Feeling alone and don't have a solution.

Posted , 3 users are following.

When I was 22 I was diagnosed with stage 3 ovarian cancer. I had a hystorectomy and have been on hormones ever since. It has been two years since this happened, and about every 3-5 months my hormones go completely haywire. I gain a ton of weight even though i am very active and eat clean. I get so depressed sometimes I cant get out of bed. The headaches and mood swings are unbearable. I get uncontrollable acne. Everytime I get my levels checked its too high or too low.  This time around my doctor upped both my estrogen and progesterone to .050 of the vivel dot patch and 400 mg of progesterone. It started to get worse. My oncologist told me not to take progesterone at all, so i tried that. Then the hot flashes got worse. So i cut my estrogen to .25 and progesterone to 100mg. It worked for about a week and now all of the symtoms are back. I really dont know what to do. i'm 24. No one my age understands any of this or how I feel. They all think I am crazy. I know most of you arent doctors but I was hoping I could maybe just speak with some of you just to relate. Thanks

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  • Posted

    Ashley,

    I'm sorry you've had to deal with so much at such a young age! I feel bad complaining about my night sweats, back aches, muscle cramps etc...

    You are a very strong young lady and I'm sure you're saying"I don't want to be strong anymore!"

    Do you talk with anyone? A therapist, a priest?

    I also had a total hysterectomy at 49. I am now 51. There was a cancer scare and I had to have an oncologist perform the surgery. Thankfully the pathology tests came back ok

    I did have some problems 2 weeks after with my kidney and had to have a 2nd surgery.

    My thoughts are with you. Please reach out anytime. I'm here?

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    • Posted

      No don't feel bad it is all horrible! I do have a support group that I go to, but it isnt for hormal imbalances, and when I bring it up people don't seem to really get it. That is a great idea though, a therapist would help me so much! At least if I can't change my hormons I can complain about it to someone! haha

      Thank you for reaching out. You are a strong woman and I appreciate your support. 

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  • Posted

    Hi Ashley,

    ?I am so sorry you have had to go through such a thing, especially at such an early age. An awful thing to go through at any age. I didn't have cancer, but endometriosis, a very severe case at age 17, they tried all kinds of meds to correct it.  It only got worse over the years, and at age 24 they did the first surgery, leaving me with only 30% of my overies, and cleaned up my tubes, and coterized all over my insides, then meds to stop my periods for a year.  It worked for almost 10 years.  Then it came back with a vengence!  At 33 I had to have a complete hysterectomy, it was not bad at all actually, I was finally out of pain!!!  Of course they put me on premerin, and I have been on the hormones ever since, I am now 62, and do not plan to go off of them!!  I have tried, didn't work!!  They never tried putting me on the progesterone, as they explained I never needed it, as I had no overies. 

    ?I am wondering due to your hormones, not only being out of order due to the hysterectomy, but also the cancer, then add the two different hormones to the mix could be causing the issues you are having.  I think if it were me, instead of your oncologist, I would try going to an endocrenologist, they know more about all of our hormones, and all of our levels than most of all the doctors we go to. I would be willing to bet, they could get you on the road to where you need to be, get your hormones straightend out, and most likely eliminate the progesterone all together. I think you would feel much better. The hormone pill might work better for you in the beginning, you could always go back to the patch later on if you want to.  I am just thinking, at your age, given you are so young, the pill form would work better for a few years.  The endocrenologist and you could choose the best form for you and your body. I sure wish you luck Ashley. Please let us know how you are doing, and what you decided to do. We are here for you any time. If you would like to talk, or vent!!  You can also feel free to send me a private message any time as well.  Blessings to you!

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    • Posted

      Hi! 

      thank you so much for responding. Youve been through quite the ringer! 

       I do see an endocronoligist, she is the one who has me on both hormones.  But my endo suggested that I stop the progesterone. He referred me to an ovarian cancer endocronoligist because ive had so many issues, but she isn't avaliable until july!! 

      I actually took premerin in the beginning, but I got extremely sick after about a month on it. 

      So do you take only estrogen supplements? You dont get hot flashes or anything? 

      Again thanks for replying. I appreciate it more than you know. 

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    • Posted

      Oh goodness!  Yes, I have only been on estrogen since my hysterectomy. I have always been told once we have had a compete hysterectomy, we only need the estrogen. A lot of women that go through the change at a normal age, are put on both because they still have their overies and everything else.  You should not be having hot flashes if you are on the right dose of estrogen.  I know at first they had me on a higher dose, due to the younger age, and over the years have lowered it.  I am on a really low dose now, but really needed the higher dose when younger!!  My GYN told my husband and I back then, when my hubby asked how long I would need to be on them, he said for life...he was right!!  I have tried going off twice now, just didn't work!!!!  There are women in their 80's that are still on them and refuse to go off. BUT I know women with cancer history may need to go off earlier at some point. Just depends on the woman, everyone is different. I am not a doctor, but never heard of a woman that has had a complete hyst, having to take both estrogen and progesteron.  I take estradiol now instead of premerin. I have been on it for a couple of years, and really like it. They say it has less side effects. A lot of the old writings about hormones and problems are now unfounded, as the information was based on flawed studies. Now the information out there is not as scary as they first came out with. Mostly the issue was with taking both, my mom still has one ovary, and she just could not take the progesteron at all, made her so ill, and bleed, or I should say hemorage so bad, my husband had to carry her into the ER a couple of times before they finally took her off of it!  And it took a trip to the ER for a friend of hers as well, before they took her off. It could be, you just can't take it as well. Your body will tell you!! Their bleeding though, was because they still had everything.

      I say listen to your body, you are the only one that knows it completely!! Sometimes we just have to keep on our doctors before they listen to us! I swear, as many of us will attest to, they can make us feel like we are crazy at times! We even have to get 2nd, or 3rd opinions until we get somone to listen to us. And when you find the right doctor, it's a blessing!!

      ?Keeping my fingers crossed for you Sweetie!!!

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