My Chronic UTI Journey : Scarlett Howard
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- Опубликовано: 15 сен 2024
- In this episode Scarlett Howard discusses her journey with chronic embedded UTI. Joined by Dr Cat Anderson, Scarlett discusses living with the condition and the severity of the debilitating daily symptoms.
I don’t know if it will help anybody, but I was suffering from recurring UTI and constant pain even after the antibiotic treatment; the pain was not going away. I was losing all my hope but I gave one doctor a chance, and it turned out that I actually had bacterial vaginosis, which was causing the constant pain and the recurring UTIs. Once I started to treat the bacterial vaginosis, all the pain went away. So actually, in many cases, the pain after or before peeing is caused by vaginal issues rather than UTI. So if you are having those kinds of problems, ask the doctor to examine your vagina also. I hope this helps.
For people out there dealing with this.. please look up TMS (tension myosotis syndrome) or Mind body syndrome !! 1,000s of women have cured chronic UTI’s and all pelvic pain with this including myself! This is a nervous system issue!!
You don’t need to suffer for years .. do this work and it goes! Watch and listen to all the recovery stories ❤
Dr Howard Shubiner
Nicole Sachs (Spotify podcast)
Dan Buglio (Pain Free You) on RUclips
❤
What treatment did you use?
Hi there,
Can you please tell me what tests you went though. Do you mean that normal urine test for diagnosing UTI won't show this bacteria?
Thank you so much for making this video. You are a brave, beautiful lady. There are thousands of us suffering with this awful, debilitating condition. We are being badly let down by the medical profession. We need better testing, better treatment options and a CURE ! Money needs to be spent on this - it is ruining lives. Some of us can no longer tolerate the high dose, long term antibiotics and there is nothing else available for us. I have felt very close to ending my life on many occasions. We need change NOW!
I just healed mine in a week with a mostly meat based diet. I'm AMAZED it actually worked. Terrible awful burning and yes glass shards when you urinate. The only thing you have to lose is pain if it works for you!
A meat based diet cured my recurrent UTI.
Thank you for sharing this 💛
Just one point of clarification - UTIs can be a life threatening condition.
Untreated UTIs can and do lead to kidney infections (I've had 2) and sepsis for a number of people. UTIs can easily kill women and the elderly (for whom symptoms often get mistaken for dementia).
Thank you for sharing this. I went on holiday and came back with a uti in 2019 that never went away. Our stories are so similar. I waited 1 year with a diagnosis of interstitial cystitis. I got worse before I saw Dr. Bundrick who's test showed high loads of klebsiella esbl, e.coli and enterococcus.
I've been in treatment with long term antibiotics for 15 months (iv invanz and macrobid) and I just started feeling 95%. So scared that coming off antibiotics will put me back to square 1 as the bacteria is likely still hiding. But I'm not giving up hope. Sending you every ounce of well wishes.
I have the same issue as you. I’ve been through IV antibiotics many times infection ongoing since 2020. I just ordered a copper water bottle as copper kills bacteria as well. I’ve tried everything. I mean everything.
I have been researching around. Try D-mannose, Methenamine with vitamin C, probiotics, some cases can use topical estrogen. Check for kidney stones. Hope it helps.
I just cried so much watching what you've been through :( . I know how it feels mentally to be in pain and nobody knows/believe what you have is real. You try to hide it because you are ashamed to constantly having to run to the bathroom. I have a SIBO for now 20 years because of school bullying (long story short) and it's ruinning my life and since it's not life threatening, I tried to live through it but some days are harder than others. In France no doctors believes my condition exists since there are so little studies done on the subject. It's starting now to receive awareness because everybody talks about microbiota being important and everything, but it's kind of 20 years too late for me :( .
We have every right to complain. I would rather have an illness where I either get better or die than this. I also have severe TMD since 20 years told and between the two this is hardly a life.
Scarlett. I'm so sorry you've suffered in this way. You spoke my truth so eloquently. I've been suffering with chronic uti's since I was 2 years old. I've have surgeries, my ups and downs (my 20s were the worst until menopause.) Now, at 56, I've had to stop doing the work I love and basically just take each day as it comes. As you've described, the pain is horrific. Doctors don't take you seriously and there doesn't seem to be enough research happening. I too have found support through an embedded chronic uti facebook group. I will hold you in my heart and pray that we all find an answer to end this debilitating illness. Thank you for all that you do to bring this to public awareness. I've been so shy about being vocal regarding my illness. You give me strength to perhaps shout it from the ceilings so that someone actually does something to help and that those suffering don't feel so alone.
For people out there dealing with this.. please look up TMS (tension myosotis syndrome) or Mind body syndrome !! 1,000s of women have cured chronic UTI’s and all pelvic pain with this including myself! This is a nervous system issue!!
You don’t need to suffer for years .. do this work and it goes! Watch and listen to all the recovery stories ❤
Dr Howard Shubiner
Nicole Sachs (Spotify podcast)
Dan Buglio (Pain Free You) on RUclips
❤
Brilliant! Took me 8yrs to get my diagnosis. Its a disgrace that uti tests aren't fit for purpose! Good luck with your healing x
I'm watching this 1 year into treatment at Harley Street clinic and I can't thank you enough for sharing your story far and wide. If it wasn't for the support group you mentioned I would probably still be suffering today or *Trigger warning* I genuinely think i would have taken my own life by now. Thank you for making me feel less alone in how much pain and loneliness this illness and the neglect of healthcare "professionals" has caused. I really hope that this video changes more than a few minds and gives GPs and urologists the wake up call they needed long before now. Although there is no definite cure or long term relief from cUTI I want to share with anyone reading this that after 1 year on daily antibiotics, Hiprex and holistic healing I am now symptomless about 95% of the time. Though I am not finished treatment yet and it could be a while til I can come off long term antibiotics, I hope that others are able to get the relief I have and know that there is hope. To anyone struggling to cope with this condition please know you are not alone and it can get better x
Kate, please can you share which antibiotics you’re on and what dosage? Thank you so much for sharing your story x ♥️
@@Ida-Adriana I am currently on 200mg trimethoprim twice daily and 1g Methenamine Hippurate (Hiprex) 3x daily. Before trimethoprim I was taking 100mg Nitrofurantoin 2x daily but switched as long term use of Nitrofurantoin increases risk of neuropathy as a side effect
@@Bunnnnnnnyyyyyy hi Kate I was suffering with this for months. And anti biotics didn't work. I then went the natural route and found desert harvest aloe vera. Its stops the pain and burning and is completely naturally. You can Google for testimonials. Hope your doing better.
For people out there dealing with this.. please look up TMS (tension myosotis syndrome) or Mind body syndrome !! 1,000s of women have cured chronic UTI’s and all pelvic pain with this including myself! This is a nervous system issue!!
You don’t need to suffer for years .. do this work and it goes! Watch and listen to all the recovery stories ❤
Dr Howard Shubiner
Nicole Sachs (Spotify podcast)
Dan Buglio (Pain Free You) on RUclips
❤
I sympathize with you. I had this for 26 years. When I prayed to the Father for discernment he showed me to eliminate ALL traces of grains, sugars, starches and sweet fruits. Eat a keto style diet. You have carbohydrate intolerance and the bugs love it.
Same and almost instant relief
So glad it got better for you!
I teared up watching this. You are so brave and wonderful. My UTI got worse and put me in a wheelchair, and doctors everywhere in my country were telling me that there was no cure. I'm doing much better now, but not cured yet.
Wow
Hey girl how are you now??
Thank you for making this video; I relate to every word you said in this video no one understands what it is like for us I’ve only been dealing with this for just 10 months and it’s awful. Sometimes I pray to die as I loose hope that I will ever get better. But listening to others stories really helps me. Hope that you are able to beat this thing!
For people out there dealing with this.. please look up TMS (tension myosotis syndrome) or Mind body syndrome !! 1,000s of women have cured chronic UTI’s and all pelvic pain with this including myself! This is a nervous system issue!!
You don’t need to suffer for years .. do this work and it goes! Watch and listen to all the recovery stories ❤
Dr Howard Shubiner
Nicole Sachs (Spotify podcast)
Dan Buglio (Pain Free You) on RUclips
❤
Thank you for sharing your story! I’m four months post fulguration with DrB. I still feel exactly the same, sadly. Hopefully one day things will get better.
Have been the same for two years in pain and watched this don’t feel so alone thank you
For people out there dealing with this.. please look up TMS (tension myosotis syndrome) or Mind body syndrome !! 1,000s of women have cured chronic UTI’s and all pelvic pain with this including myself! This is a nervous system issue!!
You don’t need to suffer for years .. do this work and it goes! Watch and listen to all the recovery stories ❤
Dr Howard Shubiner
Nicole Sachs (Spotify podcast)
Dan Buglio (Pain Free You) on RUclips
❤
so sorry you have suffered at such a young age it is so horrible.
I also have chronic uti and it’s ruined my life for the last 2 years.
The pain is unbearable.
I’m in treatment with Dr Bundrick and doing much better but antibiotics can’t seem to clear all of it. I can’t wait to get fulguration to completely clear out all the embedded bacteria.
I hope you feel better soon Scarlett. Thank you for sharing ❤️
I am with this same doctor and been on the antibiotics for 2 years now. did you get the fulguration? did it help? I am sure he is going to tell me to do this as well. is it covered by insurance? is it outpatient? sorry so many quesitons
@@tinklebelle4792 yes, it's helped so much! 5 months post op now, definitely recommend. I had to pay for it privately as in NZ don't have insurance. Hope you feel better soon x
Hi Ally! How r u now?? Are you off all abx since fulgration ? Is procedure safe n where did you get it?? Am only two months in n worry I’m too far gone. I struggle to tolerate abx
I also had fulguration in Lima-Peru in a clinic named Urozen, It worked.
🧡🧡🧡 Sophie thankyou for sharing you're story/life I hear you ,see you,feel you . Its a horrific condition ! xxx
For people out there dealing with this.. please look up TMS (tension myosotis syndrome) or Mind body syndrome !! 1,000s of women have cured chronic UTI’s and all pelvic pain with this including myself! This is a nervous system issue!!
You don’t need to suffer for years .. do this work and it goes! Watch and listen to all the recovery stories ❤
Dr Howard Shubiner
Nicole Sachs (Spotify podcast)
Dan Buglio (Pain Free You) on RUclips
❤
I think WATER needed; 5-6 15 ounce glasses per day - one before each meal and water also with meals. So more than 5 or 6 glasses. Since the kidneys have to filter water in the blood - correct?....... constipation (or non poop) causes the poop to convert to gas - which causes the kidneys to work harder to clear the blood. That inflamed condition is produced by multiple factors - that burning sensation. Sugar and caffeine needed to be treated carefully; avoid after 2 pm. If the burning sensation reappears, immediately drink water. Kefir was recommended by someone; I would try.
I’m curious about dietary changes for this condition? By the way I just want to HUG you and all the women who are suffering with this. It’s really so so hard!
diet changes may temporarily reduce irritation but wont help the root cause which is damage from bacterial infection
Thanks for bringing up the topic of biofilm within the bladder. My family works in the medical circle, and most doctors aren't even up to date with new or niche medical researches. So don't expect family doctors to know, go straight to a specialist!
Where I live, my family doctor says I need to get referred to a specialist. He said because the ultrasounds of my bladder and kidneys came back looking good, that the specialist won’t see me. Even though I get a UTI 10 times a year for the last 18 years.
I cant stop crying!! I also suffer from cuti and this is soo hard to deal with..
It’s horrible
For people out there dealing with this.. please look up TMS (tension myosotis syndrome) or Mind body syndrome !! 1,000s of women have cured chronic UTI’s and all pelvic pain with this including myself! This is a nervous system issue!!
You don’t need to suffer for years .. do this work and it goes! Watch and listen to all the recovery stories ❤
Dr Howard Shubiner
Nicole Sachs (Spotify podcast)
Dan Buglio (Pain Free You) on RUclips
❤
Did you ever heal?
Mine uti has never gone it's been there 15 years it's destroyed my life it's never ending
Thank you Scarlett. I’m experimenting with serrapeptase and Nattokinase, while on cephalexin for ten days. I hope it will make a difference
I’ve been going through this for 10 years. I’m now 27 years old. I recently (past year) heard about bacterial biofilm. I’m worried about antibiotic resistance.
Omg 😫 needed to hear this! Can’t wait to see a specialist, every three months without fail. 🙄
Thank you for helping me understand Scarlett and thank you Ella x
So proud of you and thinking of you always ❤️❤️
Thank you for making this video.
Hi Scarlett, I hope you are getting better
Scarlett, have you tried phage therapy with Eliava? I'm waiting for a custom phage now for Raoultella Terrigena (very simialr to Klebsiella). It should be ready in 4 weeks. They have standard preparations such as intesti phage and pyo phage that you could try it. It works against common strains of bacteriia that cause UTIs.
This is so relatable, I hope there’s more help out there and a cure!
I have been with Harley street for 6 months now having up and down days.
Currently going through a flare and I just hope we can all get back to normal 🥲
It’s so crazy because I never ever had a UTI and last year I had my first that never left!
I never heard about this condition before shows how much the world needs to be educated about it.
I feel your pain I have had chronic bladder infection for 15 years still on going and I have excruciating pain now going through a flare up swimming pool makes it worse and hot weather makes it worse. I know exactly what your going through I'm suffering the same pain as you
There is a new antibiotic coming out soon called gepotidacin, it's for UTI's. Completely new class of antibiotics. :) Also, have you ever looked into Phage Therapy? It can be very successful in hard-to-treat cases. Bacteriophages are viruses that ONLY infect bacteria. You may want to look into it, and look at Eliava Phage Therapy center. Hope that helps :)
I m so sorry you are going through this. I was diagnosed with Ic but also get utis. Have you tried d mannose for utis as well as oil of oregano and garlic which are natural antibiotics. You also need to rebuild your gag layer with oral gags. My personal opinion after years of suffering is that antibiotics only make things worse because the bacteria becomes stronger and more resistant and so you enter a viscous circle. You also need to take loads of probiotics because antibiotics kill all the good bacteria in your gut making you prone to getting utis. You also have to make sure your vaginal microbiom is balanced because if there are not enough good bacteria there you lack the first defence system the bacteria encounter before making there way to the bladder. You must also cure your diet...no sugar or dairy products because they feed bacteria.
exactly! that antibiotic road is not for me neither . I am sad just watching all the meds and hearing of this suffering . I am seeing improvement also with also fasting , intermittent ,waterfast and dryfast . wishing you well
The antibiotic road did not help me either.
How do you rebuild you gag layer?
Thanks for sharing this❤
I’m crying 😢 right now because I’m in treatment w dr Bundrick on long term
Antibiotics:/ he said fulguration probably would be good for my trigone area and I’m on augmentin 2x
Did you have the fulguration? !
Hey girl how are you doing now ?
I would also be interested if it worked, how are you doing now?
Why this condition sends us insane:
-NHS urologists and GPs dont recognise or believe it exists.
-We have to pay thousands of pounds for our own treatment.
-the only treatment is long term high dose antibiotics for years which causes all kinds of problems.
-were in pain 24/7 and talking about it is embarrassing for us
-NOBODY UNDERSTANDS
Have people here tried biofilm disruptors? MicrogenDX?
Thank you for your story
I had a UTI like this for 3 months after a birth. I refused antibiotics, however, because I didn't want to harm my nursing baby. I took cranberry pills and d-mannose, but was still in pain. In desperation I went to a clinic where I also received a negetive test. While driving home I was asking the Lord for help, and one word came into my mind: "Kefir." I started drinking it by the quart. The clinic called to offer me a prescription for the pain, and I refused. My pain was gone after 2-3 days of drinking the kefir.
I sure hope you find a solution. That is the worst pain. I thought I was dying.
I was suffering from utis for 6 months. Didnt want to take the anti biotic route so researched. D mannose worked but even better is desert aloe vera capsules. Amazing godsend all pain is gone and can eat what I want now.
I was about to order something for the UTI.....when I realized I had little pain upon urination. What happened?? WATER!!.......I recommend 5 or more 15-16 ounce glasses of water before each meal; Bob Harper in his book "The Skinny Rules" has coffee once in the morning and water before and during meals. I'm on my 4th glass of water today. There seems to be a substantial difference in pain between 45 ounces of water per day ---and 75 ounces of water. Between 45-75 ounces the pain disappears. I'm also thinking I should boil water if you have municipal water - let it cool, then place in container. Bacteria in colon, bladder?? I currently use Brita filter beforehand.
Actually, it's 90 to 96 ounces of water; even 75 ounces is on the light side. Listen to: Dr. Berg, "Top natural remedies for UTIs" - many comments are actually very good. ALSO: loose fitting pants,, panties may help. Nothing rubbing the wrong parts!
I sick of being in pain too I feel I want my bladder removed coke alcohol irritate me I did flush out my uti once some years ago by drinking 6 bottles of 2L. For 2 weeks it's not easy drinking that much but it came bk then when I had a baby it went for 2 years and came bk. But the pregnancy was excruciating I can't work normal either you are me . I'm in excruciating pain again now
This is my story....
Thanks 🙏🙏🙏
I truly Love your Glasses )
I have the same problem, but unfortunately I did not find a good doctor who understands me, I am from Saudi Arabia
Artemis Clinic in Harley Street, London, does virtual consultations. Also Dr Brundrick in Louisiana, USA. Good luck!
@@prudencel1652 How much do you pay for appointment? And how much do the antibiotics cost?
@@Ida-Adriana you will need to contact the clinics directly for pricing. You can Google the names of the clinics I mentioned.
There is also a Facebook support group called 'chronic/embedded UTI' with around 15k members which contains a lot of information about this type of condition.
How are you doing now?
@@eduardoguizarperez8417
Thanks to God, after two years of suffering, God healed me
Is there any update on your condition?
I have heard kal d-mannose powder it has worked for many in other videos
But only those utis caused by e.coli bacteria
This is the same story as mine I thought I was going to die at one point I'm on antibiotics now and elmiron try serrapeptase and molalourin there natural bio busters and antibiotics you can take with your antibiotics I waiting for the vaccine
try functional medicine I am sure this can be turned around look at biofilms
10000% agree, immediately after hearing "infection's hiding in a wall in the lining of the bladder" (whatever it's supposed to mean) I thought of biofilm
Just watched your account of your uti, I’ve had blood in my urine for a year uti,s symptoms pain when peeing burning every time I pee, I do a urine test comes back negative for bacteria. I’ve been on a course of chemotherapy for an autoimmune condition that has not helped the urine blood had an ear infection and I’ve developed tinnitus. Could you just list what drugs they’ve given you to make you feel better? This has been horrible and nothing’s helping many thanks . x
Hi girl, did you try low carb diet? Higienism? Only plants and vegetals, avocado, sometimes fish. You can find information in Cala Cervera diet (is in spanish but you can translate) also I have some links for share about another people that cure in a natural way, maybe is helpfull
Just stop! That’s not helpful at all, I’ve tried all that bullshit, this is a chronic embedded UTI, not a joke. You think if it was as simple as low carb and ‘higienism’ does anything to this, you’re extremely mistaken and it’s not helpful to throw glib ‘advice’ around, when women are already told this is in their heads. Really not helpful.
Hi Scarlet . I am not in the medical profession i am just an ordinary human.but have ever tried a cup of Sage tea ? May be once a day.
Have you tried fasting ?
Kidney disease? Cut carbs, caffeine. Try Bob Harper's "The Skinny Rules."
Hi, we would love to get an update. How are you currently?
Do you inject UROMUNE or do you take it orally?
Your bathtub/bathroom could be a growth area for fungus........
💕
Did you try diet for IC and low carb?
How are you doing now?
I know what's your going threw
I don't feel human I have no sex life
Has anyone tried fulgaration?
I want to, I’m just trying to save up enough. It’s my dream to get it and be cured and pain free.
Marnie has and she’s doing so well now (from her latest updates) I will be going to the same doctor in Turkey to have Fulguration in the near future. I know a few ladies have gone and have been doing well. I’ve had this for 15 years. Ive missed out on so much and I need this to be over. X
@@ThatBlackDog I would like to aswell but I’m wondering how long does it keep you pain free for? Not much evidence!!!
@@user-jb3yh7ez7c well it burns out the infection that antibiotics may not be able to reach, there is studies showing that whilst in bio films the bacteria can survive being left in bleach for more that 24 hours so anti b’s may not be able to reach them so fingers crossed it would be a perm solution unless it happened again
i have now!
Unhinged advice for everyone: if you're in agony and suicidal from pain, just take 1 FULL dose of antibiotics for minimum 5-7 days. I know doctors gate keep antibiotics in order to prevent resistance yada yada. If you know your body well and understand basic medicine, just grab a pharmacist by the scruff and tell them "give me the good shit". From someone with compromised immune system that over-rely on antibiotics for survival, 1 dose ain't gonna do jack in harm. Trust.
You are so brave
I am too suffering with chronic
There is help out here unfortunately
Orthodox does not work
You HAVE to try a functional.medicine or a natropath nutritionist who specialises in functional medince
They look at the cause if what is going on
It's the antibiotics that are cause the problems
It's all about building up the microbiome in the gut
Please look into
Invivo health care call them xxxx ,