Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Anklyosing spondylitis in men vs. women

Just a few comments regarding the “AS Patient Guidebook” (https://www.kickas.org/guide.shtml):

Although I am finding much of the information in the Guidebook to be of great assistance, I am surprised at the comments made in the “Anklyosing spondylitis in men vs. women” section. Here is what was said:

“Until recently anklyosing spondylitis was considered to be much more common in men than women. We now have evidence to suggest that women, too, frequently develop the disease. It does seem that some women have a very mild form of the condition which may not, in fact, be easy to detect.”

However, from the comments made by the women on the site, I do not find that women experience milder effects than men. As my Rhuemy says, until recently doctors were taught in Med school that women’s emotions and hormones cause them to complain of aches and pains that originate more in their head than in their bodies. The man’s body is what was used as a basis of all medical studies for decades. For so long, women were considered too emotional to subject too many of the studies conducted.


Even today, it is uncommon for doctors to test women for the B27 gene as much as men are tested when complaining of the same symptoms. I had to research and ask to be tested. The gene is still considered to be a man’s gene. However, if women are not being tested as much as men, how can there really be a fair assessment of who or what sex is more susceptible and which experiences worse effects?

I personally believe that this sort of thinking is exactly why both my mother and I were diagnosed with Fibro and told that our hormones where at the root of it all. Even prior to this we were laughed out of many a doctors office…. Or should I say chuckled out of many a doctors office. Especially in my mother’s case, I feel that the 20 years that she was flat out ignored by the medical community caused her condition to worsen more than it ever had to. What a shame! The woman that was brushed off for so many years has AS, RA, and OA. What the knowledge of knowing this would have done for her! She could have started researching and taking preventative measures early on.


Anyhow, to sum up my soapbox, as I find it hard to accept that either sex is more prone to the effects of AS. Generalizations just aren’t fair or accurate.


Karen

I dont know about the "mild " case for women lots of ladies here are pretty bad off. So am I by age 35 my spine was totally fused and both hips were replace, there is nothing mild about that.
be well, Yoly

I hear ya, Yoly!

Karen

I don't consider laying in bed not being able to get out because I was in so much pain, to be mild.

The sad thing is I had a female doctor who refused to believe that anything was wrong with me, in fact she still "fluffs off" my concerns, it is her ignorance talking of course. This last incident was just like 3 weeks ago.....and the saga continues!

Makes me want to bounce my head off the wall....on second thought that would just cause more problems! My plate is full...

LOL

Amy:)

P.S
I just watched Under the Tuscan Sun, what a GREAT movie. I want to move there! LOL...again!

We are the same age, we have a lot in common.

I think the thing that bothers me the most, is not knowing what is going to happen!

Amy:)

Hi Karen,
Yeah I think the GP I was seeing first up, thought my aches and pains were all in my head. Because I was a mum with three young kids, who were all asthmatic, we were at his office quite alot. I would have days that were so painful I couldn't walk.
Eventually a physio, who had been trying to help me - uttered the words "AS". She told me to get a referral to a Rhuemie who knew what he was talking about! She said she couldn't treat me until I was diagnosed with something. Anyway this particular GP grudgingly gave me a referral but uttered to me that I was just stressed out from having a young family.
Saw a Rhuemie, had a bone scan and the rest is history. Haven't been back to that GP since. I hope that I was a good lesson too him. I still see him around town and we say hello. No doubt he recieved a letter from the Rhuemie.
I think women suffer to the same degree as men do - it seems it from being on this site. I have read that men fuse alot faster but that still remains to be seen. I have had symptoms of AS since I was eleven beginning with a sore knee and I dont think I am fused.
Take care,
from Debra

Amy,

Exactly my sentiments! The general attitude of the medical community has changed some, but it still has a long way to go!

It sounds like you need a better Doctor. What you expressed about how you are treated make me mad on your behalf. I hope that you are able to find someone that takes you seriously soon. In the end, remember that you are the client and if you don’t like the service or treatment you are getting, go to someone else.

And I feel the same way about having dread about what will happen. This is why I think it is so important to find a Doctor to partner with in fighting AS. I am new to the battle as well but as I expressed above, I believe that I will have a better chance of slowing the progression than my mother did. It took her 20+ years to find a doctor that believed her.


Karen

Debra,

I am glad that you found someone who finally took you seriously! Maybe the next time your old Doctor has a lovely woman sitting in front of him in pain he will be wiser about his conclusions.

Take care and keep speaking up for yourself!

Karen

I unfortunatly live in a city right now that has a very EXTREME shortage of doctors, otherwise I would find one that I am happy with. My mom is going to check and see if hers will take me on.

I have some questions I know that I want to ask up front, he after all in essence would be working for me. I kind of like the sound of that...lol

I was really upset that last time I left her office, I felt like I had been "dismissed". This of course totally cheesed me off (I would like to use another word but I am sure you get the point!) She told me she knew several other people that had AS and they were "just fine", and a friend of hers had it, and funny thing...it went away. Well mine hasn't, and I am reminded about that everyday. The irony in that is when she kept telling me I cracked my SI joint (before the diagnosis) she also had a friend that had a cracked SI joint. She has a lot of sick friends. Funny eh?? Yeah, and people get me confused with Julia Roberts!

She doesn't seem to get it...I am just sick of it. I am a "say it like it is girl" and if I have learned anything in all of this (I have said this before) you really need to find out stuff on your own, and self advocate, because I know I am just a number to her, rather $$ signs! Why would she really care??

Upward and Onward, I am inquiring this week about the new doc, we will see...keep you posted!

Amy:)

Good points Karen. I completely agree with your comments.

I have never seen any good studies that show that either sex has a greater incidence of AS or has a more extreme case of AS.

George