Is Interstitial Cystitis/Bladder Pain Syndrome genetic?
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- Опубліковано 27 вер 2019
- Suffering with pelvic pain or IC/BPS? Check out my playlist all about IC/BPS and what treatments are available to help you get yourself better.
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Information contained within these videos is provided to inform you of potential therapies available, and to improve the general awareness of pelvic health physiotherapy. It is not intended to be a replacement for medical advice, and I advise you to have a full assessment with a qualified medical professional as well as seeing a pelvic health physio. Please do not try any techniques without seeing a professional first to make sure that treatment is appropriate to your needs.
Thanks Jilly! This was interesting, and thought provoking. Would love to hear more about the genetics side as research progresses and more is discovered.
I believe that there is genetic component to interstitial cystitis. I was diagnosed with interstitial cystitis several weeks after I had a terrible UTI and my excruciating and debilitating symptoms never abated. I was only twenty three years old when I was first diagnosed with I.C. My daughter, however, was only seventeen years old when she was diagnosed with the disease. Her painful symptoms began after she was diagnosed with a painful UTI. When her painful symptoms didn't go away, she was told to follow up with a urologist. Shortly after she did, her urologist diagnosed her with I.C. as well. Unfortunately, her symptoms are just as painful as mine. Her painful and debilitating symptoms worsened after she was diagnosed with a second UTI. Now, she never wants to have any biological children in the future because she doesn't want her future children to inherit the disease. This, of course, has deeply saddened me. It's simply heartbreaking that she never wants to have any biological children but I completely understand why she feels the way that she does. I already had my daughter when I was diagnosed with I.C. but she doesn't want to pass this horrific disease onto her future children. I honestly wish that they would do more studies on I.C. and search for a cure because I wouldn't wish this extremely painful and debilitating disease on my worst enemy! I really wouldn't. I would have done anything to spare my beloved daughter from this debilitating disease and its extremely painful symptoms! I really would have. It hurts to know that she inherited it from me. My symptoms eventually got so bad that I begged my urologist to surgically remove my bladder but he refused to do so. He didn't seem to think that it would help but I begged to differ. I tried everything including hydrodistension of the bladder, silver nitrate installations, DMSO installations, RIMSO installations, dietary changes, medication like Elmiron, Elavil, Ditropan, antibiotics like cipro, antihistamines, pain meds, prelief, alkaline water, adding a teaspoon of baking soda or sodium bicarbonate to a glass of water a few times a day, Etc. Etc. Unfortunately, nothing alleviated my painful and debilitating symptoms.
Hi Jilly,
I am 19 with BPS and have just come across your channel! I definitely subbed. The best channel for BPS I have found in my 4 years of having it. Could you recommend to me great doctors in the US in New York or around NY? I am willing to travel far to see someone who is great, as I do not trust to see someone who isn't the most knowledgeable. I have so many questions for you but I know how many questions you have to answer every day!
I''m afraid I'm not familiar with the US medical teams. I'd suggest getting in touch with Dr Nicole Cozean - a physio with a specialist interest who may be able to point you in the right direction: www.pelvicsanity.com/dr-nicole-cozean
I have bladder pain syndrome after i'm taking appendix surgery, are they possible to be releated ? Now when my bladder flares up, my mind is like can't focus and i have ticks sometimes like people with tourette
Would pots fall into those syndromes as well?
I have fibromyalgia, migraines, allergies, eczema, anxiety and panic attacks and I’m a childbearing aged woman... and I also have interstitial cystitis! This is so interesting to me, I wonder if this is what caused my interstitial cystitis somehow!
I have it, my mum has it and my grandmother has it. My grandmother had to have her bladder removed and my mum now has a paralysed bladder so will have to have hers removed too. Terrifying knowing that this is likely my future too 😔
How can I talk to you? I’m feeling really bad right now
@@karle0822 Did you mean to respond to me or was this aimed at Jilly?
@@RaineMagyar I mean to you, I have anxiety right because of it
@@karle0822 What would you like to know? Im afraid as a stranger on the Internet I'm not sure there is much I can do to help other than recommend speaking to a professional if you have anxiety/concerns.
@@RaineMagyar do you have ic since you were born? I got it in my 20s and after that I had two girls. My oldest daughter is showing symptoms and I feel devastated.
Is there a correlation between C-sections and I.C? And if so what is your take on a hysterectomy (specifically for Adenomiosis) on how it will affect the bladder pain (mostly urethral in nature). Thanks for your time.
There isn't a proven link in the evidence. However, if your system is primed with multiple threats, a c-section could be considered another threat that there's always the potential to overact to. You also tend to have a catheter, which can be more perceived trauma. It's plausible, and rectifyable.
@@jillybond1502 Thanks for your reply. Rectifyable, how? are you saying that a hysterectomy "might" help? or are you saying something else. I have seen 2 pelvic floor specialists consecutively with no relief, yoga, have purchased the Therawand and It does not seem to do anything either. Once again thanks for your time.
@@akolley1 I think a hysterectomy is a big step, and may not change the pain. Its important to talk to all members of the medical team and listen to what the doctors say. However, working with a skilled therapist who understands pain is a good way forward - but you're also your own best expert. Find ways to move comfortably and slowly move your thresholds - you can get there!
Being a sexual assault survivor do u have anytips? I was recently diagnosed with intestinal cystitis so I'm due for a cystoscopy day after my bday and I can't stop crying because I rly hate being touched down there,gyno appointments are never easy for me always leave crying,will I be traumatized just like my gyno appointments?