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

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!

For those of us who suffer from cronic pelvic pain, our lives are hard. I find that usually the last person to take care of themselves in the home are the moms (women.) Since starting the program with Dr. E I have learned alot.

First, I am not alone in the suffering of chronic pelvic pain. Second, I have learned that I have to take time to heal myself. This is hard to do when so many people are looking for my time. I have had to take the time. I felt guilty at first, but as I got better I noticed that my life is getting better.

Not taking the time can make the healing process go slower. I never thought the pain would go away. I was amazed when it did. I am no longer running for the bathroom every hour. I have almost no pain durring sex, I have even been able to orgasm during sex. This has never happened before!

I am happy and feel like a huge weight has been lifted. I have had two flare-ups and have had to slow and see where I was lax in my regimen and go back and fix it. It also helps to have a good partner in all this. My husband has been so patient. I hope this writing gets someone to go out and find help. I hope this will make someone take the time to heal and make some time for yourself.

If you want your life to get better and pain to become manageable, you have to stop feeling guilty. Your life will get better and you will be amazed with the results. Have faith in yourself and remember you owe it to yourself to feel better. Happy Thoughts.

Recently, we came across Lisa Martin’s blog post “I Heart Dr. Brookoff.” Dr. Brookoff is an Oncologist and a dedicated and passionate advocate for patients suffering with Interstitial Cystitis. You can read a PDF article from the IC-Network about a talk Dr. Brookoff gave in 1997. His dead-on analysis and understanding of pelvic pain will hopefully finally be heard by the medical community today. Lisa also provided this link to a PDF file of an interview with Dr. Brookoff in 2006.

I’ve really had yet more proof that I can’t just sit back and expect to feel better. Especially when things are going better, I think I can just sit back and stop doing what works to help my symptoms. I think I still have trouble accepting that, for me, this is a chronic condition, not a temporary illness.

I have many of the conditions that lead to pelvic and sexual pain, including irritable bowel syndrome, also called IBS, interstitial cystitis, also called IC, vulvodynia, vestibulitis, just to name a few. In addition, I have fibromyalgia, which also seems to have a connection, and certainly doesn’t help. I am also a food addict/compulsive overeater in recovery for today and lost 55 pounds about nine years ago.

While everyone has their own personal “protocol” that will help them (yes, you can find some relief), I am using some medications, including Lidocaine^TM topically and Elmiron^TM (plus magnesium to help with the IBS), I personally have found diet really affects the burning, raw feeling I experience.

As a food addict, I cannot eat flour, sugar, even artificial sweeteners (for many reasons), at all. But, even within the guidelines of what I can eat, many of the healthiest foods trigger severe symptoms for me, in as short a time as a few hours. Among these foods are brown rice (I use Jasmine, which is still a whole grain), nuts & seeds, carrots & green beans. Unfortunately, sometimes I am less vigilant about both the food and using the Lidocaine.

I had been able to have intercourse for a while, with little discomfort, which I counted as a miracle and blessing. My husband and I have accomodated our sex life for my condition, but the ability to have intercourse is something we both want.

However, I stopped using the Lidocaine and began eating the trigger foods. I have been overworking until all hours of the night.

So, the next time we attempted intercourse, I felt as if a hot poker with sharp knives coming out of it ripped through me. To say the least, it didn’t feel good.

Feeling demoralized and angry at myself, I walked around bow-legged for the rest of the day. I have only been on the Elmiron for a few months, so am not quite sure yet how much it helps, but my IC symptoms do appear to be less severe.

The bottom line is that there is help for me, but I must take an active part in my recovery and be consistent if I want to feel better. I don’t know that I’ll ever be cured, but I surely know from the positive experience I have had that I can have a better quality of intimacy if I do what I know works for me.

I would like to hear your comments and hope you will share your story as well.