New to IC Land

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i am new to this latest version of hell and have been researching for the last few weeks. I've had my symptoms with little let up for about six weeks now. I've seen two docs, most recently my gyn and have had an ultrasound which proved to be clean. Next will be a urologist. I've studied the nasty quasi cures that may or may not be effective and the fact that most women are slaves to this unless they're fortunate enough to come across something that might just work. I'm shooting for alkaline foods and cannabis cookies when the pain is really bad. I do not want an anti coagulant which may do nothing but thin my blood; I don't want an antidepressant that will add weight and perhaps nothing more and I don't want my bladder distended or filled with heparin. I am disgusted and upset. I've been recently reading stories from IC patients and feel so badly for your suffering. I have been taking Advil round the clock; sometimes it helps and sometimes it doesn't. Forgive me if my mood isn't too bright. I want this lower pelvic pain, burning and lower back pain to go away. I have had these symptoms over the years but they have always fully gone away. This time it won't and I wonder why. If anyone has read this rant, well, thanks for reading. If anyone has any thoughts I'd be happy to read. 

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  • Posted

    Hi Marylh, your in a bad place now l know just how you feel , it hurts , its wrecking your life ! I have had priblems for 11 years with this , 2014 /15 was the worst l nearly lost my mind , l hit rock bottom , then l started fighting back, l got ( after nearly going down on my knees to my gp a referral to a uroligist , tests followed all came back negative , but l was handed into the care of the chief urologist nurse , she was nothing short of my guidian angel , she followed through a sample that was yet again sent to the hospital and discovered that it was not strsightforward cysistitis but painful bladder syndrome or IC , its feels just like cysistitis . The treatment is different , no antibiotics ( they dont work ) l have an anti acid tablet and ammytripilineevery day . The ammytripilin was formerly used as an antidepressent but has seen proved its worth as a painkiller. I also had 12 bladder installations which put a lining on my bladder . I have had a pain free year , l thought l would never get to feeling normal again , its a constant fight l will never be able to give up l follow a strict diet , if you click on to C O B you will be able to get diet help and loads of other imformation . I think the diet helps massively plus l have lost over 3 stone in weight which has lifted my morale high l can tell you . I also stopped using anything toxic on my body , l stopped dying my hair and only wash in aqueous cream l started just using it for down below but now l use it all over , its cheap ad it makes your skin really soft. Cotton panties are a must , ditch the tights and the trousers although l sometimes wear cotton ones but not for long periods of time. Don,t be afraid of all drugs , taken intelligently they can work wo nders , l always check them out online and always read the notes in the boxes , l never use to but experience l taught me better , l found ou a drug l was taking gave 30% o takers uti,s so l changed to another one , my consultant was most helpful . You have to do the research its worth it . Well speech over ! Hope l,ve been some help to you , tell your cibsultant every thing , don,t hold back and get answers that you understand , they can sometimes blind you with science. Good luck , keep your pecker up , you will get sorted :-))
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    • Posted

      Hi Winifred, thank you so very much for your kind response. I cannot believe you've been dealing with these symptoms all these years. My gyn wants to do a bladder installation but I'm not sure I want that. Can I ask you how long it took for you to be disgnosed? I have had a pelvic ultrasound which came back clean. How do they even know that this is really IC?  I understand that you need 8 of these installations and they may not work for everyone. The antidepressant you mentioned...the amitriptyline...how does that work for you? My primary doc (gp) prescribed it for me but I haven't taken it. I know you said not to be afraid to take these meds and I only have fear if the side effects are too off putting. The 3 stone you lost...I looked it up as I am not English and see that it is equivalent to losing 14 pounds. So you lost 42 pounds? That's a lot for anyone to lose. The thing is, I've read that the amitriptyline adds weight like crazy. I was prescribed 10 mg. So you took this med but did not gain any weight with it? And it helped the pain? Anyway, I believe, as you seem to, that diet and nutrition is everything, My gyn gave me some material on foods to avoid and I was quite shocked. Since I am a vegetarian much of my food is soy based (non GMO) and those delicious pistachio nuts I've been gorging myself on aren't good for me either. I am thinking an alkaline diet may help me. I also hear aloe vera helps alkalize and is effective. But for now, I have had no treatments as I have just been diagnosed and have had little to no relief from the awful pain and burning that I get. Not one of the docs I have seen thus far has prescribed anything that might help with pain. Well, thank you so very much for your quick and kind response. I appreciate all the help I can get during this miserable time. Take care.

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  • Posted

    Hi,I wonder how old you are?   Are you nearing the menopause? If so,the tissues around the urethra,and vulva,vagina are all beginning to thin.    I have suffered like this all my life and after trying everything under the sun I am convinced its all due to fluctuating hormones.    you could ask for Ovestin if you are in UK,but I think its called something else Estrace[?] in US.        This seems to be one of those problems that urologists dont seem to understand and will do cystoscopies and  scans and all sorts of invasive tests to pinpoint the problem,usually unsuccessfully.      I understand your low mood,having been there many times. Big hug for you......there are so many ladies like you and me......dont give up.
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    • Posted

      Thank you so much for writing. I am in the states. Do you know if this site originates in the U.K.? I love your country, been there on many occasions. I am in my 50s now and I have had symptoms like this in the past. But now, this bout has lasted over a month. It is very depleting, I will not let anyone extend or installate my bladder. I think the treatments are all bogus...this one has an anti-coagulant and this one is an antidepressant which adds excessive weight. I have read so many forums by this point and see how what works for one may not work for another and what works today may not work tomorrow. All I can say is why now? In my heart I'm beginning to feel that diet is a huge part of any success to combat the symptoms. I have been to three doctors and not one has given me anything for the pain. I eat ibuprofen like candy. I am going to shoot for an alkaline diet and see how I do with that. I understand many people have success with aloe vera. And I understand about the wine...I love wine but don't drink it too often. Don't care for tonic, however. You have been such a huge help and are so kind to reach out.  I am so sorry to hear you have had symptoms like these all of your life...you poor thing. Take care and thank you again.

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  • Posted

    Its  UK registered site but dont let that put you off. There are all sorts of contributors on here from all over the world but I think the majority are from UK and USA. So you are probably menopausal going by your age. Are you taking any form of HRT? The HRT used locally ie cream or pessary is low dose if you are worried. Do you still have your uterus and ovaries?
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    • Posted

      hi, no HRT. I don't like or trust most stuff like this. I realize it can be helpful in some areas but the risk of cancer, especially breast, goes up. I have had a hysterectomy but have a remaining ovary, i have a history of endometriosis and bad periods. My gyn referred to IC as "endometriosis' sibling."' As for menopausal, I guess I am or have...I never really got terribly simptomatic of it. But you know what? Today has been a good day...I'm not totally free of pain but it isn't ripping my insides out the way it sometimes does and for thst I am grateful. Is this how I'm going to live my life? Being grateful for such pain free moments? Yikes, but I'm not complaining. I just don't understand why I'm getting this now.

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  • Posted

    I don't no if I have I.C. I have chronic pressure and pain in my clitoris and urethra maybe my vagina. Urogynecologist tell me I have to have a Cystoscope test to find out if I have I C. I'm terrified of that test. Do you have any advice and support. Any remedies to help relieve pain and pressure

    Michelle

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    • Posted

      Hi Michelle , the test does not hurt an only takes a few minutes to perform , your consultant will be able to tell you there and then if you have IC or not , also if you sent a urine sample to the hospital when your having an attack that can also tell you if it,s IC . You need to pre arrange with the urology dept to do this , l had the cystoscopy test and it was a good day and nothing showed up so a urine test was set up just to look for IC . It worked for me , my urologist gave me the correct meds ( antibiotics will not work for IC ) and l also loomed at the COB site for diet advice , which l have followed to the letter. Also drink plenty of water andcut the cups of tea and coffee down . This as worked for me and l have been pain free for a year now , which is fantastic as lwas in agony on a regular basis for years. Follow your consultants advice it sounds like good advice to me . Hope my story will help you , l hope you feel better soon , l am sure you will .
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    • Posted

      Hi Michelle, I have never had a cystoscope although in trying to learn more about this disease I have read of other women having them. My gyn has not suggested that test although I know how it can detect things like lesions and irritation along the bladder wall as well as the inability to completely empty the bladder (in which case I believe a tube is inserted). . Since the outset of this I have had mild to severe pain, both in my pelvic area and sometimes sweeping around my back area. I have had the pain and discomfort you mention in the whole vagina area. Sometimes it's extremely painful. I only seem to get that when I'm having a really bad flare up.  I have read where some women need pelvic floor physical therapy...I'm not sure if that would offset the pain felt in the vagina area. I am still so new at this. Sometimes I do Pilates when I am in pain...it seems to help, believe it or not. Can you speak with your doc about your fear of this test? I have read where some women are ok with the test while others opt not to have it. For women who cannot completely empty the bladder it seems to be a necessary test. Some docs feel this is the definitive test to diagnose IC. Either way, you will need either local or general anesthesia..so if you decide to go ahead with it you'll have to check with the anesthesiologist as to which yours will be. Some women do report problems after the test while others do not. In most cases, I would think these problems are temporary. Have you been around the forum reading of others' experiences with these tests? They might put your mind at rest. The vagina pain I have no idea how to get past. Sometimes I get a heating pad and lay it down there. Sometimes showering or a bath helps. Also, wanted to ask if you have ever taken aloe Vera freeze dried capsules? Aloe Vera is said to coat the bladder wall and can be soothing. It does help me as does keeping strictly to a non acidic diet...although I'm only human and sometimes I just want that one lousy cup of coffee! and I end up paying for it later in the day. They say also to keep well hydrated...drink lots of water. I would recommend that unless you aren't able to completely empty your bladder in which case you don't need the extra headache of trying to completely void. I'm sorry I don't have any concrete answers, Michelle...it seems like a lot of women don't. I am grateful for good days with low to no pain levels...but it can be quite a challenge when it gets bad. I hope your doc can help you. Find out how many cystoscopes he or she does on a yearly basis and if their outcomes are successful. That is your right as a patient. Best wishes to you. I hope you feel better. 

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    • Posted

      Thank you for responding. You say aloe Vera capsules help? I hope your pain goes away. Pray for my healing too. I'm going to have a transvaginal ultrasound and see what the results are. I'm also having a mammogram. I'm seeing a new Urologist December 29th and hope he is a good doctor compassionate and educated and experienced.

      God bless

      Merry Christmas. Michelle

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    • Posted

      Hi again, Michelle, I just saw this post and wanted to say yes, the aloe Vera freeze dried capsules do help. More than that I believe keeping to an alkeline diet helps my pain immensely. I had two ultrasounds, also...trans vag and pelvic. Be aware that some women have atrophy down there so the trans vag ultrasound can actually hurt. Best wishes with your new urologist. My feeling is unless they specialize in this disease they pretty much go with what they know is already being done? Here in America I hear there are new clinical trials being done. Who knows? And yes, compassion is key, of course. I will certainly keep you in my prayers. Hope you're having a good day! Best wishes.

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  • Posted

    Hi Marylh,

    I have been a suffer for 4 years now and had so many infections I've lost count. The pain is awful as you said and as all us suffers know and experience. I have been in hospital recently for my second bladder dilation which seemed to have worked at least for the past 3 months. Its now 4.0am and I am sat typing this reply and feeling I have another infection starting. I am struggling to pass water and when I do its very painful. Also I have the lower back pain and groin pain so its going to be a visit to my GP in the morning for antibiotics. I am unable to take anything which contains cranberry as I'm on blood thinners, so I am very limited to what I can take. I have read that D Manose is a very effective treatment and contains no prescription drugs and I would have tried it but it contains cranberry in it. 

    My consultant said that many ladies have to go into hospital annually for a bladder dilation, so I am expecting to go in again next year if the infections continue. I think my next visit to see my consultant I will be asking him about self catherterisation in order to prevent further infections.

    I hope you have received helpful comments from fellow suffers and will let you know how I get on next.

    Gill

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    • Posted

      I don't think you read my post. It's about pain/pressure off and on in my clitoris area. Have you or someone you no have a Cystoscope test? Did they have twilight sleep sedation? Go to Sprouts or a health food store and ask for D-mannose without cranberry.

      God bless

      Merry Christmas

      Michelle

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    • Posted

      Hi Michelle, I did read your post but when I went to reply the posts got screwed up on my end. I apologize for any confusion. This IC business is so awful. Thank you for your recommendations, I hope you are doing ok, as well. Merry Christmas and God bless you, too!
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    • Posted

      Hi Gill, I tried to respond to you twice but not sure you received. Something went wrong when I hit the reply button. Please let me know. I will write back if you didn't get the other two messages. I hope your pain isn't as bad as you thought it was going to be today...it's awful, I know. Take care.

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    • Posted

      Hi Michelle I didn't see your message but I've been put on antibiotics again for the infection and feel really quite ill with it. I was unaware that you could get D mannose without the cranberry in it, but I will certainly look into it. 

      Regards Gill

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    • Posted

      Hi Marylh,

      I didn't receive any other messages from you but since my message this morning I have been to the doctors and he has given me a strong antibiotic for the infection. Only one antibiotic seems to work for this particular infection I keep getting and I am feeling quite ill with it. Hopefully I should start to feel better by Wednesday and my specimen has been sent to the lab for testing. 

      My condition is caused by my bladder not emptying fully hence causing the persistent infections, but the dilation doesn't seem to have worked again. When I see my consultant in the new year I will be asking about the catherta and see what he say otherwise I will be on a constant course of antibiotics to try and keep it under control.

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    • Posted

      Hi again, Gill, well, what I was trying to say that if you did have proper IC the docs do not recognize it as an infection so do not prescribe antibiotics. Bladder installations, cystoscopes and dilation are routinely performed. I try to stick with an aalkeline diet and aloe Vera freeze dried capsules. They seem to help me. A word of caution about the dilation...from what I have read of others' experiences with this, it can cause incontinence or a bladder hard to control. I am not convinced that what you have is IC. I know there are women who routinely catherize to get the relief they need. See what your new doc has to say. And, as you are taking so much antibiotics please ensure you are taking a good pre and probiotic. It will help your gut health. You simply cannot be on antibiotics for the rest of your life. Best wishes to you. I hope your day is going well.

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    • Posted

      Hi Marylh,

      I am thinking of looking into these alkaline free diet and the aloe vera freeze capsules and see if I can take them. After yesterday anything is worth trying as the pain I experienced yesterday is the worse pain I've had and has made me feel really ill. Thankfully today the pain is much more bearable and I am taking my pro-biotics again to sort my immune system out. Up until I had the recent bladder dilation in September I had been back on my antibiotics in a low dose and one each night. But I'm at the end of my tether now and the infections are caused because my bladder isn't emptying fully, so I think the catherterisation will help even if I only have to do it once a day. I am 71 and have other health problems but this is controlling my life when its really bad and I know that the next thing the consultant told me is to have the camera in my bowel and bladder at the same time, but a bit invasive but who knows maybe they will get to the bottom (excuse the pun) of the problem then.

       

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    • Posted

      Hi Gill, I am sure you are more than fed up by this point. I get those days, too...some days where I'm feeling fairly normal and the next the pain is just all consuming. I do find that when I keep to the correct diet I usually do much better. They also say to drink lots of water...but that may not work for you, as you are having this difficulty completely emptying your bladder. Let me ask you...have you been able to read on the various forums, stories of women who have had to self catherize? When my GYN started to discuss IC with me she referred to it as "endometriosis' sibling," I'm not sure why. I had endometriosis just after I had my daughter in the mid 90s. It was ghastly. At my worst with IC, sometimes it feels like really bad menstrual cramping. When this happens I just want to shout to the Universe. "Really? Really, universe? I didn't have enough of this all of my life" in any event, you can certainly try the alkeline diet and the aloe vers capsules...they won't hurt you and who knows, could end up being soothing for you. I'm just thinking if the self catherizing will do the trick for you then maybe you won't have to be putting up with these random horrible pains the way IC usually works. Just be mindful, as I pointed out yesterday that the dilation can also be harmful. Make sure your surgeon is knowledgeable and performs these procedures successfully. Find out how many he does in a year and if anyone had adverse effects. You are entitled to this information as a patient. Many docs seem to inhibit their patients or rather, the patient doesn't feel at liberty to discuss for fear the doc will be condescending. Screw that. You're entitled and should never keep,quiet when you have questions that need answers. Anyway, I wish you a free day, take care.

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    • Posted

      Hi Marylh

      Sorry for the delay in replying to your last message. I have looked up on the various alkaline diets you mentioned but they seem to contradict themselves. One says to take an alkaline diet and the other says not to as to much alkaline can cause urine problems. You also mentioned that you had endometriosis, well this is something I can relate to as a 71 year old lady I suffered awful period pain and bleeding from the age I started my periods at 13 years. Back then nothing was really known about endometriosis but I am convinced that's what I had as even after childbirth my periods were still very heavy and painful. It was so bad that I ended up having a hysterectomy at the age of 34, and this made a big difference to my life painwise as you can image. Later into my late 40s I had a big bladder operation and things got much better in the waterworks department. Unfortunately though for the past 4 years I have suffered continued water infections. I understand what your saying about the dilation but what happens is that the uretha closes back up after so long hence the dilation every year. I don't feel I can keep going through this process so when I see my consultant in March I will be suggesting the self catherterising as its got to be better than taking the antibiotics constantly.

      Gill

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    • Posted

      Hi Gilly, I don't really have any answers, unfortunately. I just hope things do work out well for you. Like you, I have had menstrual issues for years and years. My endometriosis was finally diagnosed after I had my daughter. The pain was awful. As far as alkeline diets, I'm not sure what site you were visiting but my gyn had originally given me an extensive list of foods to avoid, where these foods turn acidic once digested. For me anyway, it does seem to help me quite alot to keep to an alkeline diet. I do hope you get good results from your doctor appointment in March. As far as the cystoscope and other invasive treatments, I have read from other women where they have been damaged by these tests, causing things like incontinence, pain down there or reoccurring infections. I think the main issue is that not enough is known about IC. These procedures may help but they also come with a risk. I suppose it depends on how fed up one is to undergo one of these treatments. For now, I will continue to do the diet thing, drink plenty of water, take my supplements and hope for the best. I wish you all the best for the new year and good luck at your appointment.

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