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  1. #1
    ICN Member cindog's Avatar
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    Doctor thinks I have IC? constant bloating etc

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    Hello!

    I'm a 23 yr old female from England, and I wondered if anyone experienced and knowledgeable could please kindly share their thoughts on my doctors suggestion?

    My symptoms started in September 2014 (so 8 months ago). Between September and January, the only symptom I had was severe bloating. This seemed to happen overnight. I used to exercise a lot (until it became too uncomfortable) so had a flat firm tummy, and was suddenly very bloated literally ALL the time. At first I thought it was because I had changed my birth control pill to Cilest (sorry - unsure of the US name), so after 4 cycles I switched to Yasmin (around November). Unfortunately there was no difference in bloating (but for the first time in 10 years I have no acne woooo)

    In January, I started getting pains that reminded me of a UTI. A bit of background history - I first had regular cystitis at the age of 9, and had it all through my teen years - sometimes as much as twice a month. I haven't had it in over a year though - I found giving up orange juice stopped it, though I've been okay with all other drinks.

    The first doctor I saw took a urine sample, but it came back clear for a UTI - though I had white blood cells in my urine. The second doctor thought it could be stomach spasms (although I have no other symptoms of IBS) and gave me meds to take with food - these didn't work unfortunately. My blood tests all came back okay too.

    I was finally able to see my usual GP, who sent me for different types of ultrasounds which all came back okay. She wondered if it could be endometriosis - the pain IS much worse around that time of the month, but my periods are light and the pain isn't like period cramps. So I was sent to a gynaecologist who suggested IC. She also tried to give me an internal exam but it felt like I was being stabbed inside and I cried (so embarrassed). I think she's referred me to a bladder specialist, but she's not yet contacted my GP :/

    Their current idea is that I will have a laparoscopy and a bladder biopsy, but nothing's confirmed yet. My GP has given me amitryptiline, but I won't know if it works with the really nasty pains until next month.

    So in a nutshell (sorry if I've rambled) my symptoms are:
    - Bloating in September 2014
    - Pelvic pain in January 2015 (worse during period)
    - Vaginal pain (could be from anxiety)
    - Urine tests always come back with white blood cells
    - Misdiagnosed as UTI, stomach spasms
    - Clear ultrasounds
    - Clear bloodtests


    I've read a lot of threads and links about "IC belly". Does it sound like this is what I have? It's there 100% of the time and looks like I'm pregnant I've read that antihistamines and a raw food diet can help - can anyone offer their views on this? Food doesn't seem to have any effect on the pain.

    For me the most upsetting bit is the impact it will have on my career if I can't control it. I've already had quite a few days off sick I work in IT and do my degree in my spare time, and I really don't want to undo all the hard work I've put in. I also feel quite antisocial, because I can't wear any of my nice clothes and just feel gross most of the time. I just feel quite lonely, miserable, scared and upset really.

    Thankyou in advance for any help x

  2. #2

    Re: Doctor thinks I have IC? constant bloating etc

    Your story fits IC really well. However, I can't tell you for sure what you have, only the doctor who does your bladder surgery can (ask that a hydrodistention be done, if it is not already).

    Out of curiosity, do you have any stomach symptoms other than bloating? Diarrhea, constipation, cramps, difficult bowel movements, etc? (There is a theory that the bladder, the vagina and the lower intestine are all connected pain-wise due to nerve arrangement in the lower spine).

    You say that you had regular cystitis alot, up to twice a month. Were these cultures confirmed, as in, did they actually detect a specific bacteria? I suspect that you did not actually have bacterial cystitis THAT often, and since orange juice has no correlation with bacteria in the urinary tract, there is no way that quitting orange juice would prevent bacterial cystitis from occurring. It would definitely, however, stop urinary pain that SEEMED like regular cystitis, but was actually IC.

    Endometriosis is a possibility, but seems unlikely. Most women with this have extreme bleeding and extreme cramps.

    I have IC and I always have white blood cells in my urine. This is indicative of IC.

    Pain with pelvic exams is also very common. This goes back to the theory that if there is something wrong in the bladder, the vagina will also become sensitive and inflamed, causing pain with pelvic exams. I counsel young women with IC, and I can safely say that at LEAST half of them have vaginal symptoms, too.

    Antihistamines are a great idea, I recommend them to everyone. The best for IC is Zyrtec every night. This is available by prescription as hydroxyzine, but is a little stronger than the over the counter kind. My bloating doesn't really respond to any kind of diet, so I am skeptical about the raw foods diet. Unfortunately the only thing that helps is not eating, so if I know I am going to wear a bikini somewhere, I won't eat that day.
    Diagnosed with IC in 2005, since then have been diagnosed with an unspecified autoimmune disease, with inflammation in my bladder, colon, left knee, left ear, left eye, lungs and pericardium. Argh!

    Medical research addict.

    Likes: hot baths and naps with cats

  3. #3
    ICN Founder icnmgrjill's Avatar
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    Re: Doctor thinks I have IC? constant bloating etc

    Great post and its very nice to meet you cindog.

    I agree with eyeliners comments but I want to throw something else out too. I notice that I bloat up every time I chow down on white breads and pastries... but if I eat gluten free, I don't bloat at all. I don't test positive for celiac disease but going Gluten free has really helped me with the bloating. I think it's worth a shot too!

    Since your pelvic exams are so incredibly painful, I would immediately request a pelvic floor assessment. That's a sign that you have tight, dysfunctional pelvic floor muscles which could have happened after any type of muscle trauma... maybe even years ago. If you jammed your crotch on the bar of a bicycle, fell on a balance beam, or sustained a muscle injury down there as a child athlete or even a rape, this could manifest as pelvic floor dysfunction now.

    As another IT person, I've found that it's very easy to eat the wrong foods (stimulants and the wrong sugary snacks) when I'm working! Have you tried the IC diet yet. I encourage you to eliminate the strong acids and alcohols like sodas, coffees, teas, green teas, caffeines, citrus juices, etc. etc. If that dramatically improves your symptoms then that suggests that your bladder wall is the source of your symptoms and troubles... i.e. injury/IC. Now I nibble on raw carrots, fresh Apples, Larabars... and I have to say that between removing all the sugary crap and the gluten, my bloating is wayyyyyyy down.

    I also had a laparoscopy to rule out endo and I don't regret that at all.

    Hope that helps.. and don't hesitate to ask questions!

    Jill
    Would you like to talk with someone about your IC struggles? The ICN now offers personal coaching sessions that include myself, Julie Beyer RD on the diet and Dr. Heather Howard on Sexuality. http://www.icnsales.com/icn-personal-coaching/

    Looking for books, magazines & reports on IC? Please visit the ICN Shop at: http://www.icnsales.com: Your ICN subscription & purchases in our shop support these message boards, chats and special events. BECOME AN ICN ANGEL TODAY!

    Please remember that the information on the ICN is provided with the understanding that ICN, its founder, staff, volunteers, and participants are not engaged in rendering medical or professional medical services. We cannot and do not give medical advice. Only your personal physician can do this for you.







  4. #4
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    Re: Doctor thinks I have IC? constant bloating etc

    I am from Germany, almost neighbours! I believe your IC started from BC pills, as mine. Now it is too late, stopping them will not really cure you, but I still suggest to consult your gyno and maybe stop all BC except for condom, because things can actually get worse, if you continue. What can I suggest: let gyno to measure your estrogen and progesterone levels, it can be that after stopping BC you should actually start using small amount of vaginal estradiol cream, I use only pea-size, as I am quite young, 35 yrs, but it has started helping me a lot. I messed up my hormonal system with BC pills as well, already 4-5 years ago started having IC, but until last 2 years did not have any idea what was going on. I just noticed some time ago that I feel much much worse during ovulation and much better during my period really starts, and estrogen is really big part here. My estrogen levels are low by blood test.
    Already without doc you can try adding some organic coconut oil vaginally every night, as well vaginal probiotics, I use Vagisan here in Germany, surely you have it in UK as well. A bit expensive, but really worth it!!!
    I also get Uracyst instillations, read about it, maybe it helps with your symptoms. I used to have very bad belly as well, but after long time Uracyst and lately estradiol cream, it actually started getting smaller and more peaceful.
    And vaginal pain can be true when you are dry... not imagination.

  5. #5
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    Re: Doctor thinks I have IC? constant bloating etc

    Hello -

    I am not sure if I can be of any help but will try - I was diagnosed with IC two and 1/2 years ago, I switched to the IC diet - very helpful. I am not a doctor and would suggest you keep getting medical input from them but in the meantime, a few small hints that helped me:
    1. The pill might be causing your bloating - is a very common side effect to many women. You might want to consider getting off of this perhaps.
    2. Once I stuck to the IC diet and also cut my fat and sugar intake by 75% my bloated belly went WAY down, and I lost weight as well, though I only had maybe 5 pounds to lose to start with - the loss went beyond this!
    3. Just want to encourage you that you CAN get through this time of pain and frustration - just this web site in itself is so helpful for those of us struggling with our lives with IC thrown into them.
    Know I care and will be praying for you:-) - Jonna

  6. #6
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    Re: Doctor thinks I have IC? constant bloating etc

    You have been given some great advice so all I can really add is I agree that for me also cutting back on sugar and gluten helps my bloat go waaayyy down too as well as getting off BCP. 100% coconut oil has helped things down there be more peaceful too if that makes sense. Getting evaluated for pelvic floor dysfunction is a great idea as well. I birthed my son all natural breech and that messed up my pelvic floor and bladder big time. I start physical therapy this Tuesday. Best of luck to you!

  7. #7
    ICN Member cindog's Avatar
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    Re: Doctor thinks I have IC? constant bloating etc

    Thankyou so much for all your responses I will of course continue to see my doctor to continue diagnosis, and I'll let her know all your suggestions (and anything else I find in the forums!) I'll respond to your comments 1 by 1, so as not to miss out anyones advice!

    @Eyeliner128 - I have always had problems with constipation, although regular exercise cleared it up. The past few months I've had problems though as I haven't been able to exercise. It's interesting to hear about it all being linked together! You could also be quite right about it not being cystitis thinking about it - my old dr was a bit rubbish with these issues, and he used to just fob me off with antibiotics (which I was careful not to take unless I saw blood, which wasn't often.) I also agree with you regarding endometriosis - I've spoken to people who live with it, and my symptoms sound very different to theirs.

    @icnmgrjill - I will ask my GP about getting a pelvic floor assessment, thankyou for the suggestions. When I was a kid I used to LOVE my bicycle, and can remember at least 2 incidents where I crashed and hurt my pelvis. In fact, I remember once there was some blood afterwards (7yr old me thought it'd be a good idea to go down a couple of steps on my bike). I should have told my mum at the time so she could take me to a doctor, but I was a really private kid and quite embarrassed as I didn't understand that part of my anatomy! So you may really be onto something there. You're right - it is so easy to eat rubbish in this industry!! Especially when there's so many free cakes and fizzy drinks! At the moment I only drink water and my 1 morning coffee - but I guess I should give up the coffee I will definitely try the IC diet.

    @krist656 - hey neighbour! Did you stop your pill? Did it have any effect on your symptoms? My first thought was to stop taking it, but each month the pain is worse on my 'pill free week' - even when I only bled for a gloriously short 3 days last month. The pain makes me worried about stopping the pill, so I always chicken out I will make a note of the cream and instillations you mention and ask my GP on Thursday. How do you use the coconut oil? Just apply a bit internally? I already use it for so many different purposes - it never ceases to amaze me!

    @JonnaFromNY - I would love to be able to wear a bikini for my summer holiday. Frustratingly, my belly never seems to go away. I ideally want to get off the pill, but I guess I need to get the pain under control first. It's good to hear that the IC diet worked for you - I will have to try it. Thankyou for your helpful comments, I do feel better after reading them!

    @rshell84 - Ouch!! I hope physical therapy is successful for you. I will look it up and ask my GP. Would I need to see a gynaecologist again to diagnose that? I'm scared of going back - but I know I'll have to!!



    After reading all your useful comments, I'm now putting together an IC diet meal plan and working out a plan of action. I'm also going to have to give up smoking, coffee and alcohol (good luck to my colleagues). I'll make sure to write down all your suggestions to discuss with my GP. She's not dealt with an IC patient before, but she's keen to get me diagnosed and treated so I'm happy to have her help.

    Thankyou again for all your advice and words of encouragement, it means a lot x

  8. #8
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    Re: Doctor thinks I have IC? constant bloating etc

    Hello. I'm probably repeating what others have said as I felt the need to reply but was short of time but..

    Your history sounds very similar to mine, and I have jumped through many hoops in the UK to get any sort of diagnosis. I was first sent to a urologist who tried many oab meds as I do have frequency, bloating, and cramping. After two cystoscopies with hydrodistention all clear. I was referred to pain clinic who referred me to a gyne for An endo screening. I do have discomfort on examination. She said everything felt normal and that the discomfort did seem to be coming from my bladder. She requested an ultrasound and said we could do a laparoscopy if necessary. The ultrasound was clear. My Uro then requested full urodynamincs which were completely negative for oab. I was then started in cystistat in still which seemed to help. During this time I developed sciatica and was started on amitriptine, which really helped with the frequency put not the cramping. Last week I saw a pelvic physiotherapist (the referral took 5 months) who confirmed that i have pelvic floor dysfunction on every level. labia, hyem, and all 3 levels of my pelvic floor. She also thinks my rectal muscle are involved as it would be impossible for them not to be. She also commented on the fact that I have a line between my pelvis and stomach. Apparently this is a symptom of pelvic spasm. She has started treatment although it is to early to tell.

    I don't know if this will help. But I found comfort in the experience of others from the UK. As we are not blessed with guidelines for IC or any pelvic pain conditions treatment pathways are rather sketchy.
    I have now been diagnosed with IC via elimination and extreme PFD and hope that the joint treatment will be successful. I'm pretty sure there are many similarities between our symptoms that I have managed. White blood cells, red blood cells etc in recurrent negative UTI samples. On average 7-8 a year since I was 7.

    I hope you get answers soon. It sounds as though you are on the right path early. It took me 3+ years. Any questions I'd be happy to answer.

    Jess
    Last edited by j.mcloughlin; 06-02-2015 at 07:27 AM.

  9. #9
    ICN Member cindog's Avatar
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    Re: Doctor thinks I have IC? constant bloating etc

    Thankyou Jess, it's great to hear your experiences. I see you're in Norfolk - my parents live on the coast there Beautiful place.
    I'm sorry you had to suffer for so long before getting the right diagnosis. I'm know I'm really lucky that my GP is doing whatever it takes to get me diagnosed and really listens to me. A lot of GPs seem to try and get you out the door in 2 minutes :/ What sort of treatment is involved in your physiotherapy (I hope it's okay to ask)?

    I'm really glad I found this forum - everyone's so friendly and helpful!

  10. #10
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    Re: Doctor thinks I have IC? constant bloating etc

    Hold on to that GP, I originally had an amazing one; and then he moved out of the area!
    Many people will agree when I say waiting is the hardest part, but I now seem to be making huge waves in progress! And with all the channels your accessing you'll surely get on top of it quickly and can get back to normal life!

    I have only recently started the pelvic physio. I have had one 90 minute session. Treatment me for me so far, has involved an initially uncomfortable 45 minute internal. The physio tried to gently manipulate the muscles and each point and gave me an exercise to do every evening until I next see her. (Which was supposed to be two weeks from the original appointment but unfortunately it has been pushed back until mid July!) They were very patient and gave me time between each new pressure point. It was a very strange experience, but one I will happily do again and again if things will subside!

    One thing they really preached was relaxation techniques. I don't know if you are quiet a tense person? I didn't realise I was but after my session I am now very aware of it. Apparently a lot of muscular tension that we have can be relaxed by utilising slow controlled breathing and allowing your jaw to completely relax. It's quite amazing how everything is related. She pressed on places internally and I felt light spasms in my abdominal muscles on the opposite side of my body!

    Also noting that you were quite physically active until recently, did you weight train at all? Body weight or actually weight? Squats, lunges, deadlifts can all cause tension within the pelvis and lower back. Putting pressure on the pudendal and sciatic nerve which can cause/influence bowel & bladder symptoms.

    Also someone mention antihistamines, something the IC specialist nurse here recommended was cimetidine. It is actually a gastrointestinal drug of some sort but used off label to treat bladder symptoms. It is supposed to block mast cells in some way and therefore reduce inflammation. It is something I tried which had little to no side effects. It may be worth a go?

    This forum is definitely a great scrutch! There are sooo many things I wouldn't have known to try or ask about if it was for our international friends.
    Best wishes x

  11. #11
    ICN Member cindog's Avatar
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    Re: Doctor thinks I have IC? constant bloating etc

    If she moves I'm following her!!

    I'm terrified of having another internal exam - it genuinely felt like I was being stabbed as soon as she put it in, so they couldn't continue. You'll have to let me know how you get on!

    Hmm I wouldn't be surprised. I get stressed out quite easily from work etc and I've always had problems with anxiety (luckily nothing that stopped me working and living a normal life).

    Yes, I used to do circuit training which was quite intense, TRX (which uses bodyweight) and weights at the gym. I started to really enjoy it (strange for me!), and then 6 months in this started. I tried to continue in January but I just couldn't keep up. Do you have any suggestions for alternative exercises? I wondered about pilates/yoga/body balance, but unsure if it's suitable.

    I shall definitely give it a go, thankyou so much for all your advice

  12. #12
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    Re: Doctor thinks I have IC? constant bloating etc

    When the gyne did the internal was it with her finger or a speculum? Because the physios use 1 finger and lots of lube! I understand, I have pain with intercourse and haven't been able to use tampons for what feels like an eternity!

    If you really struggle I believe they can prescribe diazepam to be inserted vaginally. Quite a few of the women on here have said they have tried it and it really helps. Or they may be able to suggest a suppository for pain. If speak to you gp, or the gyne when you next go. See what they suggest.

    I used to do quite a lot of circuit training and weight training.. Because I serious hate cardio. And it was great feel like you were progressing and getting stronger. I started yoga in February-March as an alternative. I found it relaxing, but still intense enough! Some of the stretches can still be a little problematic but if you go to a class and speak to the instructor they should be able to suggest alternatives! There's also hot yoga, which I think is bickram (definitely not spelt right). The heat is supposed to be good for helping to relax the muscles, and it's meant to increase the intensity of the session! It might be a good alternative!

    Jess
    Last edited by j.mcloughlin; 06-03-2015 at 06:29 AM.

  13. #13
    ICN Member cindog's Avatar
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    Re: Doctor thinks I have IC? constant bloating etc

    A spectrum, apparently the smallest she had. I've never been able to use tampons either! Last year I bought some mini ones meant for young teenagers, and I couldn't even use those!

    I'll ask about that, thankyou. I'm lucky that my partner's really patient - but I still have a nagging feeling that it's going to affect my relationship somewhat.

    Same! I loved seeing myself get good at it. I was never active before last year, but found I really loved the classes I was doing. I'd love to be able to go back one day. I'll definitely have to look up hot yoga.

    I'm writing down everyones suggestions for my appointment tomorrow, and also making a meal plan from the gluten-free IC recipes on this forum. I guess I'd better learn to cook...

  14. #14
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    Re: Doctor thinks I have IC? constant bloating etc

    I suppose it depends on the gyne then because the one I saw didn't use an instrument.

    Good luck for appointment tomorrow. Keep us posted.

  15. #15
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    Re: Doctor thinks I have IC? constant bloating etc

    Interesting about the gyn internal exam. I had gotten to the point I dreaded internal exams, very painful and they hurt for days afterward. Now I am using estrogen suppositories and my most recent internal exam (with a spectrum) I barely felt it and had no pain after. Could you ladies have an estrogen deficiency like me? have you had your hormone levels checked? Jo Ann

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