Secret Suffering - A resource community for women who experience pelvic and sexual pain

I just want to thank all of you who have had the willingness to be the first to get our site started. I know how much courage it takes to reveal such personal stories. Please encourage anyone who has suffered to share their thoughts. In addition, if you know any experts, please ask them to write me so we can have them post in our Expert’s Corner. And always feel free to call (888) 241-1461 or use our contact form to get in touch with me.

As a current patient of Dr. E’s, I find this site to be a god send!  I have had a very difficult year and a half with several ailments including IC, chronic pelvic pain, irritable bowel syndrome and chronic fatigue syndrome.  I was in the same position as many of you…doctor after doctor, test upon test, all with no solutions.  When I stumbled upon Dr. E, I was in the process of having another needless surgery.  After two and a half hours of crying at my first appointment with Dr. E, I finally felt that there was actually a ray of hope.  My husband was delighted that someone finally admitted that I really did have problems and they weren’t all in my head.  Believe me, I was reluctant at first!  It took over three months for me to believe that Dr. E and his staff could really help.  After two rounds of bladder instillations and getting therapeutic relief with drugs and therapy, I started to feel so much better! I’m finally on the RIGHT road!  Dr. E and his entire staff are just wonderful; the caring and compassion they project are tremendous assets when you are dealing with these horrible diseases. However, I am still afraid of sexual pain.  It has been a long time since I’ve had relations with my husband and it’s a big obstacle for us to overcome.  Granted it, he is very understanding but it does take it’s toll on your relationship.  The pain is so intense afterward that it isn’t worth it for me; I actually become physically sick from the discomfort and feel terrible for hours.  Are there any suggestions or comments on how to overcome this fear?  My heart is with all of you!

This isn’t the beginning of my crazy story but I think if I tried to write the entire thing everyone’s eyes would cross and you all would never want to read again! Lol. I’ll start with the important stuff.

When I was 16 yrs old  I started getting that funny burning feeling whenever I’d go to the bathroom, run too much, work out too hard, get too stressed out, or try to have any kind of sexual activity. It came and went over the next few years but never stayed around long enough to make me want to talk about it or have to tell anyone that my vagina felt like I had been sitting on a blow torch. That somedays is hurt so bad it made me sick to my stomach, get the chills, and have to attempt to pee every 3 seconds…unsuccessfully. I tried to tell myself that I had done something that made me deserve this and that when it was meant to go away it would. For a long time I just passed it off and tried to continue on with my life which kind of, sort of worked until my second year in college.

 I came down with a nasty, devil horned, fire breathing, extra burny, bad karma having UTI when I was 18. I let it go for too long and ended up in the hospital for 3 days. They put me on massive amounts of antibiotics and told me to check back in in 2 weeks. 2 weeks later I was feeling much better and it almost seemed as if everything went away. One week after that I was in the worst place of my life which continued on until about 8 months ago. After it got really bad I went through 4 more emergency room visits, 5 different gynos, 3 new urologists, about 12 different other kinds of doctors, 2 laparoscopies, endoscopies, and colonoscopies, every ultrasound offered in the world, to have them tell me that there was nothing wrong. That it was in my head and that I needed to see a therapist. Great! Thanks. Very helpful!

 I ended up taking a 4 month medical leave from my job because it was to the point where I couldn’t even stand up or walk very well let alone make it through 5 minutes without running to the bathroom 435 times. I went home to stay with my parents in Pennsylvania until we could figure something out. One day, after spending hours on the phone trying to get appointments with every uro-gyno I could find in the country my cousin told me in passing about this doctor she had went to that she thought might be able to help me. I reluctantly made the call thinking that the receptionist was going to brush me off or they were going to tell me that  they didn’t have anything available until August of  2010. It was the first ray of light that I had seen in years. I got off the phone with Janet from Dr. E’s office that day and cried for hours because for the first time in forever I felt like someone understood and didn’t think I was crazy.

 I began treatments with Dr. E in December of 2006 for IC, Vulvodynia, and Pelvic Floor Dysfunction. I changed my entire diet, took my meds religiously, went to physical therapy, changed my negative attitude about life into a positive driving force, got rid of my stupid boyfriend that never understood the pain, studied every single aspect of IC and painful bladder syndrome and jumped head first into the IC and sexual pain enlightenment movement.

The more we talk the more they can’t ignore it anymore. The more we tell our stories the more young women feel comfortable speaking out about their pain. This is something that affects so many women and even some unlucky men and we all just need to be heard. Our pain isn’t  weakness at all but something that helps build up our inner self and gives us the strength to pull through no matter what kind of setbacks our bodies throw at us. Stay strong!

I need to say thank you to Dr. E (and everyone at the office) for being my saving graces and to Susan for giving me the opportunity to get this all out. I don’t know where I would’ve been if it wasn’t for the all of you!  You’ve helped me more than you can ever know.

My story begins sixteen years ago on a vacation to the beach with my husband and young children. I took my five year old  on a bike ride. I of course was driving and she was in a seat on the back of the bike.  I was sitting on a very narrow andhard seat, peddling away. I was also eating fresh tomatos and drinking orange juice during the vacation.  The day after we arrived home, I awoke to severe pain in my vagina. I made an appointment with my gyn who said I had irritation and perscribed a hydrocortizone ointment to use for a few weeks.This did nothing for my condition. I was tested for all kinds of infections, but all the tests results came back negative. Finally ,one evening  my husband  placed an advertisement in front of me . H e didn’t say anything. I looked at it and just put it aside for a few weeks. I thought Ijust could not go see another doctor.   Finally. I decided to see what this one had to say.I made an appointment with Dr. Echenberg and this was the beginning of finding” the light at the end of the tunnel.” In the first fifteen minutes (itwas the first time during this whole experience  of  doctors) that someone was taking the time to listen to all  I had to say.  Dr. Echenberg diagnosed my condition as vulvadydia. I have been getting treatment from him and I feel much more comfortable.  I wanted to share my story in order to help other women  find help with this condition.

saw the whole condition, not just parts of it.i received treatment

I am a 38-year-old woman with 1 child. For years I had episodes where I complained of the same thing, urinary frequency, bloating, fullness in my abdomen.  Ultrasounds were always normal as well as urine tests.  Since I had my daughter 3 years ago the symptoms became more severe and more frequent, especially within the last six months.  My GYN kept telling me to just “go back on the pill” since I had PCOS, leading me to believe that my ovaries were the problems and being back on the pill would resolve things.  Well, it didn’t and my frequent urination, pain, fullness and bloating exacerbated. I found it hard just to sit to work.  No over-the-counter medicines helped.  I was frustrated and cried at times.  I even asked the nurse at my GYN’s office if they would consider a hysterectomy.  That’s how bad the pain was for me.  They didn’t seem to be hearing me or even doing any further investigation.  Thank goodness the pain became severe enough that I had to go to an outpatient emergency center.  I saw a physician there who thought that I might have interstitial cystitis and gave me the name of Dr. Echenberg.  After all of my GYN tests came back normal, I made an appointment to see Dr. Echenberg.  Thank goodness I was finally pointed in the right direction.  Dr. Echenberg diagnosed me with insterstitial cystitis and chronic pelvic pain disorder.  I sat in his office and cried because I finally felt like I wasn’t crazy, that my pain and other symptoms were real.  It has been about two months since the start of my treatment which involves medical therapy, diet change, physical therapy and bladder instillations.  I feel significantly better from the day I arrived in his office.  I am a much better mother to my daughter becuase I feel better.  I look better becuase I feel better.  I even get along better with my husband because I feel better.  All around, life is good with the therapy I am undergoing, and I imagine and hope that I will continue to improve and fell well. 

Secret Suffering Newsletter
Issue #1 - September 23, 2007
Publisher: Susan Bilheimer
susan@secretsuffering.com
http://www.secretsuffering.com
Copyright 2007 Very Peri, Inc.

Circulation: 175

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“Helping women cope with sexual pain and it’s impact on
their relationships”
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Please forward this ezine to anyone you know who would
benefit from the information contained in this newsletter.

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In This Issue:
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1. We’re up and running

2. Update on our book

3. On our blog

4. News for you

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1. We’re up and running
==================================

I’m happy (and relieved) that our website/blog is
finally up and running. I’ve got a long way to
go to get all the information we’ve accumulated
into the site, but it’s a start. I’ve been
in touch with lots of other sites who have great
information on all the conditions that cause
sexual pain and we’re getting a very positive response.

If you haven’t been on the site yet, please be
sure to check out the Resources page.
We have included many excellent books and website that
contain a great deal of helpful information.

We’d love for you to send us any information or news that
you think would be interesting to other women (or their
partners).

Plus, we encourage you to share your story in
our Healing room. We just ask that your story focus on
your condition as it affects all of your relationships.

If you want to comment on any other issue about your condition, feel
free to post in the Random
Thoughts page.

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2. Update on our book
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You may know that in conjunction with the site,
Dr. Echenberg (Dr. E) and I are writing a book, also called
“Secret Suffering,” about women’s sexual pain and
relationships. Now that the site is up, I’ve got
to get moving on the book. We actually have a publisher
interested, which is very exciting.

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3. On our blog
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Dr. E responded to a woman who has been through much
of what many of us have experienced.

You can read her post in Random Thoughts.

Dr. E responded:

Your suffering with pelvic pain is exactly why we started this
project. Our chronic pelvic pain center has drawn many hundreds of
women like yourself with relentless pain in the pelvic region often
associated with bladder or bowel issues as major triggers. Your
history and symptoms seem to indicate a strong possibility of your
bladder as a primary trigger for your pain.

I cannot make a specific diagnosis, but you need to use as many
resources as you can to look into what is so commonly mis-diagnosed
or not diagnosed at all - “Painful Bladder Syndrome” or otherwise
known as Interstitial Cystitis (IC).

About 60% of otherwise undiagnosed chronic pelvic pain is triggered
by this condition. IC effects possibly up to 20% of all reproductive
age women in the USA. A combination of symptoms of urinary urgency,
frequency, and pain in the pelvic region can be made fairly readily
especially if all other anatomic pathologies have been ruled out as
in your case.

On average IC is not diagnosed for up to 5 or 6 years after symptoms
get significant and women usually see multiple specialists and get
multiple invasive procedures before diagnosis…
Read more here.

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4. News for you
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A medical website in the UK, Menopause Matters, conducted a study of
over 1,000 women and found that 53 per cent of menopausal women
experience painful sex.

It’s a sad fact, but one that may give you comfort that you aren’t
alone, even if you are not in menopause.

By the way, Dr. Echenberg is on his way to Panama today to
give the keynote address at a pain conference. To check out
other events, go to our Events page.

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There’s a new set of procedures called “vaginal rejuvenation” that
are billed as improving sexual response and enhancing vaginal
appearance. OK, I, for one, cannot fathom why I’d need to
enhance the appearance of my vagina, but maybe it’s because
I don’t look at my own too often.

On a more serious note, however, the American College of
Obstetricans and Gynecologists are urging women to be wary of
these procedures. They can lead to a host of problems, including
increased pain during sex. To read more, here is an article from The
Ledger.

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Suffering Newsletter” in your own print or electronic newsletter. But
please include the following paragraph:

Reprinted from “The Secret Suffering Newsletter,” a free ezine to
help women cope with sexual pain. Subscribe at
http://www.secretsuffering.com/ and download the free ebook “How to
Find Relief from Vaginal/Vulvar Pain.”
If you like this newsletter, please pass it on to your friends,
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You are receiving this because you signed up for it at The Secret
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PRIVACY STATEMENT: Very Peri, Inc. and Secret Suffering will never
distribute your address to anyone. Period. Promise.

=======================================================
Copyright 2007 Very Peri, Inc.

Susan Bilheimer
Very Peri, Inc.
Loggers Run
Boca Raton, FL 33428
(954) 778-9160
(888) 241-1461
susan@secretsuffering.com

I suddenly started getting pelvic pain in the year 2005.  It started with a simple urinary tract infection.  I took the antibiotics and the infection went away.  The pain never went away.  Over the past 2 years, I have had (I think) every test I could have to find the origin of this pain and correct it.  I have had:  Ultra Sounds, Urodynamic testing, Cyscotopy, Laparoscopy, Pelvic MRIs and of course urethra dilation.  All to no avail.  The Dr.s can’t find anything physically wrong with me that would be causing this pain. 

I am currently going to a Pain Management Clinic through Kaiser, and to be honest all they are doing is giving me narcotic drugs for my condition.  I am taking Darvocet and Vicodin.  I hate it!!!  With the pain and the pills I have become a different woman in the past 2 years.  I am depressed, I sleep a lot and I cannot hold a full-time job.  I have tried to get disability but I was denied 2x.  I am not getting any satisfaction from Kaiser and I don’t know what to do anymore.  Does anybody please have some advice for me?

Sometimes I am at my wits-end as to what to make of my life.

In May of 2007 I was finally diagnosed with IC, Vulvodynia, and pelvic floor dysfunction. I suffered with endometriosis for many years and that was diagnosed in August 2006. After being diagnosed with IC I gave the drugs prescribed by Dr. Echenburg 2 months. After frustrating bad days I went a different way.

I first detoxified my body with the help of a colon hydrotherapist (colonics). This brought out all of the toxins and after going for 2 months straight, I am down to every other week. I also founs out thw Lupron Depot depleted the electrolytes in your body and the calcium depletes the magnesium. I started building my immune system back up and the pain and frequency went away!

Once a month I go for a massage and acupuncture. I have so much energy now, and I hike a good 5-6 miles a day in the parks and woods. I also started seeing a holistic nurse practitioner and sje ran loads of bloodwork including the food allergy panels. I cut out gluten, wheat, and processed foods. I can have some wheat and I make sure it is organic. Many products I use are organic and my meat comes from a local meat market. Changing my ways helped me to go from 140 pounds to 126 pounds. I was a size 0 and would like to fit into my old jeans before Xmas.

This past year with my health has prompted me to go back to school for a career in the holistic field and help others like me. I need the flexibility as a 9-5 job is in the past and part time is the future. Thank goodness for Dr. Echenburg and his staff. They are wonderful and care. I liked the fact that they are open to holistic and feel that both can work together.

I’ve been thinking about water. No, not necessarily drinking it, but thinking seriously about it. My best friend insists most of the world’s ills come from dehydration and that some of my myriad symptoms would subside if I would just listen to her, like my brain fog (you know, that frantic thought, “Where did I leave my glasses” and an hour later, “Oh, they’re on my head”). I, personally, get nauseous from drinking water. But I can’t drink soda, coffee, most tea, and even club soda causes me to have an IC flare-up, which I find completely puzzling.

My best friend, by the way, is not a doctor, nurse, or healthcare practitioner. Just practical. She solves most of my problems by starting off with, “Hmmm, well my grandma and grandpa would say..” And usually ends with a solution so simple that I just roll my eyes. And then I try it, whatever it happens to be, and find that she was right.

So, she didn’t care that water made me nauseous and insisted that I just needed to drink it, but slow … a sip every two minutes or so. According to the Mayo Clinic, in an article about the subject, she’s totally right.

The average urine output for adults is 1.5 liters a day. You lose close to an additional liter of water a day through breathing, sweating and bowel movements. Food usually accounts for 20 percent of your total fluid intake, so if you consume 2 liters of water or other beverages a day (a little more than 8 cups) along with your normal diet, you will typically replace the lost fluids.

I bought one of those jug thingies that everyone carries around. Actually, I’ve bought three (four?) because it took until last night to find one that didn’t leak all over.

I’ve been amazed to discover how little water I drink. But I’m really trying to drink the whole 64 oz. Turns out that you can’t really judge whether you’re drinking enough water by thirst. Just today, I found a great article from the Interstitial Cystitis Network that mentioned this fact. Though it’s from 2001, it still rings true. According to the author, Constance Burtnett:

Doctors and nutritionists are starting to suspect that dehydration plays a major role in many physical complaints. Many people don’t realize they’re not drinking enough water because they don’t feel thirsty. But lack of thirst is actually a signal that you’re dehydrated. Dry mouth is an SOS signal that your body is in the late stages of severe dehydration. When the body is properly hydrated, your normal thirst mechanism kicks in and you start to feel thirsty again when you need more water.

And again, from the Mayo Clinic’s article:

It’s generally not a good idea to use thirst alone as a guide for when to drink. By the time one becomes thirsty, it is possible to already be slightly dehydrated. Further, be aware that as you get older your body is less able to sense dehydration and send your brain signals of thirst.
My gynecologist told me as well that drinking water will really help my IC by diluting the concentrated urine. He insists that it’s a vital component in my treatment.

I was afraid that I’d triple the amount of time I spent in the bathroom, but since I go so many times throughout the day anyway, what’s the difference. But when I drink my water, at least, well, I feel like I accomplished something when I feel the urge … and it doesn’t burn nearly as much.

It even seems to help my migraines, so I’m beginning to think they may, in part, come on because I’m not hydrated. Even my fibromyalgia achiness seems to subside a bit on the days when I get the whole jug’s worth down. The jury’s not in on my brain fog though. I still forget what I’m saying as I say it.

Oh, and be careful not to “over-drink” (too much and/or too fast) as you can actually die from “water intoxication.” Man, nothing, absolutely nothing, is without its challenges. So, stick with guidelines from respected sources, such as the Mayo Clinic. You should also talk to your doctor about your particular needs. But even drinking an extra glass a day can make a big difference.

And coffee or caffeinated tea certainly isn’t one of the liquids to drink in place of water. Most patients with IC flare up when they get caffeine. Water, plain or maybe with lemon or lime (if you can handle it).

I’m not saying that water will cure all that ails you, but it certainly has been helpful to me.

So, find the best quality water you can, get one of those plastic bottles so you can see how much you drink in a day, start slow and sip, sip, sip!