MCTD Support Group

Mixed connective tissue disease (MCTD) or Sharp's syndrome is a human autoimmune disease in which the immune system attacks the body. MCTD combines features of polymyositis, systemic lupus erythematosus, and systemic scleroderma and is thus considered an overlap syndrome. MCTD commonly causes joint pain/swelling, Raynaud phenomenon, muscle inflammation, and scarring of...

614 Members
1,869 Posts
0 Online
Allergies & Immunity
/ MCTD Support Group

Cystitis

MToennis
MToennis
Well, you can get inflammation anywhere and the bladder is no exception. I finally got into see a urologist after waiting 3 months for an appointment. I have been miserable and the family practitioner was at the end of his rope in trying to deal with me. The pain has been pretty bad at times.and I am really tired of dealing with it. About a month ago, I woke up in the middle of the night with bladder pain, went to the bathroom and had a toilet full of red blood and clots. I just took a Tylenol, drank a glass of water and went back to bed. (This recently happened to a friends father. He went to the ER and was admitted. It never occurred to me to do that! LOL) Next day, I begged an appointment and saw the PA who gave me some Augmentin that made me sick. Anyway, the culture came back negative, so I stopped the antibiotic as ordered and got sicker. Finally I called the Family Dr and he gave me another antibiotic for 4 days only which helped but wasnt enough. Meanwhile the culture showed a raging infection. I called and got 4 more days with some relief.

So I dealt with this for another couple of weeks. I get up every 2 hours to try to pee. My urethra feels like I have needles poking me. I am so tired and sleepy. No energy. Heart is skipping like crazy and cant get in to see the heart specialist but that is another story!

Yesterday, I had a 3 hour appointment. I gave her my history, she looked at my records from the family Dr, my previous urologist, the hospital and she did a cystoscopy in the office. She said my bladder was extremely inflammed and my urethra was swollen and red. Did not see any ulcers but did see scars from ulcers and a biopsy I had. So, she sent me for a CT. After that, she told me my urethra was twisted and pulled to one side. She is starting me on 6 months of antibiotics. She gave me a diet to follow. The worst is no caffeine at all! How will I get through a day!!?

In 2007 I had a bladder lift done. After 4 pregnancies, one with twins, a couple of uterine surgeries, I needed it. But it made all my problems worse. After, I told the urologist it felt like my urethra was pulled to one side and he got mad telling me it was impossible. I never went back and have dealt with this for 9 years. It was killing me but now I have hope of getting better. The Dr gave me so many options starting with meds and diet, and going through so many other options before surgery.

I sure hope this works, but at least I have hope.
Mary Ann
MToennis
MToennis
Got a call from the urologist yesterday. Seems I have a drug resistant infection. So, I went to the office and got 2 shots of gentamycin. I went back today and got 2 more and have to go back tomorrow for 2 more and some blood tests and then maybe friday depending upon the test for 2 more shots. I am also on macrobid, 2 a day for 10 days and then once a day for 6 months. As well as probiotics, cranberry pills and cystex. If this doesnt kill it, I dont know what will!
My butt is sore and I think I am getting thrush! LORDY, LORDY!
Mary Ann
stephenheminger
stephenheminger
my opinion is if a doctor ever shows anger or you even get a hint that she/he doesn't believe you, just get up and walk out the door. demand your money back first. your just wasting your time and money. if your doctor doesn't believe you she/he can't help you, but he sure doesn't want to stop taking your money.

I wasted years and an incredible amount of money on a neurologist who didn't believe me. years of suffering without getting help. i hate that man for what he did to me. I was so frustrated the last time I left his office that I cried. and i couldn't even remember the last time i cried. the pain on top of the frustration didn't help either. i just couldn't believe that he didn't believe me all that time but kept rescheduling appointments. and making tiny adjustments to my med and telling me i would have to wait 3 months for it to take full effect. It was getting so hard to do my job and i didn't know what was wrong with me.
MToennis
MToennis
Yeah! I never went back to that urologist but am madder than he was at this point! If he had done the surgery right in the first place or at least acknowledged he could have had a problem with it, I would not be in the fix I am now! I could have gotten it fixed and not have to put up with this.
My family Dr has really been great, but admits this was over his head. I really wish I had found another urologist before this, but where I am is where I am!
Mary Ann
alwezonmymind3
alwezonmymind3
Mary Ann, I have chronic bladder issues too--cystitis, UTIs, etc. and know how miserable they can make you! Sometimes I have to take Valium to get some sleep.

Hope you're feeling better soon, and good luck with quitting coffee. That's a tough one.
Catalyzt
Catalyzt
I totally understand going back to sleep when the toilet is full of blood, I've done that once.

It's like, hey, I have no blood left, it's all in the toilet bowl, of course I'm sleepy. And I'm also thinking I won't be sleeping in urgent care the next day, better get rest while I can, and if it turns into a dirt nap, hey...

I am so glad this isn't bladder cancer or something. And so sorry you have to go through this. Thinking positive thoughts, keep us posted.

It's good for me to be reminded of this. I'm not the kind of therapist who runs up the bill if the client isn't getting better, or isn't getting SOMEthing out of the therapy.

But if a doctor doesn't know what's going on, they should say so-- and refer.
cap1972
cap1972
I'm so thankful for this board. I was just doing online research this week on reoccurring UTI infections...and when I do sit ups recently now, I pee my pants! Can't treadmill cause my aching feet, now can't do sit ups for peeing my pants! I tell ya, it's either laugh or cry with all this! Hope all of you get to feeling better!!!
gail4855
gail4855
Mary Ann:
You have gone thru so-o-o much! I pray you will get some relief soon! My MCTD/Lupus now keeps me up all night. I understand your sleep deprivation! Hang in there. I'm going to be checking up on you to see how your doing. Okay? I really do care.
MToennis
MToennis
Thanks all. I finished all the shots but I have developed bruising in numerous places. Mainly on my backside where the shots were given. The nurses were pretty shocked by Friday by the size of the area. About 8 inches by 4 on each side. Hurts to lean back or lay on my back. But I also have bruises on my arms. I think it is the Cystex as it has a salicylate in it. I am taking a third of what she said I should take as I already take an aspirin daily. Think I will have to go off it . I have 2 Dr appointments this week for my heart. I can talk to the cardiologist about it. Oh well!
Mary Ann
kmaharg
kmaharg
I like the advice to get your money back if a doctor doesn't seem to believe you! I have spent a lot of money in trying to figure out this MCTD and wish I had walked out of the doctor's office on many occasions. After listing a multitude of symptoms (calf fasticulations, fatigue, muscle soreness, severe tinnitus, geographic tongue, etc) to a Rheumatologist once, her only advice was something like, well we can give you something to take for the Ranaud's. I remember thinking, Ranaud's - that's the least of my worries!! If she couldn't get the fact that I was in a bad state with everything I just told her, she shouldn't even be practicing medicine!!
VesnaP
VesnaP
I feel your pain!!! I'm very frustrated as I have been in such awful pain - with flares that literally make me insane with misery, & yes my narcotics also can't even touch them - for a year and a half now. I initially thought I had a UTI on steroids with additional stabbing pain in my pelvis. And although they couldn't find bacteria in my urine, I tried 4 different courses of antibiotics before I was referred to a Urologist. The first urologist did a cystoscope and confirmed that I did indeed have IC. But the pain would be SO excruciating and he refused to prescribe me any narcotics to cope with it. So I went to another Urologist who did another cystoscopy & said that I showed no signs of IC??? He advised me to go to an obgyn as he thought I could have Endometriosis (similar symptoms). So I go to an OB, he does a laparoscopy, finds 3 endometrial lesions, removes them, tests the smallest of the 3 & it comes back negative for Endometriosis. I then go see a pain mgmnt Dr who thinks I'm just an addict trying to score drugs, & another obgyn who special in pelvic pain who is convinced this *hit (excuse my French) is all in my head! I feel like I'm going crazy. It hurts SO bad every time I use the bathroom. It burns and hurts to urinate. It also kills me to push at all for a #1 or #2. I feel like I have a knife stuck up my urethra and inside my bladder & lady parts. I then started seeing a new obgyn who actually believed I did have Endometriosis and maybe IC too, who thank GOD has been prescribing me some Percocet to deal with this, but has since been contacted by the last obgyn pain specialist who convinced him that he needs to stop prescribing the narcotics. So I have 2 days left of pain meds before I will have no assistance with the pain and it's too much for me. I don't know what else to do. I swear this condition has literally zapped almost every bit of strength I have both physically and mentally and I have not had much luck being appropriately diagnosed, treated or even in some cases believed! I've made 1 too many trips to the ER in excruciating pain only to be treated like a junky or a delusional mental patient. Does anyone have any suggestions??? I swear I just don't know what to do anymore. This is impacting my life to SUCH an extent not only am I miserable, my husband of less than 4 months is ready to leave me and I don't know how much more I can take of this. :(
MToennis
MToennis
Ask to see a physical therapist that specializes in pelvic pain. I have been doing this for 3 months and the pain reduction is amazing! Turns out, my pelvic muscles were in continuous spasm from the infections and repeated insults from surgery, childbirth and a broken tailbone I had years ago. It has taken a long time but I really thought the pain was from the infections alone until I saw the therapist. With her exam, she was able to pinpoint which muscles were involved and start me on treatment. I know how bad the pain can be. Cant sit, cant sleep and on and on. The company I went with is called Results Physiotherapy and specializes in hands on pelvic therapy. They even care for men who have had prostate surgery and women after childbirth. See if you can get the Dr to give you a referral. You might look on line for places that specialize in that therapy. And good luck.
Mary Ann