husband Fibro and interstitial cystiyis

[Fibrofibrofibro]

my husband age 63 today is struggling with the pain of both Fibro and IC even though on duloxetine, mirabegron , high dose Gabapentin , tonne of paracetamol …(hospital will no longer supply the Elmiron pentosan polysulphate). Guys urology in London offered bladder removal or bladder lesion laser - I was wondering if anyone has had bladder Botox and can tell us their experiences?

[Blue-52]

Hu,

I am so sorry your husband is in so much pain. IC is horrible, my doctor told me to take 1/2 teaspoon of baking powder in water. It tastes disgusting. But it helps. It takes the acid out of the bladder. and it honestly helps to relieve the pain.

I was told at the hospital, when I went to have a flexi camera into the bladder about Botox, but I opted out,just my own thoughts, but I didn’t like the idea of something artificial going in me.

I really hope the baking powder works for him, good luck.

[Cat00]

I have IC am currently on Elmeron, although took 4 years before I could get it. I wasn't offered Botox but my Canadian friend had it. She said I should try it, I said I couldn't afford it privately and the NHS weren't keen on it for my kind of problem. She said it only took one round to fix her?I have Botox for migraines for almost 10 years so I'm very comfortable with the idea of it it's just funding it privately is obviously difficult bc I have no earning capacity. I would certainly give it a try before bladder removal however.

Are you on the USA forum "Team Inspire" for IC? It is a very active forum with huge amounts of data and patient experience. I couldn't find an active UK forum so ended up on there. Its been very helpful, Bladder specialist was surprised how well informed I was. You get a lot more out of a consultants appointment when you can cut to the chase I find.

There are men with IC on that forum and people who have had bladder removal.

[Fibrofibrofibro in reply to Cat00]

that is hugely helpful thank you so much for your reply

[Loobielu]

Hi, my heart goes out to you and your husband! Fibro and IC often go together like best buddy's 😕. I have both too. I had 6 bladder rinses privately that really helped me. I now only drink water and milk for porridge and avoid all caffeine (my cryptonite!) and most days I do ok, flares up and down but nothing like it has been in the past. I did find the yucky baking powder solution helped when bad flares or the Boots cystitis sachets. I was never offered the Botox either so no experience there I'm afraid but with IC anything is worth a go! Bladder removal absolute last resort. My step son is waiting for a new bladder, been waiting years. Best of luck x

[Evonne02]

Hello Fibrofibrofibro, I'm so sorry to hear about what seems like hell that both you & especially your husband are going through. Im hoping that a few of us can come up with some ideas that you can try or speak to your gp or consultant about trying. Had no idea what IC meant or was, so briefly looked it up.

I only have 3 things in common with your dear husband, which are Fibromyalgia, the use of Gabapentin and the use of Duloxetine. Its been almost 10 years since Fibromyalgia decided to put me in my place (that's how I personally see it), and I've been prescribed many painkillers and antidepressants over that time. I'm now taking 10mg of Amitriptamiline as the Duloxetine gave me painful spots, hair loss, and lots of itching. The Amitriptyline has proved the best out of the 4 choices I've tried but wasn't even touching the sides when I had fibromyalgia flare-ups. I was told nothing could be done as I take 10mg of Morphine for arthritis & a high dose of Gabapentin also.

I then saw a Tiktok post about what is supposedly the best thing for Fibromyalgia. It is Magnesium Glycinate at a 1200 mg dose which is 2 capsules twice a day. Apparently this is a very low dose as each capsule is only 60mg and people are taking a little over 400mg twice a day.

For me, it has had a fantastic effect as my symptoms are dulled down/masked by the Magnesium Glycinate. But I must admit that I need to lower this to 1 tablet twice a day as I'm just knackered, feel faint & cannot function on the 2 tablets twice a day.

My pharmacist said this means I have an issue with the absorption of salt. Strange as I also have issues absorbing Vitamin D & other stuff, too.

The brand name of it is Wellgard, has a high absorption rate and has 90 capsules in each bottle. It is £6.80p and can be purchased cheaper if you click to follow, and then buy other medication as a bundle pack with this included.

Luckily & strangely for me I've been told by my gp service that they'll add it to my usual prescription list if I find its helpful. This is the 1st time I've ever been helped by a Gp service with my Fibromyalgia.

Please let us know how you get on. All the best to you both 😍

[IMOM12]

Hi, I have botox injections in my bladder and it's absolutely changed my life. I've gone from being completely incontinent and to frightened to leave the house due to the embarrassment, to having no bladder issues at all and being able to socialise when i can. There is a slight chance, if they give you too much it can stop you from being able to pass water, and you would have to use catheters to empty your bladder, but I've never encountered this problem. For me being a 52 year old female who was fully incontinent it was a no brainer for me...... botox all day long.