Hi ladies,
It is nice to come somewhere where others will understand what you are going through. I also belong to a heart valve forum where they have been a tremendous help. I'm sure everyone here will be great too.
My story is long but I will try to shorten it up.
Five years ago, seven months after having my second daughter, I had open heart surgery to repair my aorta and replace my aortic valve with a mechanical valve. I was 34 years old then. After my surgery I was told that because of being on the heart lung machine that my entire system was shut down and then basically rebooted. I was told that my hormones would be out of whack and that I may even feel like I was pregnant again. Somewhere along the line I kind of remember someone telling me that the surgery may end up sending me into an early menopause.
The first couple years after my surgery I had very very heavy periods with lots of clotting. My periods lasted about two weeks and then I would get them about every 23 days. I thought this had to do with being on coumadin, which is a blood thinner. I need to be on it for the rest of my life because of the mechanical valve. Coumadin thins the blood and decreases the chances of blood clots being thrown from the valve.
I actually had gone through all of the test to have an ablation done to control the heavy bleeding because it was starting to keep me from doing things. I ended up not having the ablation done because shortly after the tests were done I noticed additional changes to my cycles. Some months were heavy and others were lighter more like a normal period. They also didn't last two weeks anymore. Sometimes just a week and a half. I may bleed for a few days, lighten up and almost stop, pass a large clot and start bleeding again for a few more days. I also ovulate sometimes while I am still bleeding from my period. Every month is so different. I never know when I'm going to get my period. Sometimes it is every 23 days, 26 days, 18 days or even 30 days.
I have just about every symptom listed for perimenopause. Night sweats, sometimes just my lower body sweats. My gyn told me that that is very common. Migraines, which I thought were due to the OHS but now may also be due to peri. Some other symptoms include the following...tender breasts, creepy crawly feeling on my skin (this one just started recently), lightheadedness and off balance sometimes, moody, anxiety (have suffered with this since in my 20's), more pms symptoms (I never used to suffer from PMS) like cramps and fullness, starting to wake up more in the middle of the night and can't get back to sleep, peeing more in the middle of the night (usually only during certain times in my cycle), urinary type symptoms (like having UTIs and also an increase of UTIs), clammy hot feelings, intense itching around the vulva and inner thigh area during certain times of the month, heartburn, cholesterol levels are worse and weight gain. I could keep going and going.....LOL! The symptom that is bothering me the most right now is the urinary issues such as the increase of UTIs. Over the years they have increased from one a year to two a year to now having them every few months. I have had a complete urological check up with all the tests that would include and everything is back as normal except that I have some cobblestoning in the urethra which the doc said is a variation of normal. When I get the UTI symptoms or the actual UTI I usually get blood in my urine because of being on coumadin. It makes you bleed more and more easily than someone not on it. That usually lets me know if there is an irritation of some sort in the urethra. I am just getting so tired of getting these urinary symptoms. I check my pee all of the time thinking there is going to be blood there. I was getting anywhere with my urologist so I went to see my gyn regarding the UTIs. He thinks that they could definitely be related to the hormone fluctuations. He thinks that I could be becoming more dry and along with the cobblestoning it is making a perfect environment for bacteria to adhere. I am not a big water drinker and he thinks I should drink much more water to help flush out everything. He also suggested the cranberry pills but I need to have my coumadin watched closely because the cranberry will effect how the coumadin works. He has also suggested going on a low dose antibiotic which will also effect my coumadin. He said he can't put me on the pill because of the heart valve and the chance of blood clots. He is checking with my heart surgeon to see if any type of estrogen, even a cream, would be dangerous for me.
Wow, just getting this all out really is therapeutic. I almost feel like crying right now. It feels good to get this out and have people understand some of the things I am going through. I know you guys can't give me any input regarding the OHS and those meds but I am hoping you can help me with all of these symptoms. When I ask my primary care physician and ask if any of this is due to perimenopause he says no, that those symptoms wouldn't occur until I was in menopause. I disagree. I also think that my hormone fluctuations are sending my coumadin levels all over the place. For the first two years after my surgery my PT/INR (how long it takes your blood to clot) were very stable. For the last two to three years they have been all over the place. Needless to say, my pcp doesn't think my hormones have anything to do with how unstable my PT/INR has been.
Well, I have gone on forever here. Sorry about that. I told you all it was a long story LOL!!!!
I guess I just wonder if you all think this could possibly be perimenopause. When I go over the symptoms with my husband he says that yes I sound like I have all those symptoms. It is just so hard not to worry that something else may be going on. Ever since my OHS I think everything is a serious medical condition.
Thanks for listening.
Take Care!
