Chronic Pelvic Pain and IBS

My name is Laken and I decided to join because of the post previously about Chronic Pelvic Pain. I am 20 years old and have been having tons of issues for almost 2 years now with my stomach and bladder.

It all started in February 2011 about a month after my second case of Salmonella within 3 years. I have always had problems with having UTI's or feeling like I have a UTI. I have also always had trouble with constipation (going MAYBE once a month). I have been back and forth to doctors and specialists and no one can help me. I feel like I am all alone in this. The pain gets so bad that I cannot breathe or move, but then have to force myself to do so to have a somewhat normal life. I work a full time job and was going to college full time as well, but everything got so bad i had to "take some time off" from school because I cannot afford not to work. I have had intestinal scopes, MRI's, CT Scans, Colonoscopy, Urodynamics, physical therapy with a Uro/Gynecologist and every blood test you can imagine and still nothing. They have finally come up with IBS and Chronic Pelvic Pain/Pelvic Floor Dysfunction, but they are not helping me any. When the pain first started to where it was unbearable my family doctor put me on Hydrocodone 5/500. He referred me to a GI doctor and he put me on Neurontin (300 mg- 3 times a day and 2 at bedtime), Bentyl, and the maximum dosage of Miralax everyday along with a laxative daily. The Hydrocodone with the bentyl helped at first with the pain but not for long. All of the Neurontin he had me taking made me feel like a zombie so I had to play with the dosing and all of it stopped working after about 6 months. The laxatives and Miralax did absolutely nothing for me and they tried giving me a strong prescription laxative to make me go, which surprise, did nothing either.

After that, my family doctor referred me to a Urogynecologist and they did all of the standard tests and all of the tests for Interstitial Cystitis and came up with Pelvic Flood Dysfunction. They immediately handed me off to a physical therapist and I followed it religiously. It did not help a bit. At this point I was fed up, here I am 19 years old at the time and cannot do ANY of the things a 19 year old should be doing. Or things that someone with a FIANCE she has been with for 4 years should be doing.

I stopped going to physical therapy the week after she told me I was "better" and did not need to see her anymore. In July I made my way to UVA hospital because they have one of the best Urology/GI teams around Virginia. I saw the Urologist first. He did some tests and said that it was chronic pelvic pain and that i was on everything i could be to help it, so to stay on them. Two days later, I saw the GI doctor. The GI doctor decided to take me off all of my medicines I had been on for over a year because my constipation was the cause of all of my problems. Well, here I am now. I have been off all of the medications since August 10th and I am more constipated than ever and I do not know what to do from here. I need something that works.

The pain is always there, but EVERYDAY is a guessing game for WHEN the pain will become "chronic" for a lack of a better word. I understand that no medication or therapy is going to make me feel 100% better, but if anyone has any suggestions for me I would greatly appreciate your time and input!

<3 Laken <3

Hello Laken and welcome to the forum. I am sorry that you are having to deal with so much at such a young age. it just does not seem fair. I can only tell you not to give up on finding a dr that is willing to listen to you and try to help you. I have heard of people getting Botox injections for pelvic pain with mixed reactions on whether it worked or not. Everyone is so different so there really is no way of knowing if it will help until you try it. I would make sure my insurance would cover Botox because its pretty costly.

Another thought would see about getting seen at a teaching hospital if you have one close to where you live. They have helped many people in your situation. If you will look in CP101 here at the forum there is a list of teaching hospitals and hopefully there is one close to where you live.

Take care.....Susie

I am sorry to hear that you are in the hospital! It may be the best place for you right now tho so the doctors can monitor everything and stay on top of it. Hopefully they will figure it out soon and get you out of there with more knowledge of what it is and what to do to help it. When mine started, the problem was upper abdominal pain. They originally thought it was my gallbladder, it wasn't, but the pain moved. It started up under my right rib to the center of my abdomen in between my ribs and the pain was really severe, but then it moved to the left side midway down my stomach. The pain was still in both areas, but the severity of them would alternate. Please keep me updated on how you are doing and if you need someone to talk to I am here for you, I know how scary the diagnostic tests can be, and how scary it is having them negotiate what they think it could be and not knowing for sure. I will be thinking of you, good luck and stay positive. It can only get better from here!

That pill should defiantly clear up any confusion about where the pain is coming from! Hopefully you'll finally get some answers from this test! Has your pancreas been checked? That's the problem dealing with right now but the pain is generally in the middle of my abdomen up high & radiates into my ribs and back.

Today I'm having another procedure done. This time they are going in to repair my bile ducts of my pancreas, praying that this will reduce the pain. Ugh, fingers crossed!

Good luck with your upcoming testing, don't let the doctors just push you away. You have to fight and not let them treat you as if your problem is minor. You are worried and it seems as though it is affecting your quality of life! Let them know that..
~Kayla

Laken24,

P.S.  My ileostomy was not caused from my pelvic floor dysfunction but from my bowel disease.

Serenity537