Topic: Please, help legthy..Woman Problems UPDATE 11/9!!Please HELP!
AuntyLynn
Frequent Contributor (1K+ posts)
Member # 35938
posted
Beths - Sorry to hear you have joined this club.
I can't help but think that this stuff is largely caused by the antibiotics - which DO kill both the good and the bad flora! But it is well known that Lyme affects hormone balance too.
I highly recommend the Yeast Guard suppositories - cheap, and instantly soothing!
With just my paltry experience with "prophylactic ABX" for dental visits - which went on for years - I would take EIGHT 400 mg amoxicillan an hour before each dental visit (ridiculous right?) ... and would have yeast/burning for weeks afterwards, unless I then paid for a gyno visit, for what is now "over the counter" cream!
The combination Bio-K (50 mil fresh) before and after the abx "bomb" and getting right on the Yeast Guard made a huge difference for me.
I know there are lots of other very good fresh probiotics out there. I think this is key for soothing/nursing this extremely delicate tissue.
Here's hoping that you will both find answers for lasting relief.
Posts: 1432 | From New Jersey | Registered: Jan 2012
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dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
I'm going to look for Yeast Gard today. Thanks AuntyLynn.
Posts: 2387 | From New England | Registered: Aug 2011
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AuntyLynn
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Member # 35938
posted
I know CVS carries it. Look in the feminine hygiene section. Good luck!
Posts: 1432 | From New Jersey | Registered: Jan 2012
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tricia386
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Member # 29623
posted
I'm just so confused. I have pain in pressure in My bladder but no urgency just like its being pressed on or inflammed. I have burning down there and pain in my back and ovaries. I know my cervix is inflammed. I am on day 3 of flagyl. If it is pid, could it cause all these symptoms and how long would it take to go away. I am on my 4 pill of flagyl
-------------------- Lyme activated in April 2010 by gardasil vaccine. DX: Lyme,Babs,Myco,Bart 11/10 Treatment Started: 3/28/11 Posts: 1752 | From Albany, NY | Registered: Dec 2010
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AuntyLynn
Frequent Contributor (1K+ posts)
Member # 35938
posted
Tricia - I'm confused.
As far as I know, the drug of choice for cystitis these days is CIPRO... a 3 day course.
Who put you on the flagyl?
UPDATE:
OK I just re-read your earlier posts. A "substitute" Ob/gyn found there was still bacteria of some kind, and put you on 1000 mg flagyl for 2 weeks.
So that tells me she suspects you may not have completely conquered the PID.
Have you even BEGUN to take ANY kind of PROBIOTIC? You are on some kick-arse ABX, and it is likely strafing your flora of anything that might promote a natural mucosa! ORALS are best at this point because you don't want to keep stuffing things "up there" and wondering what caused the NEXT possible reaction!
You should be eating tons of yogurt, drink Kefir, get some dried probiotic "pearls" at the pharmacy ... or BEST to go to a Health Food Store that sells the FRESH probiotics! (Whole Foods Market has a LOT of different ones!)
And if you find at any time that you can NOT Urinate ... go to the Emergency Room!
We're hoping/praying for you Tricia!
Posts: 1432 | From New Jersey | Registered: Jan 2012
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tricia386
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Member # 29623
posted
I have an ultrasound tomorrow. I am just so confused and my Lyme Doctor and my OBGYN are just as confused.
I did the Q-tip test for Vulvadoynia on my own and was fine. I just wonder if this is IC or my PID is back...
-------------------- Lyme activated in April 2010 by gardasil vaccine. DX: Lyme,Babs,Myco,Bart 11/10 Treatment Started: 3/28/11 Posts: 1752 | From Albany, NY | Registered: Dec 2010
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mojo
Frequent Contributor (1K+ posts)
Member # 9309
This group kept me sane in 2005 when I first got vulvodynia.
Over the years so many things have helped me get to where I am today (still with pain but can wear underpants (way too big) and stetch pants (again big) but I mostly wear dresses.
High alklazing diet NO SODA NO artificial sweetners only low acid coffee ( like cold brew) Only use non/low toxic personal products (shampoo, lotions, hair products) No soap "down there" wash only with water Use only non toxic laundry soap and double rinse NO ALWAYs products - ladies if you have always THROW them away. Use organic pads and tampons (several good products at vitacost and Whole Foods)
much more but the ladies in the yahoo group are extremely helpful and a good source for support.
Posts: 1761 | From USA | Registered: May 2006
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AuntyLynn
Frequent Contributor (1K+ posts)
Member # 35938
posted
Mojo-
Just curious. What's wrong with the Always products? I would avoid anything Scented for sure (couldn't stand those chemical perfumes anyway) ... but should we be concerned about padding material too?
Posts: 1432 | From New Jersey | Registered: Jan 2012
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mojo
Frequent Contributor (1K+ posts)
Member # 9309
posted
There were studies done in the USA and Canada that showed Always products could cause reactions and even vulvodynia in women.
All of the OB/GYNs that I saw for my V pain (as well as liturature about it) said to not use Always products. They have some chemicals that are nasty, apparantly.
When you think about it the substances that make the pads (any brand) so absorbant are probably toxic as heck. Tampons, too. The cotton is bleached as well.
Think about what we've been put next to and into our bodies. Yuck.
So I do the organic pads and tampons as much as possible. Probably 90% of the time.
I agree not to use scented for sure.
Posts: 1761 | From USA | Registered: May 2006
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tricia386
Frequent Contributor (1K+ posts)
Member # 29623
posted
Well I got for my ultrasound today. I would t be so concerned but my cervix is inflammed
-------------------- Lyme activated in April 2010 by gardasil vaccine. DX: Lyme,Babs,Myco,Bart 11/10 Treatment Started: 3/28/11 Posts: 1752 | From Albany, NY | Registered: Dec 2010
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mojo
Frequent Contributor (1K+ posts)
Member # 9309
posted
tricia - let us know!
good luck to you, dear.
Posts: 1761 | From USA | Registered: May 2006
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tricia386
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Member # 29623
posted
Okay- So I had my ultasound yesterday and everthing came back negative. She kinda has her hands up in the air..I have an appt with my LLMD today.
Here are my symptoms. Extremely painful lower back cannot bend forward or backwards. Pain in hips and it hurts to walk pain shoots down to my legs. Stabbing pain in my ovaries. Pain in my Bladder and Pressure. Pain in my righ abdomen Extreme Fatigue I am still only urnitating about 7 times a day so I dont have frequency or urgency Bloated stomach.
I think that I have some infection thats not being treated right. Maybe I have a bladder infection and they cant culture the bacteria??
What are some things I should ask my LLMD?
-------------------- Lyme activated in April 2010 by gardasil vaccine. DX: Lyme,Babs,Myco,Bart 11/10 Treatment Started: 3/28/11 Posts: 1752 | From Albany, NY | Registered: Dec 2010
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My heart goes out to you as both my Lyme and vulvadynia are awful.
Pain is dreadful.
-------------------- RI Posts: 440 | From New York | Registered: Sep 2005
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tricia386
Frequent Contributor (1K+ posts)
Member # 29623
posted
Hi everyone-
Yes I am on VSL DS 2x a day.
Talked to my wonderful LLMD. I have an appt with a fabulous Urogyncologist in a week.
My LLMD is putting me back on IM Rochphein. After I finish the Flagyl on Saturday. I am to restart Septra and Zith giving them each a week as well as GSE.
I was on IM Bicillan but were going to try IM rochphein bc it helped me before.
She said I probably had pid and teh rochepin helped it. And that the doxy they gave me for pid could have irritated my bladder. She said its known to irritate IC patients.
She said she would hold off on the IC Dx'ed until I had proper DX'ed from an urologist. And not to take the Elmiron
-------------------- Lyme activated in April 2010 by gardasil vaccine. DX: Lyme,Babs,Myco,Bart 11/10 Treatment Started: 3/28/11 Posts: 1752 | From Albany, NY | Registered: Dec 2010
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What's wrong with Elmiron?? I never did take it, just wondering.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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AuntyLynn
Frequent Contributor (1K+ posts)
Member # 35938
posted
Very good news!
Glad to hear that someone could give you some better answers!
Posts: 1432 | From New Jersey | Registered: Jan 2012
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tricia386
Frequent Contributor (1K+ posts)
Member # 29623
posted
Well-
Had a cystoscope and nothing was found. Have an appt with MY LLMD at a loss. still stugaling with IC like symptoms and vulvodynia
-------------------- Lyme activated in April 2010 by gardasil vaccine. DX: Lyme,Babs,Myco,Bart 11/10 Treatment Started: 3/28/11 Posts: 1752 | From Albany, NY | Registered: Dec 2010
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posted
The thing that helped me was accupuncture. A spot or 2 over my bladder for the IC and the sciatic and hip nerves for the vulvodynia.
Haven't had any more treatments for a couple yrs but most of the time it's all still bearable. I notice the vulvodynia is always worse when those nerves in my hips and lower back are worse.
Like everything else, this is something that ebbs and flows. Oh, and I know for me, vitamin C is a big no-no. I keep trying every year or so but so far it always causes a flare.
Posts: 77 | From USA | Registered: Sep 2011
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glm1111
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Member # 16556
posted
tricia,
Sparkle suggested you might have parasites. I agree, especially since you have been traveling the world. Coconut oil fights yease as well as parasites, but is not enough to get rid of parasites if there is a bad infection there.
Really would be a good idea to try a parasite cleanse such as Parastroy, Humaworm or Hanna Koreger Wormwood.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
Lyme/coinfections can also cause nerve problems "down there"
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4167 | From WA | Registered: Feb 2011
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Pocono Lyme
Frequent Contributor (1K+ posts)
Member # 5939
posted
I recently started treating adrenal exhaustion and hypothyroidism.
After starting the hydrocortisone I thought I was getting a UTI. VERY uncomfortable and the pain radiated down there.
My first thought was the steroid aided in this UTI. Or possibly a yeast infection starting?
I did a search and found that bladder pain is a symptom of adrenal fatigue/exhaustion.
I've had the pain off and on but thankfully it never was a consistent pain for me. My heart goes out to you as it is debilitating.
It may be worth a shot to get the saliva stress test.
-------------------- 2 Corinthians 12:9-11
9 But he said to me, �My grace is sufficient for you, for my power is made perfect in weakness.� Therefore I will boast all the more gladly about my weaknesses, so that Christ�s power may rest on me. Posts: 1445 | From Poconos, PA | Registered: Jul 2004
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Ellen101
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Member # 35432
posted
Tricia,
I was wondering how you are doing? I had a similar experience several yrs ago. I was in tears went back and forth to my gyn and he had no idea what was wrong. I went to the ER and they had no idea as well. The burning pain was constant. I was convinced I had vulvodynia.
I went to a new gyn and he listened to my symptoms and before even examining me he told me I did not have vulvodynia. The symptoms that I was descrbibing, the way it suddenly appeared etc did not fit. Also once he did the exam he could tell as well.
He ran more in depth tests and put me on diflucan for over a month as well as strong vaginal yeast formulas as well as a low dose of estrogen. Within a week I was starting to feel well again and within a month I felt great.
If you are still dealing with this find a different gyn.
Posts: 1750 | From United States | Registered: Dec 2011
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
would you believe i have started getting this? one night i layed awake all night long from the pain.
i've tried vagasil, flagyl suppositories, douches, estrogen cream (both in and outside). nothing helps.
somebody said to rinse with water after you go pee or poo and not to wear any pads at all (I don't have periods). it's hard cause i have bladder leakage so i absolutely must wear them. i am not going to have that surgery either.
i lost my ob/gyn to retirement and can't get in with the new doc until november 15th. whew..long time.
wonder if i could describe this to my gp? could he help?
also is there a brand of leakage pads i can use? i wear poise moderate because if i didn't i would absolutely soak through any panties, jeans, etc., and the smell....ugh....
i know the pain and i really feel for you. i think there's more of us suffering with this than you.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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I did a search and found that bladder pain is a symptom of adrenal fatigue/exhaustion.
- Very interesting to me. My IC pain went away (mostly) during treatment for Lyme and babesia. During that same time period, I was put on cortef, which I still take.
Very interesting!
Randi... I'm so sorry that you are having pain!! UGH!!! You MAY have a bladder infection, so yes, your GP may be able to help you.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Dogsandcats
Frequent Contributor (1K+ posts)
Member # 28544
posted
I have been told I have " Chronic Pelvic Pain" and "IC". Mine is lower pelvic pain and is debilitating. It feels like the pain right before you deliver a baby. Constant with pain meds not completely helping.
Has anyone mentioned chronic pelvic pain to you? I could be off base, just trying to help.
-------------------- God will prepare everything for our perfect happiness in heaven, and if it takes my dog being there, I believe he'll be there.
Billy Graham Posts: 1967 | From California | Registered: Oct 2010
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posted
See blood in urine post. This is my problem too. I kept telling the docs that it felt like I was peeing out battery acid.
Posts: 482 | From Oregon | Registered: Feb 2011
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tricia386
Frequent Contributor (1K+ posts)
Member # 29623
posted
Hi all-
Had a cystoscope and it was negative for ic. Saw a top urologist and he said doesn't sound exactly like ic. They did the vulvadoynia test and said it wasn't that either. It was negative for yeast.
The fact that it went away when I had a cold indicates infection. The only thing that seems to help a ill is IM rocphein.
I have an appt with my LLMD on Tuesday hoping.g from some answers .
Through my research I have found a few things. Some with "ic" like symptoms have gotten broth cultures done. All this is basically is a urine test but they grow the specimen longer, bc some bacteria take longer to grow. Then they do an antibiotic sensitivity test to find out which one works. The labe is United Medical in virgina, just google. They find most often amoxicillan or augmentin help.
I'll keep you posted ...
-------------------- Lyme activated in April 2010 by gardasil vaccine. DX: Lyme,Babs,Myco,Bart 11/10 Treatment Started: 3/28/11 Posts: 1752 | From Albany, NY | Registered: Dec 2010
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tricia386
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Member # 29623
posted
So my LLMD is kinda stumped.
Were going to do a parasite stool sample, and I am starting physical therapy.
Also, were upping my IM rocphein shots. Then Zith, plaq, rifiampin and flagyl...hope something works...so sad
-------------------- Lyme activated in April 2010 by gardasil vaccine. DX: Lyme,Babs,Myco,Bart 11/10 Treatment Started: 3/28/11 Posts: 1752 | From Albany, NY | Registered: Dec 2010
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Catgirl
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Member # 31149
posted
I'm with Aunty, Sparkle and Gael. I have had an awful time for over a year until I started a) upping my probiotics to 400-500 billion per day, and b) worked on parasites.
Parasites love it down there. They even love the bladder. I think this is why so many docs have such a hard time figuring it out (they are all clueless about parasites to begin with).
And for the record, my ob and pcp told me that my cultures never showed yeast. Yet upping my probiotics really helped. You cannot rely on tests.
For me, probiotics & parasite treatment = pain free.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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Tammy N.
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Member # 26835
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I'm with Catgirl, Aunty, Gael and Sparkle. I would treat for parasites. You've basically exhausted all other avenues, so why not??
I'm still having discomfort down there, but I'm still treating a massive parasite infection. I believe that is the cause.
When I went for lymphatic massage and gave her my health background she said, yes, of course, there would be swelling/discomfort down there from a parasite infection. The lymphatic system is working hard and likely not able to drain all that it needs to, etc.
Best to you.
Posts: 2238 | From East Coast | Registered: Jul 2010
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