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If anyone suffers from this, PLEASE contact me!! I've been having bladder and urinary pain for months. My urologist doesn't think I have Interstitial Cystitis, but I do have Trigonitis. I can't find any information on this. PLEASE HELP!!
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Hi everyone,
October 13, 2010 - 5:51amI posted on here a year ago re trigonitis. I hope that I can help somebody with my story. Basically I suffered for 6 years in total with chronic bladder pain which started after having sex with my boyfriend of 7 years now. I had NEVER had an infection before in my life even after sex so was quite surprised. That first infection started off years of pretty much constant pain and antibiotics. I had a cystoscopy done and my urethra stretched (ouch!!) and they found severe trauma to my trigone area. I soon started getting pain but with no infection to be found it was just inflammation. What I figured out myself was that the trigone area of the bladder responds to oestrogen. I had been on birth control for nearly 10 years in total and I believe this is what caused my bladder to become damaged. I came off birth control for other reasons and found myself having trouble with hormones. To cut a long story short I have low levels of oestrogen, once I came off bc I still had bladder pain but when I started taking evening primrose oil 1000mg a day my pain went away within a month. I only figured this out after stopping EPO and having sex and the pain starting up again within 24 hours after intercourse. When I did research on EPO it says it can act as an oestrogen in your body so the way I see it, it is helping my bladder lining build up and protect itself. I have now been pain free for 9 months - not a single twinge and I honestly thought it would be something I would have to live with forever. I can have sex twice a day and not get any pain after. I can't begin to describe how good it feels and wish my urologist would have mentioned hormones with my trigone area being so damaged. I'm not saying this is the case for everyone but if it can help someone not go through years of pain like I did I'll be happy. Plus I just wanted to mention I tried loads and loads of treatments from the candida diet to special teas/'vitamins and acupuncture and nothing helped at all apart from stopping the synthetic hormones and taking evening primrose oil - lots of it!!! Good luck everyone sorry that it's a bit long but I know how draining this can be xx
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hi annonymous (can you please sign in next time so i can see whos comments are who)
October 17, 2010 - 5:23pmi found your self help very interesting, lets face it if you can't find a way to help yourself then God help us he he he.
i used to take evening primrose for pms in the days when i still had a uterus. it didn't help pms but that doesnt mean it wouldn't help my trigonitis and it is good for the skin etc as well. i will give it a go for sure. i will wait till after my long awaited urologist appointment first though. are you saying that you think the synthetic estrogen may have caused your trigo? i am taking bio identical estro, testo, and a tiny teeny amount of progesterone. would that have good or bad effect do you think? i know i cant survive with out my hormone creams and neither could my husband!
cheers
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My OB/GYN has me on SottoPelle bio hormones..for 6 mos now...I've had Trigonitis for 10 yrs..at least that's when they cystogram/camera i n bladder found Trigonitis..no telling how long I had it before then...I've read each comment from the members here..and it seems each one will have treatment with success...but then come back and report the Trigonitis has returned...so seems there isn't a cure yet..only treatment for relief...also seems making the urine more alkaline with tums and baking soda helps ! I'm 62 and it seems as we age things happen to the lining of the bladder...so maybe the new buzz now with Dr.s is hormones may help restore the bladder lining/trigone...just getting through the agony till it works and whatever helps for each one...I had one 8 oz glass of merlot wine...and it caused pain for days now...I will keep looking for new discoveries from the medical community...at one time my OB/GYN suggested a device implanted in my back to block the pain in bladder..but that scared me.
December 13, 2011 - 3:28pmThis Comment
hello, after some months, I have more to say - when I read the last post, I can say I noticed myselfe some weird things-like my hair on my head was hurting so bad, on the top of the head, it could be low level of oestrogen...and at that time my trigonitis got worse..
October 17, 2010 - 5:41amIt went away by itself..and I continued to have bladder pain occasionaly..
I did again test on esherichia. and it was there. I prescribed myselfe antibiotics, I am well experienced, and have doctors in my familly.
I took strong antibiotics for a month and a half. At the same time I started WATER THERAPY, like 1.2l water in the morning before I wash my teeth, and the same amount of water some time in the afternoon, but on empty stomach. And the strongest possible cranberry caps, for the same perod along with the antibiotics.
And I will continue with water therapy for ever.
And at the same time I started taking OIL OF OREGANO.
And will never stop...
I attacked the problem on so many levels at the same time,determined to help myselfe logicaly, after experiencing so much pain and fear. I studied myselfeM,got angry, went shopping for all that, and now I am free of any simptoms, pain, Iam a normal person again.
I am not afraid for my partner, not afraid of sex, but I am carefull during sex, but with some positions like me on the top is over.Never again, it does so much harm...water before sex, after sex before and after whatever, OIL OF OREGANO NO1- IT RULES.
About hormones..we will see, for now they are ok, not bothering me....and I am washing myselfe down there whenever I can, I installed hot water on my toilet seat, so I can run water after every pee.
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Hi! Could you please contact me? I have trigonitis and I am so desperate! Could you please talk to me to share your experience?
April 21, 2018 - 7:45am[email protected]
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Hello.
We kindly ask that you do not comment more than once (asking the same thing). Your initial comment was posted and is visible. If community members following this thread wish to reply, they will. In the meantime, you can read through the many comments posted here.
best,
Helena
April 21, 2018 - 10:29amThis Comment
hi annonymous
October 17, 2010 - 5:13pmI have nevery heard of oil of oregano do you get it in the health shop?
i don't think i could physicaly drink all that water at once, did you build up to that level? I hope you are not upsetting you electrolyte levels by drinking too much water. thanks for the info. Do you think that you could sign in before commenting as it is diffult to keep track of peoples stories if all you see is annonymous.
cheers.
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I recently went and saw a specialist and he suggested that i may have trigonitis but i am un sure. No doctors have been able to diagnose my condition before and it has been present since i was approximatley 5-6 and has worsened over time. It's a sort of reaction tome consuming cirtus/juicy fruits, soft drink, juice, and anytthing like that, i'll even have to avoid alcohol my whole life, as they cause painful urination, lower abdominal pain and a constant urge that can be extremely painful and uncomfortable. I also have to drink 2L of water minimum a day or i may get it, even if i swim in salt water or chlorine i get affected. I'm currently only 16, has anyone heard of anything like this before?
August 27, 2010 - 3:55pmThis Comment
Anon - Thanks for writing and sharing your story. Good for you, at such a young age, to reach out and seek more information about your health. Since you have concerns about whether or not the diagnosis of trigonitis is connect I'm going to refer you to a link with in-depth information on this condition. http://emedicine.medscape.com/article/438185-overview
What type of specialist did you see? Are you comfortable with that doctor, or are you wanting to get another opinion? Did the specialist give you any advice or any kind of treatment plan to help you with your symptoms? Let us know more about what you're dealing with and we will see if there are ways to help you get more information and resources.
August 27, 2010 - 4:19pmTake care,
Pat
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My latest try to control trigonitis-
August 28, 2010 - 11:05amsee water therapy. In the morning before washing the teeth, take slowly 1.2l of filtered water, but not cold water. Sip by sip, to avoid choking. Do not take the glass away from the lips until you are done with it.
If the condition is really bad, repeat that in the afternoon once again.
Do not eat or drink before and after that at least one hour.
And besides that, during the day I take water normally as mush as I need, maybee another 1l or 1.5l. I start paying attention on my urine, and I feel fine since I am doing this (check the internet for more details), because it helps the whole system, all internal organs, brain...and the bladder as well.
I am doing water therapy every day for one month now and I am fine and ok.
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