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  • Deep lower back pain

    Hi i am 22 years old i was diagnosed with I.C when i was 16yrs old. I just went to my urologist yesterday and had another cystoscopy done and she said my bladder wall is very irritated still and the ultrasound shows my bladder wall thinning. I had told her about these kegels i had been doing. Now i realised i was doing it but cant stop. ( kinda like restless leg syndrome but the vagina.) she prescribed Valium suppository for my pelvic pain and the spasms.Has anyone used these ? I am getting back on my Elmiron . I am curious if ANYONE has any suggested way to sleep and wake up without that deep sharp lower back pain that will go to the front where my bladder area is ? HELP PLEASE !

  • #2
    Re: Deep lower back pain

    Mendobaby95

    I have read your story over and over again. I too have back pain I am sure from my bladder. I go to bed with it at night and wake with it in the morning.

    It gets a bit better once I am up moving around, but gets worse as the day goes on or if I stil or stand too long.

    Vaginal Valium helps, muscle relaxers help but cause me retention if I take a few in a row.

    Diet works to help improve your bladder condition, improving your bladder will help with the back pain.

    FYI I realise you are new here, but you only need to post once, not the same story in multiple catigories. I sure you will find that most people read most of the posts so no need to worry that you might miss someone. I realize you are just covering all your bases, that you really want some help, I am sure others will answer if they have any ideas
    My are with you all. May you all find a way to peace and joy in your lives.

    Comment


    • #3
      Re: Deep lower back pain

      I had lower back pain a year and a half before ic came along. I ended up having an MRI which found nothing wrong but I now think it was all part of the ic thing all along. I have found I am more comfortable lying on my side with a pillow between my legs. I used to like lying on my front as it seemed to ease my back but with a sore bladder can't anymore and although I like lying on my back I find I can't for too long - I guess from all the swelling in the pelvic region.

      Comment


      • #4
        Re: Deep lower back pain

        Thank you ladys for the advice. Yes thank you for bearing with my .
        I will give the pillow a try tonight and update tomorrow.
        I usually lay on my left side as i fall asleep, my man says i sleep on my back. I know i will wake up at night to go to the bathroom and i come back in and lay on my tummy ,because around the second time of me getting up to go my lower back is hella hurting. Then when i wake up in the morning my whole pelvic region hurts and aches sometimes throbbing. I appreciate the advice !!!

        Comment


        • #5
          Re: Deep lower back pain

          I have suffered from low, deep back pain for quite some time as well! I take Valium suppositories 2x/day as well as oral muscle relaxers 2x/day which help. I will agree with Mothergoose that at times I've suffered with retention as well as hesitation from the medications, but they do help the pain. I also see a chiropractor every 10 days who does light adjustments in my hips and back and uses pressure therapy. I also see a pelvic physical therapist who does the same with pressure therapy and stretching. It helps! I still suffer from pain and have trouble walking/standing for too long, like mentioned above, but there are definitely therapy options out there to help these sorts of pain! Also, hot/cold therapy with heating pads and ice packs tend to help as well.
          Diagnosed with severe IC and Endometriosis in 2016
          Medications: Elmiron, Elavil, Myrbetriq, Uribel, Valium, Baclofen, Percocet
          Surgeries: Laparoscopy, Hydrodistention (2)
          Procedures: Regular bladder instillations
          Therapies: Pelvic Floor Physical Therapy 2x/week, homeopathic home-care, yoga and massage

          Helpful Links:

          Patient Help: http://www.ic-network.com/patientlinks.html
          IC Diet: http://www.ic-network.com/patient-re...-introduction/

          Comment


          • #6
            Re: Deep lower back pain

            Thank you Katie !!! I feel ridiculous when i say my back hurts. Im only 22. You know? Im gunna be very blunt right about now so i apologize if its to much but i will feel like my vagina is spreading or like my insides get heavy or feel like they are gunna fall out ? If that makes and sense. My period. ... Geez its very heavy with ALOT of blood clots. And the cramps ???:0 😱 I do try my hardest to hold in the fact im hurting because its ALL THE TIME it seems and i feel like people think im just saying poor me. Nobody understands what its like. It doesn't seem like its too bad i guess or something. .. But living with it is hell!! THANK YOU AGAIN !!!!
            I am so thankful to have found a place that people actually knows how it really is to experience I.C.

            Comment


            • #7
              Re: Deep lower back pain

              You are not ridiculous to say it at all! It happens to a lot of us. I'm only 25, so I understand what it's like to be young with IC. It's frustrating to say the least. I am intrigued by what you said about your menstrual cycles. I had the same exact issues: very heavy and excruciating pain throughout. They also lasted a very long time. During my IC diagnosis journey, I saw a urogynocologist who asked me a lot about my menstruation during my first visit. It surprised me because I was there because of my IC. What I didn't know was I also had endometriosis, which she later confirmed with laparoscopy, during which she removed it. I don't say this to worry you; just to maybe encourage you to bring these things up with a physician when you get a chance, because these conditions like endo often accompany IC.
              I have the same problem with feeling like there's a heaviness on the inside; almost like there's a brick sitting in my pelvis. It's common. It can be caused by the inflammation. If you haven't already, I'd check out the IC diet. It's usually really helpful! And, I have found that peppermint tea/extract and other natural anti-inflammatories help with that heavy feeling. You might give that a try.
              Diagnosed with severe IC and Endometriosis in 2016
              Medications: Elmiron, Elavil, Myrbetriq, Uribel, Valium, Baclofen, Percocet
              Surgeries: Laparoscopy, Hydrodistention (2)
              Procedures: Regular bladder instillations
              Therapies: Pelvic Floor Physical Therapy 2x/week, homeopathic home-care, yoga and massage

              Helpful Links:

              Patient Help: http://www.ic-network.com/patientlinks.html
              IC Diet: http://www.ic-network.com/patient-re...-introduction/

              Comment


              • #8
                Re: Deep lower back pain

                Thank you Katie. Sorry to say this but im glad im not alone. It sucks tho. I am supposed to be doing physical therapy. .. But what exactly is it they have you do in order to loosen the muscles? I do want to look into starting a diet. I tried doing exercises and jogging and what not but it doesn't help. I love peppermint tea so i dont mind keeping up in that one do you have children?

                Comment


                • #9
                  Re: Deep lower back pain

                  I had the same period issues I was diagnosed with adnenomyosis (sp).

                  After I had my children I had a hysto for this, I helped with the symptoms, but not all, that is what promoted the investigation for IC.
                  My are with you all. May you all find a way to peace and joy in your lives.

                  Comment


                  • #10
                    Re: Deep lower back pain

                    What my pelvic physical therapist had me start with was the "happy baby" stretch. First do only one let at a time. If you google it, it's easy to find. Lie on your back and focus on relaxing and breathing. Lift one leg up, bend it, and grab either your calf or foot and pull it towards you and slightly outwards. Hold anywhere from 10-60 seconds. I'd start slow and work your way up. She also recommended light abdominal skin tugs. I know it sounds odd, but it gets the top layers of muscle moving and can promote loosening of the deeper muscles that are causing you pain. Again, lie on your back and with either one hand or both, lightly grab small amounts of your skin and pull and hold it in all 4 directions (up, down, and left/right). Don't tug hard. Go slow and again focus on breathing and relaxing. There are tons of other stretches and exercises you can do, but I'd start there.
                    As far as exercise, be careful and start slow. Exercise can be a trigger for flares, especially high-impact, abdominal/core workouts, and anything that can be jarring. It's totally possible to workout with IC, but definitely take the time to find what works for you!
                    The IC diet can be found here on the IC Network or on the IC Association websites, as well as just a google search. I'd start there. Don't be scared by how much is on that list. Not every food in the 'caution' and 'try it' side is going to affect every person! Again, it takes time and trial and error to find what to avoid.
                    Peppermint tea has become my #1 ally! Girl, I drink that stuff like it's my job. And it really does give some relief. It also helps to like the taste ;p! I don't have children, but am married. I am relatively young to have IC, and have endometriosis as well, so navigating if and when we want kids is something we're putting off for now until I feel I have things under better control. How about you?
                    Diagnosed with severe IC and Endometriosis in 2016
                    Medications: Elmiron, Elavil, Myrbetriq, Uribel, Valium, Baclofen, Percocet
                    Surgeries: Laparoscopy, Hydrodistention (2)
                    Procedures: Regular bladder instillations
                    Therapies: Pelvic Floor Physical Therapy 2x/week, homeopathic home-care, yoga and massage

                    Helpful Links:

                    Patient Help: http://www.ic-network.com/patientlinks.html
                    IC Diet: http://www.ic-network.com/patient-re...-introduction/

                    Comment


                    • #11
                      Re: Deep lower back pain

                      Dang i will definitely look up a few different exercises! I have read about the physical therapy and how some people have to literally have their therapist use some kind of machine and fingers ..... ? Thats why i was stand offish. Im glad i asked! !!My mom had Endometriosis at age 23 i believe. The shots they had her on made her go through menopause. They thought i had endometriosis and had done exploratory surgery and they found everything looks fine. I started going to urologist and she sent me to UCSF when i was first diagnosed. I just woke up,i slept with a pillow between my legs... My back hurts pretty bad tho: /
                      I do not have kids. I feel it is maybe going to be harder for women with I.C to get pregnant? ? My fiance and i have been having unprotected sex for little over a year now. But i dont know. We look at it as it will happen when it happens all i can do is be patient. I was diagnosed age 17 :/ Wby?
                      I wonder what having I.C is compared to. Does that make sense?

                      Comment


                      • #12
                        Re: Deep lower back pain

                        Part of pelvic physical therapy usually does involve some invasive parts, because the pelvic floor muscles involve the vaginal muscles, along with deeper muscles easiest accessed vaginally. Some therapists use a tens unit or ultrasound machine to help promote relaxation of the muscles and help with pain. My therapist uses her fingers to manually massage and stretch the muscles to help them relax. It is a bit invasive, and I can understand why you might be a bit wary, but it really is helpful; at least for me it has been so far. I have soreness afterwards, but it wears off after a day or so.
                        I'm glad you didn't end up having endometriosis! It's not fun.
                        It's not uncommon to have back pain with IC either though. I do. Many believe it's due to referred pain and from the inflammation.
                        Some women with IC find trying to have kids hard because sex is painful. But, from what I've found, it doesn't affect fertility, if that's what you're afraid of. We haven't started trying yet, so I'm not super knowledgeable about it, sorry. I was diagnosed at 24 after 2 years of symptoms and doctor after doctor.
                        It does make sense. It's been listed as one of the top 10 most painful medical conditions and is recognized by the Americans with Disabilities Act. I always compare it to the worst bladder infection you can imagine when people ask what it feels like. It's different for every ICer though.
                        Diagnosed with severe IC and Endometriosis in 2016
                        Medications: Elmiron, Elavil, Myrbetriq, Uribel, Valium, Baclofen, Percocet
                        Surgeries: Laparoscopy, Hydrodistention (2)
                        Procedures: Regular bladder instillations
                        Therapies: Pelvic Floor Physical Therapy 2x/week, homeopathic home-care, yoga and massage

                        Helpful Links:

                        Patient Help: http://www.ic-network.com/patientlinks.html
                        IC Diet: http://www.ic-network.com/patient-re...-introduction/

                        Comment


                        • #13
                          Re: Deep lower back pain

                          My pelvic floor PT has been incredibly helpful in reducing my pain-and yes,there is some "internal" work. I wouldn't say that the muscles she works on are "vaginal" muscles at all. My peskiest muscle is an "obturator". When she works on my too tight muscles it is like when you have a "knot" or tight point in a neck or shoulder muscle.She can feel where the muscle is in a spasmy little lump & she just hold pressure on it until it releases. It is a bit uncomfortable,but I always tell her (when she checks with me to see if it is too painful) "just do it as a hard as you can,get rid of it!".But she has pointed out that excess pressure is counter-productive. She says we are finding the too tight muscles and teaching them how to stay relaxed. To my amazement,it is working. Now I can tell when I am tightening up and realize that the feeling of bladder and vulva burning is originating in these little tightened muscles.It is very empowering to learn how to manage this!Sometimes I can get myself to think about what is stressing me out and get things to chill,sometimes I need to take a muscle relaxant(am going to ask my uro about vaginal Valium so I can keep my head clear instead of taking a pill that makes me spacey) and sometimes I still have a little knot that needs gentle pressure to remind it to lay down nicely.I am ordering a "therawand" so that I can do my own release of my pesky obturator if needed,and my PF PT is going to show me how to use it.(although I privately am hoping that in 3 weeks I have managed to stay out of spasm & it really is likely-yay!) Before pelvic floor PT I would have NEVER imagined that a significant part of my IC pain was from any kind of muscle tightness-and I'm an athlete with really good body/muscle awareness.AND my uro didn't think I was a candidate either.. You owe it to yourself to try it-it has been a life changer for me. Be brave-you have nothing to lose but pain! And trust me,prenatal checks & giving birth are much more "invasive"- you can do this!For some insight into the goals and successes of Pelvic Floor PT,go to the website (& blog) of Stephanie Prendergast at Pelvicpainrehab.com. Tons of information and stories there!

                          Comment


                          • #14
                            Re: Deep lower back pain

                            My urologist says the heavy feeling (I say my bladder feels like a 10 pound medicine ball) is nerve pain.

                            Comment


                            • #15
                              Re: Deep lower back pain

                              I totally agree with icshorty! Pelvic PT is completely worth a try! It has given me a new-found hope that I may be able to overcome some of the debilitating pain I experience with IC. My urogyn originally dismissed pelvic PT as an option because I don't have PFD. But after discussing it more, and being under her care more, she realized I had chronically tight muscles and referred me. It was a total Godsend!
                              I take Valium suppositories and it's helped, icshorty. I'd give them a try.
                              I was told the same thing about the heaviness; nerve pain.
                              Diagnosed with severe IC and Endometriosis in 2016
                              Medications: Elmiron, Elavil, Myrbetriq, Uribel, Valium, Baclofen, Percocet
                              Surgeries: Laparoscopy, Hydrodistention (2)
                              Procedures: Regular bladder instillations
                              Therapies: Pelvic Floor Physical Therapy 2x/week, homeopathic home-care, yoga and massage

                              Helpful Links:

                              Patient Help: http://www.ic-network.com/patientlinks.html
                              IC Diet: http://www.ic-network.com/patient-re...-introduction/

                              Comment

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