As promised, a quick update on where I’ve been the last few weeks. Two weeks ago, I went to London to see a lovely consultant who after a cystoscopy (procedure to look into the bladder) under general anesthetic diagnosed me with Interstitial Cystitis, complete with signs of ulcers. As angry as my bladder looks now, I can only imagine had I had the cystoscopy last October, my bladder would have been far worse.
As awful as that diagnosis sounds, I am glad to finally actually be told this is what I have. The photos taken of the inside of my bladder make me wince when I look at them, red and inflamed. I can’t believe it’s taken a year to get a proper diagnosis, but it has, and unfortunately I’ve been unable to go back to work. If you’re diagnosed with this in the US, you’re eligible for disability benefits.
Looking at the statistics of Interstitial Cystitis, over 90% of sufferers are female. Of those, it’s estimated that 1/3 have had a hysterectomy. Women can go into full remission when pregnant. What’s the common denominator here? Hormones. And mine have been all over the place since I ran that 5k.
My wish all along has been to be able to do what’s possible (and very common) in the US – get my HRT custom made for me, bioidentical, based on my own hormone blood profile. I don’t believe that for all people, HRT is a one-size-fits-all solution. It’s like saying that all diabetics should take the same amount of insulin. In the US you can go to a compounding pharmacy with your custom prescription for hormones – the 3 estrogens, progesterone, testosterone, DHEA… to the levels your own body needs as advised by your doctor/consultant. They can even plonk all the hormones you need into a lozenge that looks like a strepsil!
Well, I found a rare find – there is a compounding pharmacy in London, that deals solely with bioidentical HRT. What luck! I am also arranging to have a Skype consultation with the wonderful Dr. Elizabeth Vliet, who has written several books on the subject of hormones, and the illnesses she feels are hormone-driven – IC is one of them. My only road block was that the pharmacy in London would only accept prescriptions from GP’s/consultants licensed to work in the UK. When I called the pharmacy to ask them about this, they said that there was one doctor in Ireland who could prescribe for me – and I was very happy to find that he is based 5 minutes down the road from me in Dublin. Fab!
So although the diagnosis is bad, I know that the only thing that has helped me thus far is HRT. It did get me pain free, but I’ve had a blip in the last 2 months and my hormones aren’t behaving. I await my hormone blood test results with both trepidation and excitement, in the knowledge that between Dr. Vliet in the US, the compounding pharmacy in London, and the lovely Dr. Patrick Magovern in Dublin, I will get back to full health.
I’ll end this post by saying one thing – when you’re not well, you must be your own health advocate. Keep pushing for a diagnosis. If your intuition tells you something (like this consultant hasn’t a clue about female health, or why am I taking the pill yet again when I know it’ll make me feel crap!), listen to it. Sometimes I didn’t, and it was to my detriment. Now I know I’ll get well again, and that’s half the battle.
Here are some useful links:
Dr. Elizabeth Vliet – http://www.herplace.com/ – highly recommend her book “Screaming to be Heard, Hormone Connections Women Suspect, and Doctors Still Ignore” – a very apt title!
Dr. Patrick Magovern – http://www.integrativemedonline.com/dr_patrick.html – a GP who specialises in “unexplained illnesses”. If you want a proper health review, or custom bioidentical HRT made for you, then he’s the person to see.
Compounding HRT pharmacy in London – http://specialist-pharmacy.com/