"I have never let it stop me"

Meet Lori, our third stitch, who is also my mom's best friend from middle school and struggles with a case of Interstitial Cystitis.

Well, I don't have such an eventful story as you do, but here goes:

 

I first noticed having to go to the bathroom every 15 minutes when I got pregnant 30 years ago.  I asked the Dr. about it, of course he said it would go away when I had the baby.  It didn't.  I still had to go like every 20 minutes.  But I was busy with the baby, and not working, so we didn't have very much money. 

 

Finally, when my son was 2 I saw a Urologist. I remember the tests they did.  An IVP - where they inject dye into your arm - and the dye burns going in, but one nurse massaged my arm to make it hurt less.  It's so funny what you remember. 

 

Then, the other test was really degrading. I remember being in a room with a real lot of medical technicians.  They put a catheter in me and injected something in it and told me to tell them when my bladder felt full.  Well, having a catheter inside you with 12 people watching doesn't exactly make for relaxing peeing conditions. So of course, my bladder felt full right away. So the results of the test were that basically, my bladder is the size of a pea.

 

They had me try Ditropan - I think the standard med for IC.  Naturally I got the dry mouth. And Naturally, it didn't really work. They said that any other med would make me drowsy so I said I didn't want that. 

 

So basically I was left with no hope of relief. I did read that certain foods and drink contributed to it so I cut out caffeine in my soda and immediately saw a difference. I used to go about 3-4 times during sleep at night. Without the caffeine I only go about once.

 

There are definitely foods that make it bad.  When I indulge in those, I pay for it. I call it a "bad bladder day." But I have choices so I just have to try really hard to avoid what make it bad--acidic food like spaghetti sauce, and for some reason certain snacks like Nilla Wafers and Little Debbie snack cakes make it bad. Butter on my toast do too.  I just do the best I can.

 

So for the last 30 years I have spent my life needing to pee.  When I leave the house, I don't go without the FP (final pee). If I wait too long after the FP, then I need to do another FP. Even if I do a FP, the first thing I need to do wherever I go is pee. 

 

The most annoying thing is when I'm out in very crowded situations where there are only out-houses.  I do a lot of city things and that's the only choice.  I've gone in every sort of horrible contraption you can think of. The worst was when I used to go camping. I would go in the middle of the night and sometimes see raccoons--kind of scary.

 

I'm a very active person and I have never let it stop me from doing anything I want to do. I just always know that I will have to go. But I'm so grateful that I don't have the pain that is often associated with IC, I just have the frequency.  I am so very lucky in that respect.

 

I've always wanted to write a book about bathrooms.  I think the nicest one was in Harod's, a fancy department store in London. They don't allow pictures!

-Lori

Thank you so much for sharing your story with me and so many others. I know that it takes a lot of courage to talk about these issues openly, but through more awareness I hope it allow for the topics to be discussed more outwardly.

Meet Morgan...

Among many chronic illnesses, Morgan shares a chronic pelvic pain disorder, know as Endometriosis, that ties us together, creating the second square of the 'quilt' known as 'The Pelvic Pain Heard Around the World,' series.

So without further adieu this is her story and we thank you for sharing her encouraging words with us all. It is stories like this that helps others in similar situations put on a brave face for they know they're not alone in the face of 'Endo.'

"Be Careful What You Wish For"

Over time I have been fortunate to connect with a lot of people who share medical similarities to my own; these "acquaintances" have become my dear friends who share with me the burden of a chronic illness. While they have recounted their stories to me, I have noticed a trend: most of us have a "before" and "after." For some, the "before" is prior to the onset of symptoms, for others the "before" denotes life in anticipation of a diagnosis. Whichever it is, most of us think of life, and our disease, by these terms. "Before I was sick... abc...." or "since diagnosis....xyz." My story is a little different.

I never had the luxury, if you will, of a 'before.' My body has waged a civil war since day one, it just took me a long time to figure out who was fighting. To my knowledge, most wars* fizzle out before long; heck, the united states never fought in a war that lasted two decades, those wise guys. I'm going on twenty-four years and still fighting strong, at least I'm setting some kind of record (sense the sarcasm?). I suppose, however, that I got what I asked for. What on earth does she mean? Who would ask for a debilitating disease? Simmer down and let me explain.

At the sagacious age of ten years, I did a school report on Helen Keller; what a woman, let me tell you! I was so inspired by her life's accomplishments, despite the fact that she was both deaf and blind that I aspired to be just like her when I grew up. Now, I realize there is no self-preserving way to become deaf and blind, but you get the idea. I thought that these obstacles [deafness/blindness] would serve as an incredible challenge in life and what greater way to change the world than to do so with less than others have. I wanted to make a difference, but I saw that to do so, we need a little push. Obviously, at the age of ten, my life was just not challenging enough, go figure, so I hoped that life would push and challenge me in a way that would make me "great," just like Helen Keller. Dear Ten-Year-Old-Morgan, be careful what you wish for.  

I have suffered from a 'bad tummy' my entire life, and I have the record for school tardies and absences to prove it! However, it wasn't until my early teens that my strength was really tested. Let's flash back: It was a warm summer night, I was a fourteen-and-a-half-year-old teeny-bopper wasting her summer days away like any unassuming teen does, without a responsible care in the world. Then, it hit me, hard! My stomach turned in knots, my intestines went into over drive, my lower back ached, my head throbbed, and I could feel my dinner looking for an encore. I was sweating out of every pore of my body. Hours of pain and sickness plagued me. Whoa. Let's never do that again. The next morning I woke up to the beginning of my first menstrual cycle. Misery trumped teenage awkwardness. Were they all going to be like this? Will I feel like I have the flu and food poisoning every time? Of course, these were questions I kept to myself. I was so shy and timid I couldn't possibly talk about my p****d, it was a forbidden and uncomfortable topic. So, naturally, I white knuckled the pain and discomfort until it was over. I was used to an irritable bowel and terrible tummy, so I didn't think otherwise. 

For years my symptoms continued to cycle through and intensify with new ones joining the ring along the way. By the time I reached college, regular class attendance was more of a struggle than ever. Forget about going anywhere the week before and during my period. No way, Jose! There were little ninjas inside my pelvis juggling knives with poor form, while burning coals danced through my intestines. I managed to hide my discomfort well in public until one memorable evening in 2009. While working as a personal trainer, I was instructing a client on proper technique when she said, "Morgan, are you okay? You keep grabbing your stomach, and it has gotten quite swollen over the last thirty minutes." 

Oh no, she can see the sick! There was no more hiding it. She told me I should see a doctor about it, and I finally listened. Shortly thereafter I saw my first gastroenterologist. He seemed to know exactly what was going on with me at every appointment; he would prescribe a new drug and I would have high hopes of a full recovery and dream of a life without pain. However, every time, he was wrong. It was clear that I was a difficult case, and also evident that my doctor was frustrated. I kept reiterating that my symptoms always worsened around my period, a fact which he chose to brush off several times until he couldn't figure out the puzzle and referred me to a gynecologist. 

Reinvigorated by a pair of fresh eyes, I was confident the gynecologist would be able to figure out what was going on. She did the standardized tests for my symptoms: blood work, pelvic ultrasound (super fun), and pelvic exam. "Good news, everything looks normal! You probably just have bad periods and need to stay on an oral contraceptive to calm them. Go back to your gastroenterologist if your symptoms persist, this isn't a GYN issue." I am so over this. I wish I were a man so I didn't have to feel this pain every month! 

After being shooed away from two different specialists, I went on a two week vacation (of which I was sick half the time), and started doing my own research and digging into the science. I stumbled onto a lead I felt was promising: Endometriosis. Could this be it? This sounds like exactly what I experience. I scheduled an appointment with my GYN again, who was not so pleased to see me. "Hi Morgan, last time we saw you we had referred you back to your GI doctor, is everything okay? Are you experiencing any new symptoms?" No, actually, I'm experiencing the same debilitating pain and sickness as before, only worse and more frequently. I did some research on my own, please hear me out, I know patients do this all the time, but I'm confident that I have endometriosis. "Well, all of your test results came back normal, you didn't have any markers for that disease, and the only other way to diagnose it is through an abdominal laparoscopy, which a pretty invasive procedure for an illness I don't think you have." When can we book the surgery? I'd like to get it done before fall quarter starts.

I went under the knife two weeks later, receiving a positive diagnosis for endometriosis. 

After surgery my doctor explained that she removed as many endometriotic lesions, adhesions and scaring as possible; however, there were a few areas she said were "impossible" to remove without risking my death. Seems like a good judgment on her behalf, what you wouldn't know is that if these areas had been left untouched, I would go into kidney failure, experience nerve damage, and my appendix would rupture. These were the "cons" that made the risk of surgery worthwhile. I could sit and wait like a ticking time bomb or jump out of the plane and hip my parachute deploys! Being the adventurous type, I jumped. 

I sought out a specialist in Endometriosis care who I could trust would do everything in their power to treat me; and that is just who I found. Dr. Camran Nezhat and his team at the Center for Minimally Invasive Surgery were deemed the "best" in excision surgery; after all, Dr. Nezhat pioneered the advent of the entire procedure, so I was fairly confident he knew what he was doing. Early in December of 2011 I called his office to inquire about treatment and was scheduled for a surgery 3 weeks later down in Palo Alto, CA (a 14+ hour drive from Seattle, WA). In meeting Dr. Nezhat my worries subsided as his calm and caring nature would put any worry at 

ease. Surgery was a tremendous success! All of the sharp pains and aches I had complained of were taken away, like magic!

Since then, being the devilish disease that it is, more symptoms in different areas, and some, the same, have returned. I will be getting another surgery with Dr. Nezhat later this summer to try and wipe it out again, and hopefully for good. In the mean time, I manage symptoms as holistically as possible; I keep my body fat percentage as low as I can manage, eat a diet that discourages the presence of disease, and manage stress and pain through exercise and relaxation. 

It can be a hard battle, but I just remind myself, "You asked for it! This is your challenge, so be great!" 

Advice for the newly diagnosed: 

1. You are not alone - do not isolate yourself! Reach out to others online via Facebook and forums for Endometriosis, these ladies are the most likely ones to understand how you feel. Be open and honest with your friends, family, and romantic partners so that they can learn and adapt to your lifestyle. If they do not know, how can we expect them to be understanding?

2. Do your due diligence: be your own advocate, do your own research. If you do not understand, even in the simplest of terms, what is going on inside your body, you cannot begin to know how to help yourself. Networking with women who have been and are in your shoes is an easy way to do research if you're not fond of or strong in science, so there's no excuse not do the best you can. Besides, feeling miserable all the time is not really an option, is it?

3. Find a specialist. I do not mean a doctor who lists "endometriosis" as one of their interests on their hospital profile. You need a nationally acclaimed specialist, do not waste your time getting surgery after surgery with doctors who aren't the best. I highly recommend the Center for Endometriosis Care in Atlanta, GA and the Center for Minimally Invasive Surgery in Palo Alto, CA. I have personally been under the care of Dr. Camran Nezhat for a year and a half and his expertise has been life changing. Besides, any physician who visits you in the hospital on Christmas Day two days after your surgery is one you want to have on your speed dial.

4. Cure naturally as much as possible. And by as much as possible, I don't mean "I can't be disciplined to exercise or eat better so I have to take meds and get a hysterectomy." Your well-being is worth any change in lifestyle that is necessary, so do not throw in the towel when it gets tough. Fuel your body with the nutrients it needs, and forgo those that will make your disease worse. Do not let endo win!

5. Avoid medication at all costs. I, personally, have tried SO many medications that I can't list them all off the top of my head. However, I will say this: I have felt way better OFF meds, than I ever did on them [and they were supposed to be helping me]. Most of the medications that "treat" endometriosis are directly affecting the hormone balance in your body, and screwing with the hormones can get messy. Be prepared for side effects your doctors don't always tell you about, and research EVERY drug before you every accept one. Look at the reviews patients have written about them and the potential side effects. If you feel that the pros outweigh the cons, then try the medication, but do so cautiously. Medication should never replace good holistic remedies [adequate sleep, a nutritious diet, plenty of water, an active lifestyle, and daily time set aside for relaxation, etc].

6. Read my [Morgan's] blog. I am a personal trainer and biochemist aspiring to be and MD/PhD. I have more disease than just Endometriosis, which I have blogged about as well. I have a passion for helping others, especially those who have been unfairly plagued by a chronic illness. We can band together and fight these and be stronger than we ever would have without them. So I welcome you to follow my blog [here] and interact with me! I'd love to connect with you. You can email me directly on Facebook or comment on my blog posts.

Thank you all for reading my story! I look forward to hearing yours. 

-Morgan

*Disclaimer: All discussed above should not double as medical advice, thus treatments and medications/supplements should be discussed with your medical doctor.*

Share your story!

Since my last blog was more of a 'novel,' I'll make this one short and sweet. As a chronic illness fighter or what some call a 'spoonie,' I often find inspiration in the stories of others who are fighting similar battles. 

Sometimes reading through these journeys is just enough to get you fired up for another day and motivated because of the words of another sufferers story. I truly believe that it keeps me positive knowing I am not alone and genuinely supported.

With that said I would like to start featuring a story weekly. This will mark the beginning of my "Pelvic Pain heard around the world" project. If you're interested in sharing your story in living with any chronic pelvic pain disorder please feel free to email me at  ICHopeOK@yahoo.com.  Whether you're local or out of state, your story matters, so share away :)

I do ask that the story be kept to no more than 2 pages typed and i'd love if you could include a photo with it! Whatever you'd like to include, including inspiration and also whatever you'd tell a newbie dealing with a similar condition struggling with journey.

Like a quilt, each square, tightly stitched together, is then sewed together, creating a beautiful piece of work, much like our stories; connecting us together as warriors of these conditions.

It’s been awhile: Update

Wow it's certainly been a long time since I've written a blog or logged on here. Unfortunately losing my password and the entire merge of google/blogger can be the blame for that. but thank goodness I finally was able to contact someone to get back in my blogger! But besides that, I feel like I have a lot to share as much as happened since I haven't been without struggle that is for sure, but if you have IC, you probably already know that. This time in my life will likely go down as probably one of the hardest years in my journey with this thing called "IC."

I can't exactly recall the exact day when things started to go downhill, but it seemed as though it simply happened overnight. One moment I was struggling with daily pain and the next it became extremely debilitating. 

At first I thought it was just Stress related as my Grandfather's death brought with it countless hearings to attend from summer of 2012 to the beginning of 2013, but I was wrong.

In late Spring of 2012, I decided to get a second opinion from a well recommended Urologist, Dr. Parkhurst. I had my first consultation with him and found him to extremely thorough, which is always good with a specialist. I just wanted to get another specialist’s opinion on my case, despite already having a wonderful urogynecologist that I’d been seeing since May 2008.

So with my first appointment came a variety of tests, bloodwork, CT’s and some medication changes along with a scheduled cystoscopy under anesthesia. The cystoscopy revealed what I already knew; I had interstitial cystitis and my bladder was extremely vascular with quite a bit of inflammation.

The dr gave me a few options to try, and since I'd already tried many of the medications offered, it left me with pretty much nothing except surgical treatments like the pudental nerve implant and continuing a regimen of intense physical therapy with a specialist.

After my stint with Medtronic interstims back in 2009, I decided against any sort of foreign object in my body simply because I figured I'd already been down that road.

And the more I thought about returning back to PT, the more it became difficult to get out of bed. Yes I was tired, I felt lazy, but not because of just anything; I was physically and emotionally drained from chronic pain. But it had become more than just chronic pain, it became a job just to move.

So I made a conscious decision to take a break from treating my IC on its own and treat the entire 'picture' in terms of my immune system. I started a newly released infusion drug for my Lupus in early May of 2012. It was a drug that worked much like chemotherapy targeting the B cells in my body in hopes of reverting my body's immune system from attacking itself, but sadly after about 8 rounds I was done with it. I began to feel much sicker on the drug than without it, not to mention the increased urinary tract infections.

Honestly it felt like one nightmare after another, because during this time I was also sent to a GI specialist due to abnormally high liver enzymes, which was attributed from the use of numerous years on methotrexate (chemotherapy drug). The specialist ordered a liver biopsy and sure enough I had liver damage. But I honestly wasn't concerned about that because the procedure itself was much more traumatizing than I thought.

Meanwhile, my bladder was growing increasingly ‘angrier.’ Symptoms i'd never dealt with before began to appear and before I knew it, I went to having to self from once or twice weekly to anywhere between 12-15 times a day. I also developed an intense lower backache that never went away and quickly made walking difficult along with the deep gnawing pain in my pelvic region.

I was completely and utterly exhausted from the pain that just did not seem to be controlled by any of the medications I was on. It’s one thing to have an “off day” or “off week”, but this was nothing of the sorts. Every single thing about these intense, painful symptoms was off.

Before I knew it, I wasn’t able to barely get out of bed, this debilitating pain had taken over my life. And honestly it wasn’t something I talked about or wanted to admit to anyone. It’s really difficult to be open about your lifestyle when something you have a chronic debilitating condition affecting your bladder.

It is so easy to be misunderstood and your pain to be overlooked, because realistically “you look perfectly fine on the outside, it is only your insides that proves you’re “on fire.” And honestly, until you’ve been there, you can’t really understand it. There were many times I wanted to go out, spend time with my family, take my sister out for ice cream or to the gym, but more importantly I wanted to attend support group meetings where I figured people understood me the most and my struggle.

Being in my twenties in this shape wasn’t what I imagined, but then again this pain wasn’t new to me. I just had hoped within the last 6 years, somewhere along the line I’d find some quality of life.

And I can honestly admit that these were some of my darkest months, from around late July 2012 to May of this year. A time I needed support the most and yet, I chose not to reach out. I was depressed, in pain and now completely isolated, despite having the support of my loved ones just beyond my four walls.

And in the beginning of this year I did find out one of the main reasons as to why my Interstitial Cystitis had suddenly become so much worse than it was before. After a long gap between my Botox treatments into my bladder and pelvic floor, I decided to give it another try in late January. It was during the surgery that my urogynecologist discovered some ‘odd’ looking lesions on my bladder wall, which he would biopsy and find that I had hunners ulcers.

This wasn’t what I was expecting to hear, but it did answer some of the many unanswered questions i'd had as to ‘why’ I'd had been having increased amounts of pain. Besides that, the Botox surgery wasn’t making a dent in the symptoms. So once again, I was back at square one, but like I’d done in the past, I began to research treatment options on how to treat those with this type of “IC.” 

I remembered in the past, hearing about the two types of IC, but always was told that I had the ‘classic’ IC with the glomerulations or pinpoint bleeding. And now here I was having to learn all over again how to cope with the disease that had ‘two faces,' not to mention being in the very small percentages of those with this type of IC. The ICA further confirmed by fears as it reported that "[a]bout 5% of IC have persistent symptoms for more than 2 years and 5% have end stage disease defined as very hard bladders with low capacity and terrible pain. [Finding that] [m]any of these patients have hunners ulcers.

It didn’t take me long to find one option that I felt would at least me give a chance at some relief.I discovered One night while looking over some literature online, I found a site for for a New York Urology group discussing various treatments for hunners ulcers. It was a treatment known as 'fulgaration' or nerve ablation, which involved lasering the hunner lesions off the bladder wall so that the inflamed tissue would be removed.

And so armed with this information, I took it to my specialist to discuss if it could be done while I was at my post-op. Because it being a specialized procedure my doctor felt it would be better if I was to a specialist with more experience of in dealing with the fragile bladder wall. 

So in late April, I made the appointment to see the specialist where I discussed the 'fulgaration' surgery and also heard another doctor's opinion on my case. He explained that i'd pretty much done there was left to do besides drastic surgeries that required resectioning my bladder or completely removing it IF this laser surgery did not help. But this was one option I completely wanted to avoid at all costs...

With this new information, I was both scared and desperate for this surgery to help because with my odds, a treatment actually doing what it's intended to do was slim in my case because in the past everything seemed to just help for such a short period or be a total 'flop.'

I had tried many of the holistic diets, supplements and natural approaches, even going as far as weekly acupuncture sessions, but each one of my specialists told me to approach them with caution simply because nothing comes without risks even in the 'natural' side of medicine. Heck who knew taking supplements with your daily medications could be counter-productive to your health if you aren't careful?!

So I reached out in prayer; I asked that God would give this doctor the power and knowledge he needed to aid in giving me a better quality of life. Everyone has their own intimate relationship I wasn't going to go into the surgery with false expectations or the idea that he was going to 'cure' me. I just knew that I needed this to help...

And coincidentally enough I would get a call from my urogynecologist himself telling me that he'd recently gone to a conference with Harvard physicians and the subject of treating hunners ulcers by the use of laser was touched upon because it was found to be helpful for some patients with these debilitating lesions. Therefore, he told me he'd be willing to try doing the surgery, but since I already saw the other specialist he sent me to, he told me that he would let him do the surgery first and see how well my body responded before he'd make the decision to continue them himself.

The surgery was scheduled for May 20 at St. Anthony's Hospital. I was hoping that I could make it until then, but the pain continue to grow increasingly stronger by the day. And before I knew it I was calling my Dr.in the wee hours of the morning on May 12 in tears from the bathroom floor because I didn't know what to do. I had exhausted all the tricks in the bag that I knew of and nothing was touching the pain, not to mention I could no longer self-cath myself because I was in such a flare that it was nearly impossible.

 It isn't often that I want some sort of hospital intervention as I prefer to deal with things on my own because we all know that living with a chronic illness, learning to handle desperate situations is something we learn to deal with, but this time was different.


So in the early morning hours, I was admitted to OU Medical Center where my pain was treated with the use of a 'PCA' or pain pump and essentially could find some relief until my upcoming laser surgery took place.

I am so grateful that I have such a great team of doctors who truly care about their patients health and wellbeing. I believe that a knowledgable doctor is a must when you deal with a complicated condition, but also having a compassionate bedside manner is also a plus when times get rough. And going above and beyond what most doctors do gives me the strength to keep my positive attitude up despite the situation I was in.

And so my doctors and I worked towards getting my pain levels down feeling so I could go back home to my own comfy bed. 

I would be in the hospital for about 4 days. As much as I hated being there, I am happy to say I received great care. There was no way that I could have got through those days without the aid of my doctors.

And all the while, the amazing support system that I have is what kept me going through this difficult time. My parent's have been supportive since I first got sick and I thank my lucky stars for them daily. Even in their retirement years, their kids are never far from heart and they visited me daily.

It made me truly realize who I could count on during such trying times.

Finally May 20 (yes the day of the deadly tornado) rolled around, the day I had been anticipating for years it seemed. I was nervous, but anxiously ready to feel better. 

After the surgery, I was discharged about 1:30pm from the hospital where the procedure was done at only to be admitted back at OU Medical Center later that night by my urogyn for pain control and to recover from the surgery itself.

In between this time, my family and I would find ourselves in a scary situation as the deadly tornado that would later devastate our town headed into my area. Just as we pulled into the garage, we only had about 5 minutes to gather up our dogs and seek shelter before the F5 crossed the I-44. My dad and sister would go in our above ground store shelter, while I refused because I was in too much pain to stand. I was not really thinking as I was still in my 'anesthesia' fog so I chose to grab my mini dachshund, rosary and curled up on the floor of my mom's walk in closet. And of course, my mom didn't want to leave me alone, so she just laid down next to me and we prayed. I can still hear that sound as the lights flickered and the power went out.It sounded like a freight train and I kept bracing myself for something, but just as it came, it was gone. The sun was shining outside and we were all fine, and our house was spared, while many others were not so lucky. I thank God that he was there with us that day.

Focusing back on my recovery, I would have another 4 day stay in the hospital, but in my eyes it was all worth because it helped me see relief in time.

But quickly I start to see improvements a few days after in terms of my bladder pain and that deep gnawing feeling in my pelvis. I also for the first time in almost a year and a half could void on my own. With just this, I felt like I had made the right decision and knew that things would only get better. 

I've realized that nothing happens overnight and that I just need to be patient with myself. It's just another reason to never give up and to advocate for yourself because when you are involved in your healthcare, it makes all the difference. 

A huge thank you to everyone who helped me get this far and helped me through this rough 'patch.'