the things that never get mentioned

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I'm new to this forum, and love it. Have had countless UTIs /cystitis, one kidney infection, urine specimens sent off, pelvic ultrasounds, etc. 

I'm trying to manage and have been doing well, without a UTI for 8 months -  until last week. I've made a concerted effort to dothe following... drink a reasonable amout, make sure I'm not dehydrated (even with a good dose of alcohol), always pee within 5 minutes after sex, keep my fluids up the day after I've had "good sex" with my partner, always use a proper lubricant (as opposed to massage oils or good old natural lubricant), wash my pubic area after sex (usually I use a little liquid soap & pour lots of warm water over as I sit on the loo), and try and get lots of rest and minimal stress generally.

However, I've been doing all this, and when we have regular "nice" sex, no UTI. 

But whenever we have brilliant proper sex, BOOM... I come down with a UTI. 

So, I'd love to hear some answers to the following:::

Does anyone think lube makes a difference?

Does anyone think shaving pubic hair from the lower & anal area makes a difference? Does anyone think pubic hair actually serves as a barrier to UTIs?

Does anyone think that the stronger the orgasm, and general muscle contractions associated, the more likely to come down with a UTI? (I wonder if those amazing orgasms interfere with the bladder sphincter or bladder wall)?

Does anyone think it has been related to past episodes of chlamydia, with possible subsequent scarring of the actual urinary tract? 

...I don't bother with cranberry, ural, too much water, etc.. In the last year, I minimise my torture with immediate trimethoprim, a dose of valium to get some rest and take away the urge to pee, strain, etc... that definitely helps... but I'm not sure we are onto the cause of why the bacteria take hold?

 

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  • Posted

    Hi Tansy,

    You have Interstitial  Cystitis!!  Do you have two kinds of pain?  Most of the time you have pain all around your pelvic area and when you have sex then your bladder burns just like an infection?  It's a bug called mycoplasma/ureaplasma a no walled organism you get when you have sex...you are not born with it.  If you do not get it fixed you will end up with arthritis (rheumatoid or some other kind) or autoimmune like lupus!, it is not taught in medical school right now but a dr. by the name of McPherson Brown found that his rheumatoid arthritis patients ALL got better with tetracycline because this arthritis was caused by this organism and they had bladder problems.  You will need to be on antibiotics for years to get rid of it which is really hard to convince doctors cause they do not want to give out antibiotics.  When I read about this I was fortunate to have a caring nurse practitioner who said let's try it and put me on doxycycline.  I have never felt better up until then.  It will not help the bladder as much as the pelvic area, it is like I just do not have enough strength dosage, then I read that Augmentin works the best out of the only 3 medicines that work so on a mission to find a urologist to put me on that ( or I will go back to Col Trump who gave me the doxycycline.  I will have to be on this stuff til I die...have had this for 33 years and have rheumatoid arthritis!!  Two life sentences that up until I found out about the antibiotics, I would taken an offer for someone to kill me and I would feel better, in a heartbeat and I am not kidding, it is sooooo painful.  This won't kill you but that is  what you think about here and there, especially when you get the infection on top of the infection.  Everyone reading this and have constant bladder issues you will need to read up on everything you can get your hands on and fight to find a doctor that is sympathetic and will put you on augmentin (for years) and possibly minocine especially if you have RA or Lupus.  Type correlation of interstitial cystitis and mycoplasma/ureaplasma and then search correlation of whatever your chronic issues are.  Come to find out Dr.  Brown's work was shelved for 40 yrs, because all his patients were getting better on long term antibiotics, he wanted to have an official study to prove it...he kept asking for a grant and he finally got it 2 weeks after he died!!!  There is a newer book out that shares all this something called the breakthrough.  We all need to scream, cry, whatever to get the attention of these doctors to put us on these antibiotics and not just for ten days!  Find articles on doctors who have adopted these practices and bring them into the doctors.  I would think that if you can find teaching hospitals they may be looking into this so start there and make an appointment. Google correlation between mycoplasma and interstitial cystitis.  There are tons of articles.  Spread this to you girlfriends anyone that has either one of these issuses...make these doctors see the light.  I always said this is an infection.  Plus certain foods will make it feel worse...wheat, sugar, chocolate so stay away if you can.  May we all convince these God Syndrome doctors and I HAVE run into some!!!  Allyson

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    • Posted

      Hi, did you just say that you had it for 33years? How did you cope? I have a small son who is one, I'm so scared for my life, really don't know how to handle the fear. I had it since June. So 4 months. Tried doxy, clarotrymicyn, moxifloxacin all for 2-3 weeks nothing helps. Augmentin is not mentioned as a drug of choice for ureaplasma. Did it help with your arthritis?

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    • Posted

      Hi tanya. Can you get rid of it? And how did you know you still had it beside pelvic pain? The cultures came back positive? Sorry about my English, im from Argentina.
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  • Posted

    I forgot to tell you what to use while you are fighting for the antibiotics Tansy...tell the doctor you have Interstitial cysistitis and you need some more Macrobid 100 mg 2x days for the infections (they are used to this part) and Pyridium to get you thru the flares so you don't run to the bathroom every few minutes.  Then use cheap yeast cream (we do not have yeast) but the cream is soothing plus it will kill some bacteria.

    Make sure you research as I said so you can get educated and bring articles from doctors that have had success with the Augmentin and minocine.  Allyson

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    • Posted

      Hi strobelight

      I wonder if you can help me . I've been having vaginal itching ,swelling, redness and inflammation . For over 18 months now. I've also got new symptoms my back in pain full by my kidney and I have pain in my legs and weekends in my arms .

      I went to my gp they sent me to whiston hospital they said I had lichens selcreous . An gave me steroid cream no biopsy was performed.

      After researching I went back to my gp on tears after seeing it was cancerous. They then sent me to spire hospital . First consultant said I had thrush I got put on 6 months of pessaries . Second consultant said it was bv then got put on bv treatment which burned me.

      Back the the gp in tears because am still the same . They sent me to women's hospital . First dr took Sean bloods . Then send me to dr bell . While waiting for my app I ended up in a and e in pain they took swabs again . So my app arrived with dr bell 6 months more of thrush tablets . An still the same . I went back to dr bell again and she's put me on a further 6 months thrush tablets . I mented ureaplasma and she didn't no what it was microbiology said nhs don't test for it. My next app is in 2017 . Am in pain every day I can't cope no more . I can't have a boyfriend because am scared incase I pass somethink on .

      Am now going back to my go with my research tomorrow . Do my symptoms so like ureaplasma .

      I would be grateful for advice

      X

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    • Posted

      Hi Lucy, just seen your post - how are you getting on? Normally urea plasma has symptoms of painful peeing, pelvic pain, and recurring yeast infections If that helps at all? I think due to the nature of the symptoms, it is commonly misdiagnosed as BV x
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    • Posted

      Hi kay am still the same 😢Got appointment on the 28 march an now they are sending me the gum because they don't no what am on about

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    • Posted

      Hey, my symptoms are one to one! Also back pain. I was tested for ureaplasma and I'm positive. Tried 2 weeks doxy, 2 weeks clarotrymicyn, 3 weeks moxifloxacin nothing worked. Now on doxy again, but RA is getting worse b worse everyday. In scared for my life. Did you have any progress? Maybe some good news? I am loosing a will to live.

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  • Posted

    I used to have many bouts of cystitis.

    Stopped wearing pyjamas, found they bunched around certain

    Delicate areas. Gave up acidic dry white wine like

    sauvinguon blanc also greatly reduced wine intake.

    Try pino grigio. Drank more water and barley water calms bladder.

    Took a course of probiotics and probiotics. All helped a great deal.

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  • Posted

    Hmmm I just wrote a reply and then it deleted my info T_T

    I spoke to a helpline today as I also have the same problem. I always wash the perenium front to back before sex and wash my hands, peeing after does not work. They said the man has to wash his penis as well as his hands too. They also suggested I take Dmannose before and after (lots) - but its not fair, why do I have to make all of this effort while the man does barely anything? It makes me so so angry.

    Anyway, I hope that info helps you x

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