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Old 09-23-2009, 04:44 PM   #1
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ka34 HB User
Chronic Pelvic Pain

Hi,

I've been having chronic pelvic pain issues for four years now. I saw a gynecologist 2 years ago who told me to just ignore the problem, but clearly that hasn't worked. Sometimes it's so bad I have trouble sleeping, and it's ruined my sex life. I'm going to start seeing a new doctor and need some advice on what questions to ask and what procedures I should be looking at.

It's a burning sensation in my lower pelvic area and urinary tract (though no urge to pee or any sign of infection) and a feeling of inflammation. Moving my cervix is painful, and sex is painful. My lymph nodes in my groin often swell up and hurt, as do the ones in my armpits.

It started as a rash on the exterior vuvla seems to have spread. I've had every std test (several times) and two rounds of antibiotics (just in case) and never had a positive result or any effect from the antibiotics, but that was all two years ago.

I've also had a camera up my urethra to check my bladder and that came back fine (though it turned out I had a bladder infection at the time that he didn't notice, and I was the last patient on a friday so I'm not completely trusting of this test) and a sonogram that showed grape sized cysts on my ovaries.

What next steps should I take?

 
Old 09-27-2009, 07:06 PM   #2
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sunshine123 HB Usersunshine123 HB Usersunshine123 HB Usersunshine123 HB User
Re: Chronic Pelvic Pain

You could look for a vulvar pain specialist or Dermatologist who treats women's problems. Ask the Dr. if you could have Vulvodynia. Do a search on these boards. There's lots of info.

 
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Old 09-30-2009, 12:35 PM   #3
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Kaylana HB User
Re: Chronic Pelvic Pain

I had pelvic floor dysfunction that started (the doctor thinks) with a regular UTI. The symptoms you describe, minus the rash, sound exactly what I was going through. At one point a doctor even told me that I had Interstital Cystitis. I would ask your doctor about pelvic floor dysfunction. My urologist referred me to a physical therapist that specializes in treating PFD and just three months later I'm pain free. My physical therapist told me that some of the people she's treated had lived with pain for over twenty years and were still able to be helped by the physical therapy.

Good luck, and I hope that your doctor can find a treatment that works for you.

 
Old 10-16-2009, 09:32 AM   #4
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alexis1234 HB User
Re: Chronic Pelvic Pain

Kaylana,

This is encouraging. I just got diagnosed with pfd and had never heard of it and never heard of it affecting the bladder. So, am relieved to hear of someone like you who was treated successfully. I just started physical therapy.

Did you do anything yourself aside from the phsical therapy? Any medications? How long into the therapy did you start to notice an improvement. I just started a few weeks ago.

Did you feel like you continued to have uti symptoms and since no infections then the diagnosis of pfd? Just curious.

Alexis

Quote:
Originally Posted by Kaylana View Post
I had pelvic floor dysfunction that started (the doctor thinks) with a regular UTI. The symptoms you describe, minus the rash, sound exactly what I was going through. At one point a doctor even told me that I had Interstital Cystitis. I would ask your doctor about pelvic floor dysfunction. My urologist referred me to a physical therapist that specializes in treating PFD and just three months later I'm pain free. My physical therapist told me that some of the people she's treated had lived with pain for over twenty years and were still able to be helped by the physical therapy.

Good luck, and I hope that your doctor can find a treatment that works for you.

 
Old 10-20-2009, 09:24 AM   #5
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Kaylana HB User
Re: Chronic Pelvic Pain

I had never heard of it before I was diagnosed as well. My physical therapy started getting results for me in just a few weeks. I only went for around three months.

I did maintain some pretty strict routines during the physical therapy. A lot of them were to ward off UTIs and prevent irritation. I carried a small bottle that I got from a beauty supply store with me all the time. It was a bottle like you would use to apply hair dye and it had an angled tip. Every trip to the bathroom had the same routine. First I would sanitize or wash my hands. Then I would use the bottle to rinse around my urethra instead of wiping normally. I would pat the exterior area dry with toilet paper and then apply a thin layer of antibacterial ointment to my urethral opening. I know it seems like a lot of inconvenience, but it really did keep the UTIs away.

The other thing I'd like to recommend to you is a dietary supplement called Prelief. Every doctor I saw told me that acid affects the bladder. Prelief is sold near the antacids but you take it before meals to counteract any acid in your food. It's relatively inexpensive and it seemed to really make a difference for me until things got straightened out.

The most important thing is just to keep up with the home exercises and ice and anything else your pt tells you to do. Good luck and I really hope it helps you.

-Teresa


Quote:
Originally Posted by alexis1234 View Post
Kaylana,

This is encouraging. I just got diagnosed with pfd and had never heard of it and never heard of it affecting the bladder. So, am relieved to hear of someone like you who was treated successfully. I just started physical therapy.

Did you do anything yourself aside from the phsical therapy? Any medications? How long into the therapy did you start to notice an improvement. I just started a few weeks ago.

Did you feel like you continued to have uti symptoms and since no infections then the diagnosis of pfd? Just curious.

Alexis

 
Old 10-22-2009, 02:09 PM   #6
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alexis1234 HB User
Re: Chronic Pelvic Pain

Teresa,

Thank you for writing back and for the tips. I am really really encouraged that this has helped you.

My pt has me doing excercises at home, taking baths, and changing some things around in my diet and other stuff (more water, more yoga, more general relaxation).

Couple more questions for you if you have the time?

With the bottle, would you just use regular water?

What type of antiobiotic ointment? From the drugstore, unprescribed...like neosporin?

Ice the area? That I have not heard. I have to ask about that.

My doc thinks that this might have been a reaction to an undiagnosed and hence untreated for a long time uti. That the lenght of time affected the muscles. Had the uti been treated in time, no pfd would have ensued. This is what happened to you?

And you definately did have uti-like symptoms with the pfd?

Thank you again. I am so glad that you responded.

Alexis

 
Old 10-22-2009, 04:56 PM   #7
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Kaylana HB User
Re: Chronic Pelvic Pain

Alexis,

No problem at all. I'm glad I could be any help.

For the bottle I mostly used regular tap water. I imagine that bottled water might have been better, but I figured I showered with tap water and it was easier to carry an empty bottle and fill it right before I went to the bathroom. The rinsing was actually doctor's orders and it took me forever to find the right bottle! I didn't want something with a forceful flow on an already sensitive area, and I wanted something that was relatively portable. The hair dye bottle, as funny as it sounds, was really perfect for it. I got it at Sally Beauty Supply.

The antibiotic ointment was just over the counter from the drug store, like neosporin. My doctor also told me that I could use A&D Ointment (near the diaper rash area) if I was red or irritated.

The icing was supposed to be done after physical therapy (once I got home) and after I was intimate with my husband, and only if needed. My PT told me about a great way to make a soft ice pack. You mix half water and half rubbing alcohol and it freezes very cold and very soft. Basically she told me to wrap it in a towel or tshirt and just kind of sit on it for no more than 15 minutes at a time. It was mainly to help with any swelling and discomfort.

I definitely and absolutely had UTI symptoms. At first I was told that it was Interstitial Cystitis that was causing my symptoms. The simplest desription of IC is a UTI that never goes away. I had the burning sensation all the time, constantly felt like I had to go, the sensation of having to go was painful and urgent, I had pelvic cramps (like really really REALLY bad menstrual cramps) almost all the time. Mine actually started with a really bad UTI that triggered the muscle issue.

I hope any of this helps any at all, and please feel free to ask if you have any other questions. I know first hand how hard it is when you're in pain but be patient and listen to your PT and hopefully things will work out well for you. After over a year of nearly constant pain I thought I'd never see normal again, and thankfully after just a couple of months of PT I'm symptom free.

-Teresa

Last edited by moderator2; 10-22-2009 at 08:29 PM. Reason: please do not post websites except as described in the Posting Policy

 
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Old 10-26-2009, 11:11 AM   #8
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alexis1234 HB User
Re: Chronic Pelvic Pain

Teresa,

Since you are offering to answer...I am going to keep asking... Thank you for being so helpful.

What about during your period? Were your symptoms heightened then? I feel like mine are...The other time I notice a marked increase in symptoms is when I am constipated. I guess overall pelvic pressure just makes it worse. But you say you had cramps all the time? I feel like the area is just tender, not crampy in my lower pelvic area.

My Pt recommended, outside of her own excerices, yoga, stretching classes, and walking (this last to help with constipation). Any external classes you took and found helpful? Sauna?


Alexis

 
Old 10-26-2009, 11:29 AM   #9
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Kaylana HB User
Re: Chronic Pelvic Pain

Alexis,

Unfortunately I won't be able to answer you about during my period. I have a Mirena (an IUD like birth control) and haven't had a cycle in almost two years. I do occasionally get times when I feel a little bloated or overly emotional, and I think that those times are when I would have had a cycle if I were still having them. My symptoms were usually heightened then as well.

Constipation definitely caused heightened symptoms for me. Of course talk to your doctor, but I can highly recommend an over the counter medicine called Miralax. It's not so much a typical laxative as a softener. If you're backed up it can make things a little easier. It's also very gentle on the stomach, and doesn't result in running for a restroom (for me at least).

The best way I could describe the pain I had was calling it cramps. It was definitely tender, and some days were worse than others. The pain tended to ebb and flow. I felt a lot of it in my lower abdomen, just barely above the pelvic area, like you would menstrual cramps. Everyone is different though.

I didn't have any certain classes that I did, but my PT did recommend the same things yous has. Stretching, walking, any kind of gentle movement to keep things limbered up. I also saw my chiropractor a couple of times during PT. I have a bad ankle, and when it acts up I walk off balance which affects my pelvic alignment and lower back. Getting straightened out by the chiropractor seemed to make the PT's job easier.

Feel free to continue to ask away. I'll do my best to answer. Hope you feel better.

-Teresa

 
Old 10-27-2009, 12:37 PM   #10
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alexis1234 HB User
Re: Chronic Pelvic Pain

Teresa,

You are the best!!! Thank you!!! Every question I have I am not going to have reservations now and just ask.

Good to know about the constipation issue. And your (old!) pain area is where mine is. Again, good to know your story, cause sometimes not knowing too much about this and just reading online you wonder...seriously...this is from my muscles???

Alexis

 
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Old 10-27-2009, 01:41 PM   #11
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Kaylana HB User
Re: Chronic Pelvic Pain

Alexis,

The main reason I've been trying to be as helpful as possible is because I wish I had found someone that had gone through this that I could have talked to when I was going through it. (Did that sentence make sense?) It's always helpful to hear another person's experience and perspective, and just to know that you're not alone.

Teresa

 
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Old 12-07-2009, 10:11 AM   #12
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Laurette HB User
Re: Chronic Pelvic Pain

I had the Physical Therapy and unfortunately, I'm worse off than before. After my second visit the pain was so intense I resorted to taking Oxycodone. My pain started suddenly 20 years ago and I finally convinced my PCP to put me back on Tegretol which had been effective in the 90's and was until I had a seizure. I'll take my chances on that happening again if I get some relief until it happens.

 
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