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All Endo, PCOS, Adeno, Hysto's, Pelvic Pain this is the link to our new Exchange. It will take some time to get everything re-entered...but WELCOME ALL!!!
anyone else diagnosed with p.i.d and i.c??
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kruss09 posted:
Hi everyone! I was diagnosed with endo about 6 years ago (i was 16) after two laps i was still is constant pain/discomfort so through this wonderful group i was connected to a pelvic pain specialist in my are, he has been so wonderful. He diagnosed me with pelvic inflammatory disease, which is usually caused by an std but i don't have one so they aren't sure yet what is causing it. As well as intercistal cystitis, which is basically the lining of your bladder is weakened and causes lower back pain. There's a bunch more but i'll add that later, lol I was just curious if any of you ladies have been diagnosed with the same thing? and maybe it could help some of you, if your still having pain maybe one of these could be contributing!!
Reply
 
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BrittneyisaMommy responded:
hey have you ever had an IUD... wow i know this is going to make me sound like the IUD squashing monster but i saw on the commercials that they can cause PID... so I dont know... I dont have it so i dont have much knowledge of it and have only really heard about it on the mirena commercial
Mommy to a 2 year old little girl and a 1 year old little boy. Diagnosed with Endo. after DS was born. Two M/C 9/2010
 
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kruss09 replied to BrittneyisaMommy's response:
No, I've never had a IUD.
 
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hollyri replied to kruss09's response:
I have interstitial cystitis. I have a heck of a lot more pain than back pain, but it affects each of us differently.

How long have you had IC? Has any treatment worked for you? For me, the best thing was the diet. I tried instills, distension, Elmiron, rescue meds, and antibiotic regimens. They helped a bit, but after I got done with those, I was able to really focus on the diet changes. I still have problems, but it's not like it used to be. Have you tried the IC diet? Do you have flares? If you can discover what triggers the flares, sometimes you can prevent them from getting out of hand.

~Holly
 
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kruss09 replied to hollyri's response:
I follow the diet really well, except the soda.. which doesn't actually flare me. I've noticed that it's more fruit juice's that do, and alcohol. I have taken Elmiron but didn't notice that much of a change and because of the cost I stopped taking it after several months.My doctor also had me do some kind of physical therapy to strengthen my bladder and pelvic floor muscles. I had one instill and that seemed to really help for about 2 weeks, but there again you get into the cost issue, and now I need to find a new doctor because I stopped going to see the one I was using because we didn't see eye to eye on most things. I do have flares, sometimes I don't know what causes them, and sometimes it's because I drink something I shouldn't. But I'm young, so it may sound bad, but I am going to go out and have a drink sometimes, I just know I'm going to pay for it later.
 
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hollyri replied to kruss09's response:
I'm able to drink wine, but I have trouble with beer. I also have trouble if I have a diet soda or a fountain drink. There seems to be more carbonation in the fountain drinks, and one of my uros (I've been through 4, lol) told me to sprinkle some salt in sodas. It does seem to help a little bit, but not much.

I used to do instills 3 times a week, and after a while, they started to help, but not much. The uro who did them wanted to do botox injections, and I thought it was a bit risky at the time. Then he mentioned the TENS device, but I was involved in Brazilian jiu-jitsu and grappling and was concerned the device would get smashed inside me when I was in a match. I seem to be doing really well with the diet changes, and since I quit my really stressful job and my marriage (lol) a few years ago, things are better. Stress does cause problems for me. And stress makes me eat, and when I'm stressed, I tend to eat foods like bacon or cheesy things that can cause flares too.

I do miss cranberries though. That's the main thing I crave nowadays, and I am so jealous when people talk about cranberries and cranberry juice. Even cooking the life out of the fruit doesn't help for some reason.

I haven't had physical therapy, but I've heard of people doing it. For now, I'll wait. I just want to be normal again though. I want to take a road trip and not stop every 40 minutes. I want to be able to make it through my shift at work without people noticing that I'm running to the bathroom sometimes twice an hour or more. What I really want is to have my life back. My life before IC. I never worried if traffic on the highway slowed down. I never felt that I needed to wear protection. I don't even go to the movies anymore because I can't sit through one. I don't fly because I'm worried I'll get stuck on the tarmac and won't be able to get up and will end up embarrassed in front of a plane full of people.

Yeah, IC sort of sucks. But we have to adjust. Like I said, I have learned that there are certain wines I can drink without problems, and I'm learning that if I can control stress, I can do pretty well. It was hard to quit my teaching job because I really did love it, but I couldn't even make it an hour without having to leave my class. During a flare, it was really bad. But now, I have a stress-free job for the most part, and I am really thankful for that. It has made a difference in my pain levels believe it or not.

I'm glad the instills helped you. They are expensive, and painful, and time consuming, but if you get some relief, that's a good thing. I did feel better, but after a while, they weren't as effective anymore.

Oh, and herbal tea is all right. I can't drink black tea or green tea, but I can have chamomile and peppermint for some reason. I also learned that soy is really rotten, so try to avoid that if you can. The paradox is that soy is good for relieving endo pain, but it causes IC flares. Stinker, huh? I also discovered that a lot of vitamins are coated in things that cause flares, but there are some brands that use no-soy and hypo-allergenic ingredients and coatings. I've had good success with a few brands.

I did have a dr tell me I had PID almost 20 years, but another dr told me that it was probably endo instead. When he did the laparoscopy, he found endo and no sign of PID or scarring. I did have a uterine infection though that went undiagnosed for years. A fertility specialist finally discovered it with a biopsy (ouch!) and said I had probably had it for several years based on my symptoms. I've learned not to trust drs anymore because they miss stuff all the time.
 
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kruss09 replied to hollyri's response:
Thankfully my I.C isn't that bad anymore, or should I say at the moment. lol. I was going about once an hour. But now I'm at about every 2 and a half to 3 hours. It is frustrating to go through, especially at my age, I was diagnosed with I.C at 21 so it's hard to follow the diet, but I do my best.
The P.I.D I really question because from everything I've read and heard it's caused by an STD, which I don't have. So I don't know how I can have that if I don't have an STD. But the symptoms are sooo frustrating. Add that to the endo and I.C and I'm a ball of fun!! lol.
I know a girl who has I.C and got the TENS and she's had so many issues from it I would be to afraid to even consider it. She has permanent nerve damage from an infection she got and had to take heavy duty pain killers everyday.
Another lady I know (I work in a pharmacy so I've met several women with it) who was diagnosed like 20 years ago, and now has a catheter, which really scares me. I asked the dr I was seeing how often that happens to women with I.C and he wouldn't answer me. That was another reason I stopped going to him. I need to find a good urologist in my area, I actually haven't seen one yet, the Dr who was treating me was a Pelvic Pain Specialist
 
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hollyri replied to kruss09's response:
PID isn't always caused by STD, but it is a pretty common cause. I would question why the dr would think you had it. Sometimes they make assumptions about younger women, and that is totally unfair in my opinion. I wonder sometimes if that is why the dr I saw in my 20s said I had it and never really investigated my pain.

I've not had to have a catheter except for emergencies. And that is rare. My last uro wanted to teach me to self-cath, but that just motivated me to quit my job and change my diet even more instead. Sometimes mind over matter does work, lol. I haven't even see a uro in a couple of years now, and I don't feel that I really need to right now. So don't panic about a cath. Most likely, it won't happen. It's frustrating to be diagnosed so young like you are. I imagine it is hard trying to cope with it without letting on to your friends what is really happening. Now that I'm getting older, most of my friends think it's all hormone problems. I've been having hot flashes since my early 30s, so they figure the bladder things are related to that too. Sometimes age is a good thing.

There's a really neat product that my uro told me about called Prelief. You might know of it. It is a tablet that you can take before you eat or drink, and it can reduce the acid you intake. It even comes in a powder, and I sprinkle it in juice sometimes. Depending on the food or my current stress level, I take 1-4 tablets if I think I'm going to need it. It's really quite helpful. I got it at Walgreens. You might want to look into it. I used to take Urelle as a rescue med, but it's so darned expensive now that I can't afford it. I'm trying some OTC stuff, but it's not as effective.

Elavil is good for the nerve spasms, but I slept like a cat on it. Had to wean off that because I wasn't getting anything done.
 
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kruss09 replied to hollyri's response:
Most of my close friends know I have something going on with my bladder, so they are pretty cool with it. I'm not dating right now so that kind of makes me nervous when I do start dating someone, I don't want them to think I'm broken lol.

I haven't heard of Prelief, I'll have to try it!


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