope this helps.
I am suffering same way I don't know mam. I hv no UTI atall
Hi Susheela,
Like I mentioned in the video, I didn't have a UTI either, which is how the urologist's guidance really helped me. I hope you can find a good urologist. Which city are you in?
Mem please tell me what is the medicine name....
Hi Ajit, medication is prescribed based on someone's individual medical issues by a doctor. So I suggest you see a urologist who can prescribe the right medication for your personal case - this way you will get the treatment you need.
Dr Budrick on UA-cam has a great theory regarding persistent uti when tests are negative.
This also has to do with the pelvic floor muscles
Yes, from my understanding through my doctor, this partly does, which is where a pelvic floor therapist can be very helpful. In general the pelvic floor muscles always need work and need to be strengthened.
Can you have IC without the pain? Just frequent urination?
I think so but it can also be just a overactive bladder
Hi Aliki, I'm assuming so as I've known people to experience frequent urination without the pain but they've also had other symptoms. It's best to see a urologist about this.
Hey did you find what you have? I don’t have much pain but I feel like I need to pee frequently
Hi I've been suffering for a year. What is the name of this doctor pls
Here's the link to my doctor: www.kokilabenhospital.com/professionals/attarmohammadismail.html - I hope things work out for you and you feel better soon. Take care.
It feels like my ureter and bladder are in Spasm at night is this a common symptom ?
Have you tried Azo?
@@bubblesbubbles3415 what’s that ?
@@eloisecartwright7987 You can get it over the counter anywhere. Helps with bladder pain/burning
Hi Eloise, I've experienced that and after being diagnosed with painful bladder syndrome and taking medication for it, that's a symptom I rarely experience now. Have you been diagnosed with PBS?
I have the same issue it hurts but tests showing up no infection
I have chronic cystitis. And its slowly killing me😢
That's so sad :(( ...aren't any treatments providing some relief?
Hello, I have just found a powder that I am taking its called D-Mannose. Its really worked! I haven’t got the cystitis symptoms at the moment, but Since I have endometriosis I get cystitis symptoms every once a month for 3-4 days. The D-Mannose has worked better than the antibiotics*
God bless you
@@zednes2065 Have you tried Azo?
@@zednes2065 what were your symptoms of cystitis ?
I have been accused of dr shopping & looking for drugs, because I’m trying to get someone to take me seriously
That can be so frustrating - I have been borderline accused of Dr shopping so that I hear the diagnosis I'm looking for but I've found listening to my body, my instincts helping me through my medical journey. I don't know if this helps you, but I hope it does.
@@FootprintsNoBoundariesByShruti I have had repeated episodes of suspected urinate tract infections, severe pelvic / abdominal pain that took me to emergency, with
negative results tests, even though I blood and high white cells in urine.
I was treated for diverticulitis and knew it was wrong.
I have other auto immune diseases and somehow knew it was related.
I decided to go to a doctor every day until someone listened.
I visited six or more different doctors, on a daily basis over two months until someone would listen.
Finally one did and suggested it is intersistial cystitis.
Bingo
Can you please tell me the name of your rheumatologist?
Hi Anusha, I'd be happy to share that information but best to email me on footprintsnoboundaries@gmail.com for this.
Plz i want to know the medication
Hi Laila,
I have various medical conditions so my medicines for PBS is based on what works for me. I would advise you to see a doctor for your personal case as I won't be able to share medication that I take for this.
I hope you understand.
@@FootprintsNoBoundariesByShruti ok thanks
Did you get very high fever along with bladder pain?
I have an autonomic dysfunction which causes me to have fever everyday, so I personally wouldn't know if high fever is common with bladder pain or whether it is a symptom or not. I hope someone else who sees this comment of yours can help.
Is pain in bladder will be there if you have IC ??
Yes, it is a symptom for me and the few people I know - but since we all have varying symptoms, pain, may or may not be there.
@@FootprintsNoBoundariesByShruti is there any fixed symptom that will be there if you have IC?
And is there cure for this disease or it is lifelong problem
I think my mother has same problem..she had tested many times for uti but still has same problem..can you help me procedure to cure painful bladder syndrome?
Reply please
Medical Medium says it s caused by strep bacteria. Check out his podcast about strep revealed, on his website.
Do you guys have access to Azo medication?
Hi Bipul, every case is different, so I would recommend you take your mother to a specialist urologist in your city. If you are based in Mumbai, then I would be happy to pass on the details of my doctor. For this, you can email me on allthingsendometriosis@gmail.com
Also, it's very important that the urine sample is given properly as I've explained in my video. This will help in making sure your mother isn't getting a false positive.
Good luck.
Is there a way I can connect with you!! My story is quite similar to yours. I am from Delhi and under this syndrome since last 4 years. Please share your email id or a way to connect
Hi Anudeep,
you can DM me on my Instagram: instagram.com/footprintsnoboundaries/
or email me on: footprintsnoboundaries@gmail.com.
Hey, is there any way we could do a Skype call together? I am a young 19 year old girl, and have been struggling with the same story for a period of 6 months!
Hi Sam... I'm not a medical professional so I'm not in any position to give you any direct advice, but I do have a load of resource on this UA-cam channel, and also on my website: allthingsendometriosis.com/about-endometriosis/
I hope that helps :)
Be very persistent with your current doctor if you’re not comfortable you can always change I had a history of UTIs so I actually referred myself back to a urologist who immediately scheduled me for surgery for an official diagnosis of painful bladder syndrome you need answers don’t lose hope my dear you will get them , and this too shall pass. I do really really well for the most part very little pain of a pain free during the day it hits me at night I didn’t want to take the medication but I told myself I’m suffering for nothing , God did not give us a spirit of fear
How much females suffer 💔
Just so sad :( but I hope we can figure a formula that works for us - the diet, the exercise and of course, a team of medical professionals who believe us!!
Simple tell me how u get off from this Curse
Nice video but you pronounce 'interstitial' wrong :) It's a mouthful; try "inter" - "stee" - "shul".
Why do you have MCAS?
I don't know why I have MCAS
Can you please share the doctor details.. I am suffering from 2 months
Hi... please email me on footprintsnoboundaries@gmail.com for this and do let me know which city/country you're based in.
@@FootprintsNoBoundariesByShruti I am currently in navi mumbai
Name of doctor with adress plz
Infection cannot be disregarded if your are only testing with usual cultures. There are better methods, including PCR. This is specially relevant if you've had a history of previous confirmed UTIs.
I think for me personally that's the issue - how do I know if those were a history of UTIs? I feel repeated UTIs through urine tests gave me a false positive each time. Only after being diagnosed with PBS have I improved.
So yes, at no point have I said that a UTI infection can be disregarded but here I'm just explaining my experience because like me, there will be many who are dismissed with recurring UTIs whereas a UTI is not the right diagnosis.
Here is no one to understand me 😭😭😭
‘Can life be so simple’ 😹 nah not with chronic illnesses
Hahahha yep!! It's super simple for sure! :D
What’s the point of make the video ifs you’re not wish to share the medicine?
Point is to share my experiences - I always mention that in the beginning of my videos and write it in the description box of my videos. Medications are always prescribed keeping in mind a patient's various medical conditions - what they react and don't react to. If anyone needs medication for any medical condition then they should seek a doctor.