Interstitial Cystitis

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4 Posts

Roisin McQuillan853  ·  17 Feb 2017

Meddaduv - I'm in Kilkenny, and while travelling by car is a major challenge for me, I'd love to meet up. 

 

13 Posts

meddaduv  ·  16 Feb 2017

Sorry meant to say it was Eamon Rogers I was referred to in Galway. Have said this before n got no response but if ther'es anyone out there in the Midlands - Laois/Offaly/Westmeath/Kilkenny - perhaps we could meet up?

Medduv

 

4 Posts

Roisin McQuillan853  ·  16 Feb 2017

I was diagnosed quite quickly when I collapsed in pain at the gynae office and was taken into hospital urgently.  It took them 4 hours to stop the pain, trying everything until they finally got to the morphine.  Had a cystoscopy the next morning and was diagnosed immediately.  That was almost 2 years ago now, theproblem is getting a treatment that works.  I haven't found that yet. 

 

13 Posts

meddaduv  ·  15 Feb 2017

I found GPs knew nothing of this condition, did all the research myself n then was referred to a doctor in galway who did know something at least... but for me its mainly diet, aloe vera n crossed fingers! Meddaduv

 

71 Posts

cork   ·  13 Feb 2017

Hi anniebee I go to the mercy hospital in Cork for my instills. Sometimes I go every week for six weeks & if things are going well I go every 4 to 6 weeks. Dr Brady is the consultant. It was Dr Eammon Rogers who diagnosed me, but he is in galway now. I would really encourage you to join the facebook group, even if you have to set up a new account & just keep it solely for the group. It's private & much easier for everyone to put up information & ask questions.

 

4 Posts

Roisin McQuillan853  ·  13 Feb 2017

I've had IC for 2 years now. Was diagnosed very quickly when I presented to the hospital in complete agony. Have had 3 cystocopies, 4 instillations, 4 consultants (including one gynae) and am now on anti-histamine and antibiotics.  It has completely taken over my life and I've been through some traumas with it.  I am exhausted.   It's great to read of other people who have been through this. 

 

3 Posts

Anniebee18  ·  10 Feb 2017

Do you know if there's a GP in Ireland that deals with this??

 

3 Posts

Anniebee18  ·  10 Feb 2017

Thank you Cork! So good to make contact! I'm off Facebook right now but will send an email to the address I found on here last night and keep up to date if there's any meet ups!

I might try facebook again just for this group.

Anyway, thanks a mil for reaching out!

 

71 Posts

cork   ·  10 Feb 2017

Hi Anniebee18 I forgot to say that diet is very important so avoid all acid foods. the IC Network have a very good list.

 

71 Posts

cork   ·  10 Feb 2017

Welcome Anniebee18, sorry to hear you are suffering like the rest of us. Please join the facebook page , it is a closed group & you can post any questions you want to ask & everyone shares their experiences . It's under "Irish Interstitial Cystitis Support Group". You get more instant replies & it's only read by the group.

 

3 Posts

Anniebee18  ·  09 Feb 2017

Hi! 

I've just diagnosed myself with this after a year of no doctor being able to tell me what the hell was going on. I ended up in A and E two weeks ago in pain and because the ct scan showed nothing, they sent me home and told me to take ibobrufen....the doc did say my bladder might be inflamed and when the tabs worked for a few days, I knew he was right. I have lost my life in the past few months and it's been so lonely and depressing and no one knows what I'm talking about and I was beginning to go into despair.....and then I came across thsi woman on youtube talking about ME! Oh my God, I feel my prayers have been answered.....and I have people who know what I'm talking about....I'm in Waterford....is there anyone else near me suffering with this condition? I'm 49 this year and I'm pretty sure it was a traumatic event that triggered this. Hello everyone, I'm so glad to ahve found you all!

 

38 Posts

I.C sucks  ·  07 Oct 2016

If you join our FB Irish IC support group you will find there are others in the Midlands.

Elmiron is thought to rebuild the faulty GAG layer (protective lining of the bladder) and can take around 6 months to see noticable improvement. Coupled with instils can benefit greatly. Elmiron is effective for 37% of IC sufferers.

There is a generic form of Elmiron called Comfora which is FDA approved but I don't know if you can get in Ireland. I do know that Comfora are trying to get it approved in the EU currently.

Would you be interested in a Galway meet? If yes message me via FB group or email ic.fowlershelp@gmail.com

Hope this is helpful to you

 

13 Posts

meddaduv  ·  06 Oct 2016

I saw my Urologist in Galway yesterda n he suggested instiiations but am very wary. Also gave me a script for Elmiron...said it v expensive so am not sure. Anyone any comment re side effects? I asked hime if he had other IC patients in Midlands n he said Yes so if there's anyone out there in Laois/OffalyWestmeath or een Klkenny - I'd love to meet up...meddaduv

 

4 Posts

Ayse  ·  05 Oct 2016

I had 18 instillations of a cocktail of Rimso50, heparin, an antibiotic and a steroid.The first one was under general anaesthetic for a cystoscopy  with hydrodistension. In the beginning it was also the first thing to give any relief. But as time went on the pain of the instillations became unbearable. I started to have projectile vomiting trying to hold on to the instillation for the required amount of time. I had to stop them. The Dr said that they worked for 75% of his patients.

 

71 Posts

cork   ·  04 Oct 2016

Hi Ellie, Delighted to hear you are pain free. I've been having the Rimso 50 instill for years, it eases the symptoms but the pain never goes away. I guess everyone reacts to it differently. Delighted to hear someone is getting some relief, long may it continue. 

 

8 Posts

mfitz  ·  04 Oct 2016

Hi Ellie I had 2 instillation of rimso but found the pain unbearable it felt like she instilled acid? Did you have the same feeling?  The nurse thought maybe it was an allergic reaction to it.... she said no one had ever reacted like that before?  I  had pain for 6 weeks after. ... I'm wondering if I had of persisted  would it have helped? ???

 

3 Posts

Ellie88  ·  04 Oct 2016

Hi Everyone, 

I am happy to say that after two years of suffering I have been symptom free for 6 months. My first round of bladdre instillations didn't work and my urologist changed the solution to Rimso-50. The first few treatments were incredably painful but it got easier as it went on. I had 6 instillations and started to notice a big difference. Within a few weeks of finishing the 6 weeks of treatments my pain went away. 

 

13 Posts

meddaduv  ·  03 Oct 2016

has anybody used aloe vera freeze dried capsules? Where did they source? They seem to cost mad money...

Meddaduv

 

38 Posts

I.C sucks  ·  12 Aug 2016

Updates re social meets confirmed.

Dublin

20th August an the Red Cow Hotel @2pm

Cork

21st August at Oriel House @ 3pm.

I will post date and venue for Galway social meet as soon as it's arranged.

All welcome and great to see this happening at last.

 

38 Posts

I.C sucks  ·  05 Apr 2016

We at Irish Interstitial Cystitis and Fowler's Syndrome Support Network would like to sincerely thank Dr Edmond O'Flaherty for his informative talk on the use of LDN as pain control for IC and overlapping conditions.

We are in the process of registering our charity and setting up the website.

We would love to here what you as fellow sufferers would like from the support group eg, newsletters, awareness etc.

You can contact us via ic.fowlershelp@gmail.com or via our Facebook page Irish Interstitial Cystitis Support Network or our closed group Irish Interstitial Cystitis Support group.

We will update on Irish Health as things progress to keep you informed. 

Thank you to all those that attended the meet and for your continued support.

 

19 Posts

ebbies  ·  01 Apr 2016

Hi Sandra,

you are welcome to ask on the IC Network Facebook page too if you like. Hope you get sorted, Eva.

 

13 Posts

meddaduv  ·  01 Apr 2016

Hi - calling anybody going to Support group meeting in Oughterard this Sunday.

If anyone out there in hte Midlands - Laois/Offaly/Westmeath area hading to Galway I am looking to car pool/share petrol.

sandra.keating@gmail.com

Tks

Alex/meddaduv

 

38 Posts

I.C sucks  ·  29 Mar 2016

Irish Interstitial Cystitis Support Network wish to announce our guest speaker will be explaining re the use of LDN (low dose naltrexone) for IC pain and overlapping conditions of M.E/CFS/Fibromyalgia/Autoimmune conditions.

We are meeting at the Connemara Lake Hotel, Oughterard, Galway at 2pm on 3rd April.

Please email us at ic.fowlershelp@gmail.com or contact us via our facebook page if you wish to attend.

All welcome.

 

38 Posts

I.C sucks  ·  28 Mar 2016

Hi Im in Galway and Ebbies and I run the Facebook Page and group.

Email is ic.fowlershelp@gmail.com.

Tell us via email where you live and we can put you in touch with others in your area if possible so as you have local support from a fellow IC warrior.

Mr Flood in Limerick, Mr Creagh at Beaumont and Mr Lennon at St Vincents if thats of any help to you.

Unfortunately some treatments work for some and not for others so really is finding what works for you personally with the help of your urologist.

 

71 Posts

cork   ·  21 Mar 2016

What area/ county are you living in?

 

2 Posts

Naeveh  ·  21 Mar 2016

Hi thanks so much both of you for welcoming me I am greatful. I dnt use Facebook so hope it wil be ok to communicate this way ☺ The meeting  be to far for me to travel but thanks so much.  Do you know of any urologist that knows and specialise in ic? Or what has worked for you to ease flares ? Thanks so much again 

 

71 Posts

cork   ·  21 Mar 2016

Welcome Naeveh, don't forget to join the facebook group, easier to chat to everyone there.

 

38 Posts

I.C sucks  ·  21 Mar 2016

Hi we have a meeting on the 3rd April at the Connemara Lake hotel in Oughterard. We also have a facebook page under Irish Interstitial Cystitis Support Network and a closed group under Irish Interstitial Cystitis Support Group.

Me Ebbies and the others will help you where we can.

 

2 Posts

Naeveh  ·  19 Mar 2016

Hi all I am new and looking to meet others who too suffer with ic. I feel very alone with having ic. 

 

19 Posts

ebbies  ·  10 Mar 2016

Hi Virgo Girl.

I too have IBD (Crohns disease). Am 38 and was diagnosed 5yrs ago with IC.

It can be tough alright. Glad you found us, we have Facebook page too; Irish Interstitial Cystitis Network and an e.mail; ic.fowlershelp@gmail.com

Hope to have webiste soon..do come to meeting on April 3rd if you can. I am doing an interview for Sun Independent Health & Living supplememnt on IC..let ye all know when it goes to print. 

Plan is to have fully registered IC charity here, with toilet 'Cant Wait' cards, leaflets, meetings etc. So watch this space & we always looking for help ;-)

 

13 Posts

meddaduv  ·  01 Mar 2016

Ouch Oughtherard - not Galway city? Much easier for public transport...

Meddaduv

 

1 Posts

Virgo girl  ·  01 Mar 2016

I've had ulcerative colitis for 25 years and was diagnosed with IC last year after a few years of going to doctors with possible kidney infections. It was almost a relief to be diagnosed with something! But during a flare up of IC and not knowing what action to take or which meds to take I don't think like that. Having 2 inflamatory diseases is a lot to manage. I am managing the UC with a very strict diet and now find I must also exclude Dark chocolate and a few other treats I thought were ok up to a few months ago! Feeling frustrated today but my optimistic side says I must get control of this and manage it instead of it managing my days and whether I can work or not..  I am so grateful to have found this discussion group.

 

38 Posts

I.C sucks  ·  24 Feb 2016

The 1st meeting of Irish Interstitial Cystitis and Fowlers Syndrome Support Network is On Sunday 3rd April at Connemara Lake Hotel, Oughterard, Galway at 2pm.

If you wish to attend please email me fitzmc678@gmail.com or contact us via our Facebook page or group.

 

13 Posts

meddaduv  ·  23 Feb 2016

Thanks missefosta. I came across that Pukka Relax tea a while ago n then realised it had marshmallow root in it. I do drink marshmallow root tea as well - I got so bored with peppermint tea. My Holland n Barrett dont stock it n arent willing to order so a small health shop in town gets it for me. Do hope hte IC support grou get together in Galway n that the date works out for us all. meddaduv/alex

 

4 Posts

Misefosta  ·  19 Feb 2016

Flowerpot I totally understand what you are going through and I can feel your pain! When I go through a bad period with lots of flares I can get so depressed and frustrated. When people try to tell me to stay positive, especially when I'm at my worst, it only makes me feel worse. The condition seems to infultrate and affect every part of your life. I have been trying to focus on other areas of my life and not let the condition affect me or who I am, but in the midst of a particularly bad flare up that sometimes seems impossible. 

Like you I have an amazing partner who understands the condition and is with supports me 100%. What we have to realise though is that other people can never understand the feeling, and the pain, of this condition. When I tell other people about it they go 'oww, thats awful. I hate having cystitis'... thier insensitivity and lack of understanding can be so frustrating. I genuinley think we have to try and force ourselves to focus on the people who are understanding and let go of the irritation of people being insensitive.

I have tried the marshmallow root tea and cant recommend it highly enough! meddaduv, I'm not sure which tea you have tried but there is a brand called 'Pukka Tea' and they have a specific tea called 'Pukka Relax Tea', it has Marshmallow Root, Fenel and Cammomile. You can get it at Holland and Barrett and it costs around £2.45 (Sterling as I am currently living in England). I have boxes and boxes stored away in my cupboads and it might be a placebo affect, but I do find that it works!

 

38 Posts

I.C sucks  ·  15 Feb 2016

The Irish Interstitial Cystitis Support Network/Group are planning a get together the 1st week after Easter.

We are also inviting those with Fowlers Syndrome.

Could you let us know if you would prefer it to be on a weekend or weekday.

The meet will be in Co Galway.

You can contact me via Facebook or my email.

Fitzmc678@gmail.com

Thanks

Moira

 

38 Posts

I.C sucks  ·  10 Feb 2016

Flowerpot

The Irish Interstitial Cystitis Support Group on Facebook is a closed group so only members can see your posts.

You may find Prelief helpful which can mean you will be able to eat some of the forbidden foods.

Prelief can be purchased online and some with IC find it a Godsend on the dietary front.

My IC was triggered by hysterectomy.

It may also be worth having your B12, folate, ferritin, homocystiene and calcium levels checked as many with IC are deficient.

You may like to read the information on our network page which maybe of interest to you.

 

13 Posts

meddaduv  ·  10 Feb 2016

O I soooo sympathise and agree with what Flowerpot says - I am heartily sick of people ofering tea or coffee - o but we have de-caf - NO, I cant drink that sorta tea AT ALL n no, green tea is no good either, pl can I have a cup of hot water n I use my own peppermint teabag. Yes I feel really odd woman out. And dont start me on tomates or peppers hidden in restaurant meals! I do find marshmallow root tea does SEEM to sooth - but not always. Also I found a local health shop willing to order and it turns out much cheaper than the Dublin health shop which was the only place I had ever found it. I used drink Chai latte when out in desperation n got away with it sometimes...but then unbidden they will add chocolate or cinammon sprinkles - aaaarrrrgggghhhh! Go away!

Alex

 

71 Posts

cork   ·  09 Feb 2016

Welcome Flowerpot. The facebook page for the Irish Interstitial Group is a closed group & only members can see your post. Yes I too have family & friends who still insist I have tea & coffee. 

 

1 Posts

Flowerpot  ·  08 Feb 2016

I have had painful bladder syndrome for 5 years.  The period between my flares has decreased with the years.  I have been on the boring IC diet for longer than I care to remember. I have tried all sorts of drugs but to no avail as the side effects are dreadful.

I developed Crohns's last year - probably as a result of all the different antibiotics by urogyne had me try even though there was no trace of an infection EVER found.  I can trace all my problems back to an endometrial ablation that I had.  The IC symptoms started within a few days of the procedure.  Now this has been dismissed by my gyne, doctor and urogyne but I know myself when it started.  I read somewhere that trauma to the pelvic region can cause IC.  Does anyone else have this experience?

I have been to many physios specialisig in pelvic floor dysfunction and they can't pinpoint what the problem is. It all seems to be money down the drain.  I can't cycle, run or swim or it irritates my bladder.  Only walking (not fast walking) for no longer than 40 minutes is ok. 

I have become this boring person who has to constantly apologising/explaining why I am not eating this or that, not drinking tea or coffee - socializing is such a nightmare. And I find people - even family members will ask do I want a drink or a cup of tea still!! I find it very difficult not to be irritated by their lack of understanding/caring.  My husband is the only person who appears not to forget that I can't drink alcohol or tea or coffee!! And let’s not forget how ubiquitous tomatoes are in restaurant dishes  - a real pain.  What I wouldn't give for a nice curry!!  It sometimes gets me down all the diet restrictions and I find it hard not to feel sorry for myself. 

The face book group - if you comment or post anything to it - can all your friends on face book see the post? 

 
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