Sept 2017

Inam scheduled for a Hysterectomy Oct 24,2017. Both my Mother and Sister have had a Hysterectomy. Both had tumors and fibroids. My Moms tumor was somehow undetectable until they opened her up. She had been complaint about severe pelvic pain and pain from sex for many years. They found a very large tumor attached to her Cervix. My hopes from this surgery are to no longer have the pain that occurs during ovulation and my menstrual cycle. Even though I had ablation in 2013 to stop 6 weeks of bleeding , I still have a light period. Although it is light, it still causes horrendous pain and sends my IC into the flare from hell. They plan on leaving my ovaries as long as they are Endometriosis free. That's another challenge. Now they say i have Endometriosis. Like all of you, I just want to feel better. The constant burning I endure is really just a part of my daily life. 

I've also started Pelvic Floor Therapy, and I love it. I've learned that I carry all of my stress in my pelvic region. Im learning stretches to help lengthen the muscles. I highly recommend PFT !!! 

I've started adding Calendula to my water and it seems to be helping soothe the bladder. Calendula has often been used to treat burns, and since my bladder and Vagina feel like they are on fire, I thought about adding to my water to send it to my bladder. 

5/23/17 

          This blog will detail my journey with Interstitial Cystitis and how I am beating it using natural supplements. After being on Pharmaceuticals, which made my symptoms even worse, I decided to go off of them cold turkey. I researched for hours on end to find the perfect " cocktail" using natural medicine. Please note that what worked for me isn't going to work for everyone. I would also suggest speaking to your Physician before deciding to go off of your prescriptions. Quitting cold turkey like I did  probably wasn't a good idea, but in the long run I feel so much better. 

2013

       Turning forty wasn't that bad. I was in really great shape, and it was the first year that I wasn't trying to reach my goal weight, as I was already there. As a recovering Anorexic, I'm usually frantic about reaching  a certain weight before my birthday. I was actually pretty happy with myself for once in my life. I also suffer from " body dismorphia" , so I was pretty proud of myself that I didn't think I had any self- improving to do. 

       I had my first mammogram when I turned forty. Breast Cancer runs in my family and my Mom had been pressing for years for me to get a mammogram. I was really nervous. I had always heard that mammograms were painful. I was also worried because I had had breast augmentation. I didn't want my " girls" to pop. I'm happy to tell you that mammograms are a piece of cake. It didn't hurt, and my " girls" didn't pop! #checkyourboobies

       I remember the exact moment when I first felt the pain. I was cooking dinner on the stove when I felt horrible pain and pressure " down there" . It felt like something pushed down on my cervix and was trying to come out. The pain was also in my inner thighs. It was very intense pain, something I had never felt before. It lasted about five to ten minutes and then it was gone. 

       I finished cooking dinner, and had to use the restroom. There was blood when I wiped, so I figured I was just starting my period. I didn't think anything of it, and continued with my night. 

 

       I was bleeding a lot heavier this period, I had always had light, three day periods. After five days of bleeding I was a little concerned. I went to see my Nurse Practitioner who said I could be having early signs of menopause and she sent me home. By this time the bleeding was getting heavier. I was starting to have pain in my lower pelvic area , and the blood was now a constant steady flow. 

       I called my NP, and she said to go to the ER. They did an ultrasound at the ER, and they found nothing. I then made an appointment with my Gynocologist. She took a culture and sent me to have an Ultrasound of my Uterus. Later that week she called and said everything was fine. The bleeding continued, and by now I was on week four of bleeding, along with pelvic pain. I decided to get a second opinion, and saw another Gyno  from the same Doctors office. He prescribed me a pill to stop the bleeding which didn't work. A week later I was back at the Doctors. We decided I would have Uterine Ablation to stop the bleeding. 

       The ablation seemed to work. The bleeding had stopped and I recovered well. The next two and a half years were followed by many UTI's. Along with the UTI's , it felt like my Vagina was on fire. It literally felt like there was a hot poker stick up there. My Marriage started to deteriorate due to the fact that I never wanted sex. I just thought it was all because of Menopause, but honestly, who wants anything up there when you are on fire? Not this girl! #firecrotch

 

2015

       By now the hot burning poker stick from hell was pretty much a constant thing. I couldn't take it anymore and went to see my NP. Once again, a UTI, high white blood cell count. I was put on an antibiotic , Cipro, which was pretty much the only one that would work at this point. I was fine for a couple weeks, and then the urgency and burning was back full force. I went back to the Dr and again, had a high white blood cell count. Once again, he chalked it up to being Menopause. Early menopause does run in my family, so I agreed and went home. 

       I guess I just got used to the burning. It was like that nagging bee that just won't leave you alone. You learn to live with it. I read up on Menopause , and learned about Vaginal Atrophy. Vaginal Atrophy happens when the vaginal wall thins during menopause. It can cause a burning sensation. Once again I was convinced it was just menopause. I did my normal daily routine, and kicked up my workouts because they made the pain go away.

       I couldn't help but think I had something else wrong with me. The pain wasn't coming from my uterus, or my stomach. It was directly where my bladder was. Sometimes I would get really bloated and I could feel a bubble sensation in my bladder. Other times it felt like there were little rocks in my bladder. I decided to go back to the Dr. I told him all my symptoms and he kinda looked at me like I was crazy. Hell, I was starting to think I was crazy. He prescribed me Vesicare and off I went. The Vesicare did nothing. I was back in the Dr's office the next week. My plan was to go every week until somebody did something for me. 

       I go to a walk in medical facility, so on this particular day my regular Doctor was not there. I was going to see a new Dr, a Woman this time. I decided I was going to be very detailed with this Dr hoping maybe, just maybe she would be able to help me. We do have the same girl parts. I asked her several questions , such as could it be from using " toys" in the bedroom, or maybe hurt from something new my Husband and I had tried. 

       She laughed , and said no. She asked me if I wanted her to do a Vaginal exam, and I couldn't get my clothes off fast enough. I have never been that excited to have a vaginal exam. She took a culture , and we discussed putting me on a hormone creme called Estrace which is supposed to help with Vaginal Atrophy. Ughhh, back to the whole Menopause game. 

       First of all, it is not fun putting a creme up your " hoo ha". It feels like when you were a kid and your mom shoved Vicks up your nose. The Estrace made me cramp a lot, but I kept using it hoping for a miracle. Three days later my nurse called and said the culture results showed I had a slight yeast infection. My first thought was " of course I do, I've been on a zillion antibiotics." I was told to stop using the Estrace, that the pain was just from the yeast infection , and to go back on antibiotics. 

       First of all, sorry if this is tmi, but I had no vaginal discharge. I had been having this pain for two years now, how the heck could it be from a yeast infection? Of course I googled yeast infections. #gross

       Knowing that I didn't have a yeast infection, I still took my antibiotics. When I finished, and the pain was still there, I went back to the Dr. I was averaging a trip every two weeks. I was beyond frustrated. My regular  Dr was there and I must of looked pretty bad because he actually looked concerned this time. He referred me to a Urologist, and said I needed a Cystocopy.I went home and waited for the phone call.

     When the call finally came, I was beyond excited. I just knew they would be able to help me. I was in full flare by now, blood when I wiped. It hurt to sit down, it hurt to lay down, it even hurt to stand. I practically lived in the bath tub. The Soonest they could get me in was the following month. I was happy and sad all at once. Once again I felt defeated. I drank gallons and gallons of cranberry juice hoping it would help. It's funny how they tell you to drink cranberry juice for your bladder. It's actually not a good thing to drink if you have IC, I was just making my flares worse. 

       The day of my appointment I was so excited. It was like Christmas. I went in , filled out my paperwork, and waited. As I said before, when you are in a flare it hurts to sit. I sat in that waiting room holding my pee for an hour and a half. I was in agony, but still excited to get my Cystoscopy. I practically peed myself when they called me back. I gave my urine sample, and a little more, and went to the exam room. I sat there by myself for at least another 30 minutes staring at the cystoscope. That thing is huge! I was getting very nervous now with that thing staring me in the face. 

       The nurse finally came in and said I was in the wrong room. She moved me to another room where I waited a good 20 minutes more. Finally the Dr came in and said we would not be doing the Cystoscopy today, but instead a Vaginal exam. I cussed him out in my head. Again, felt totally defeated. He said he needed to rule out any uterine problems. Everything checked out fine, like I knew it would. I was given my next appointment, another month, and my pre-op instructions. 

        I broke down in the car crying and called my husband. I just wanted to feel better. Why wouldn't anyone help me? 

       My pain was really bad at this point. I ate Pyridium like it was candy. It was the only thing that remotely helped. I read the pre-op papers over and over and researched about the Cystocopy procedure. I googled anything that had to do with the bladder. I bought some herbs that were supposed to help, praying for another miracle. One of my clients recommended that I try a powder called Clear Tract. Of course I immediately ordered it. Clear Tract is 100% d-mannose in powder form. You put a scoop in your water and drink it of course. It had no flavor whatsoever, and it seemed to calm my flare. The hot poker stick from hell was still there, but not burning so hot anymore. 

       My appointment day came, and my husband went with me this time. Once again we waited about an hour in the waiting room, before being called in for my urine sample. 

              We waited in the exam room another 20 minutes, when the nurse came in. She asked me if I was currently being treated for a UTI. I looked at her like "duhhh."She asked if I was taking Pyridium, and I said yes. Ten minutes later the Dr came in and said he couldn't do the Cystoscopy because I had too many things in my urine. I teared up and looked at my husband. I had followed the pre-op papers, made sure I hadn't taken any medication that were listed. I was obviously upset, almost crying. I told him Pyridium and clear tract were not on my " do not take" list. He said we'd have to reschedule. Not only was I upset , but my husband was too at this point.

       We walked back up to reception to schedule my appointment. While the receptionist was trying to find an appointment my husband and I discussed just going somewhere else. I told the receptionist to go ahead and schedule my appointment, but I may just find someone else. Once again, another month in pain.

              I immediately started looking for another Urologist, like literally while we were driving home. I found one that a client of mine was seeing and called to schedule an appointment, but I needed a referral. Ughhh, that meant back to my regular Dr. 

       I waited another two weeks for the new Urologist to call back. When he did call, we did a brief over the phone consult, He informed me that he didn't treat bladder pain like I was having, but rather just bladder incontinence.

       I decided to go ahead and keep the appointment with the first Uro, and go ahead and get the Cystoscopy. I made sure I had absolutely no meds in my system so we wouldn't have any reason not to do the Cystoscopy. This meant no Pyridium, which I was basically living on. Needless to say, it was a long two weeks. To be continued.................

       

               The next two weeks were miserable. I took no medication whatsoever. I was in horrible pain. It hurt to sit, it hurt to stand. I just wanted it to go away. The burning was comparable to a hot poker stick touching my cervix. My bladder was spasming  so bad that it felt like a heavy rock , like the muscles were all " balled" up. 

               I called to confirm my appointment for the following week. There was no way I was letting them out of it this time. We confirmed , and I felt such great relief. 

           Finally, the day had come! I was going to get my Cystoscopy. I was going to find out what was wrong with me . YES! 

               I signed in at the front desk and waited. I knew the wait would be long . This was my third visit here and the wait had always been up to an hour. I paid my co-pay and sat down. My name was called and I was told to go give a urine sample , which I did. I made sure this time to wipe extra well down there so no germs whatsoever could interfere with the results. I went back to the waiting room, and waited. My name was called again, And I followed the nurse down the hall, but this time was different. We passed all of the examination rooms and entered what seemed to be an office. I was told to wait. I was confused. Scared. I thought they had found something bad in my urine. The nurse came back and closed the door behind her. I was then told that the Dr was not going to do my Cystoscopy because of the way I overacted at the last visit. OVEREACTED? Obviously they don't know me because THAT was not overreacting. That was pure defeat. I was in shock. She said you may please leave now. I stood up, looked at her in shock and walked back down the hall. 

            I had so many questions. Why would they have me pay my co-pay, give a urine sample , and then call me back just to tell me they were letting me go as a patient? I broke down in tears in the car. I called my Husband sobbing. I was ready to end it all right there. There was no way I could live with this pain anymore. It took all I had to keep my Husband from driving to the Doctors office. Needless to say, he was furious. I cried the whole way home. I was back where I started. I immediately went online the second I got home. I filed a complaint against the Doctor . I posted it on the medical board and the Better Business Bureau .  I then received an email from the BBB. It stated that if the Doctor felt I was making false accusations, they would not be able to post the complaint. Well guess what. It was posted, and is still on there!

         The next day I was back at my PCP.  I had found a Urologist here in town that had great recommendations. My PCP sent over a referral and it was accepted. I wasn't excited this time though. I felt like nobody was taking me seriously. I felt like they all thought this was all in my head. I was starting to think this was all in my head. I had another month to wait, so I went back on my Pyridium . #thankgodforpyridium🙏

            

7/17/17

Today I was helping my Husband move a solid oak Captains bed out of my sons room. ( my 21 year old son just how his first apartment). I was barefoot, and the bed was upright when it landed on my big toe. I jumped like a Mexican jumping bean, sound coming out of me that I didn't know ere possible, and .... I peed my pants. My 11 year old was laughing hysterically while I was bent silently holding in my pain. She was laughing so much that I finally yelled shut up to her. I walked down to my bedroom and changed myself. I felt so defeated right there at that moment. " Look who you've become", I thought. Here I was, a 45 year old Woman who pees her pants , has a major yeast infection, has a prolapsed uterus and needs a hysterectomy, and has IC . Pathetic ! I entered the living room almost in tears. I felt very low right at that moment.......

Patty Schulke, thank you for that phone call today! I needed it. It reminded me that I am not alone. WE ARE NOT ALONE. Man or Woman, we all have one thing in common. We suffer daily . We hurt daily. Some days we feel like we can't go on. We all need support. We all need each other .... For that, I am thankful ❤️