For Women Cd Suffers Only.....
Posted 09 July 2004 - 09:11 AM
Posted 10 July 2004 - 03:00 PM
Posted 11 July 2004 - 05:15 AM
This is all very interesting to me. The year before I was diagnosed, I was having lots of gastro and female issues. After a few months, I realized that the worst gastro pain and trouble was PMS time, so, naturally, I figured there was a connection. Of course, the doctors all said no. I then was told after a lap for endometriosis that my uterus was twice as big as it was supposed to be and he suspected adenomyosis (kind of an internal endo) and suggested it be removed. Just prior to seeing him, I had begun charting (think I only got 2 months worth then we got a puppy and I could never get my temp done in the morning). I had been wondering for at least 10 months if my ovaries were working properly since I didn't feel like I was ovulating properly. Since I was having so much trouble, I went ahead and had the uterus removed in Sept 03, but kept the ovaries because he said they looked fine (although previously I had been told one was polycystic and I had PCOS, but they attributed the lack of cysts on them to my weight loss). Well...here I am now with no uterus and granted, that has given me a great deal of relief, however, now he tells me at my check-up last Thurs that, at 37, I have the vagina of a 50 yr old and that it is very thin, red, and shortened (I had complained of extra dryness down there). So now he tells me he thinks my ovaries have been compromised due to the surgery and wants me to do hormones, which I was very opposed to due to the endo and elevated bilirubin levels and side effects. It is *funny* how doctors come up with something they think is great for you, but they really don't know how your body will react. I didn't find out about the Celiac until April 2004, so I do wonder if they had figured that out sometime much earlier maybe I wouldn't be in this position. If I had known about the Celiac and how it affects your cycles, etc, perhaps I would have waited to be gluten-free for a year or two before deciding to do the hyst. I can't say altogether that I regret it, because, like I said earlier, I have received a lot of benefits (lack of pain, exhaustion, etc) from the surgery, but it just goes to show that no organ can be removed from your body without it affecting other areas. I do wonder if my ovaries are just kind of "sleeping" and maybe with proper supplements and being gluten-free for a while they will wake up and work again. I am thinking I need to try the charting again. I wish I had been doing that my whole life - I think women can learn a great deal about their bodies from it. Just from the minimal amount I did, I could see that I did not ovulate correctly. Best of luck to all of you out there struggling with both female and Celiac!!!
LISA in Wilkesboro, NC
Posted 11 July 2004 - 10:08 AM
The doctor told you the incorrent timing for skipping your period with the Nuvaring. Leave it in for 4 weeks, then replace it with the next one. There is info in the packet you get with your prescription if want to look at it.
I started the Nuvaring in April, after having a D&C in March following a 3-month-long period. My ob/gyn said I probably hadn't ovulated in months. He associated it to the extreme weight loss I have had since going on the gluten-free diet. However, he thinks I have PCOS and possibly endometriosis. I have a giant cyst on my right ovary that just appeared in February.
I also have fibrocystic breast lumps. Has anyone else dealt with those in connection with celiac? My surgeon knows nothing about the connection but i bet a lot of you have dealt with this. I may have them removed in August, but am worried that they will just keep returning if there is a celiac connection.
My PMS symptoms have subsided since I started the Nuvaring. My moods are so much more level now !
gluten-free since August 2003
Posted 11 July 2004 - 10:57 AM
That is interesting about the fibrocystic breasts - I too have had trouble with mine being very lumpy and they got much worse in the winter of 2002, just after I had had my dryness problems and was wondering if I was ovulating properly. Since I had my uterus removed and am not having the severe dryness and my gyn thinks that my ovaries are kind of slowly petering out, I have not noticed as much trouble with my breasts. This is completely my opinion, but I think that the malfunctioning ovaries (like with PCOS) causes such an imbalance of hormones that everything is thrown off. Again, just my opinion, but I kind of felt like maybe I had either way too much estrogen, or more likely, not enough progesterone (or I suppose a combination of the two) and that triggered all the stuff with me with the cysts in my breasts and cycle problems and endometriosis. I brought that up to more than one doctor and they just said these are just typical female problems and they never tested my estrogen level. In hingsight, I wish I had made them do that, but once my FSH/LH levels were ok, they didn't want to pursue anything else. I'm not sure if all this is related to Celiac or not, but I do know my gastro problems have always been worse during the PMS time and before I was diagnosed I was convinced all my problems had a hormonal connection. I still think that is true, just don't know which came first. I've always had psycho PMS, but had never taken the pill. I was getting ready to try it when my bilirubin was still elevated and I couldn't try it and then found out the uterus was messed up, so I had the surgery. I think I'm rambling here, but I'm guessing the cysts in the breasts are hormone-related just because mine are better since the surgery in Sept 03, yet I only found out about Celiac and went gluten-free in April 04. But....perhaps it is Celiac that messes up the hormones and in that way they are connected. I'm certainly not advocating a hysterectomy or anything, but there is a very informative site www.hystersisters.com that has a good message board. It has lots of info on those thinking about hyst's and alternatives and lots of stuff about hormones. Also one that I haven't been to in a while http://www.power-surge.com/intro.htm that is more a perimenopause/menopause site, but has a boatload of good hormone info in it.
Lisa in Wilkesboro, NC
Posted 11 July 2004 - 01:23 PM
Thanks for the info! I would never dream of a hysterectomy but will continue to look into the celiac disease-hormone imbalance link. Luciily, my celiac disease doc is the top guy in the world. I am going to see him again in a month, so will see what he has to say about all this stuff.
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