Advice needed ASAP

Lynda,

?Thank you so much for your kind words.  It was the nurse practitioner who prescribed the Loestrin and she said the had other people who were on Lamictal and were fine (but they could have been on it for Bi-polar and not seizures because Lamictal treats both).  The more experience I have with healthcare, the more I realize that you have to research things for yourself. 

?I have called and left a message for my neurologist to give me advice on how to move forward.  From what I am reading, the cysts are most likely the result of unbaclanced hormones.  If only there were a way for me to easily balance them.  That's why I was wondering if anyone had any sucess with bio idenitcal creams, diet, or other methods.  Thanks again for your support!

Sarah,

So sorry I am just now seeing your response.  Things have gotten crazy around the holidays.  Thank you for your story!  I am glad to hear you have no regrets even though at maybe 15 weeks out now, you are still a bit weak.  It's to be expected for sure!  I found that loved ones and friends didn't quite understand how much surgery truly impacts you in so many ways.  They expected the moment I "looked better" on the outside that I should be back at the gym and have boundless energy.  LOL. 

I just wish they had taken it all out when they were in there the first time.  It's so frustrating.  I have been given a bunch of different medicines to try and it stinks going through things without any relief.  So in that way, you are lucky you really had no choice.  You cut out the middle junk so to speak!

How is the HRT going? How are you feeling now?

Diana,

You responded at the perfect time!  I am currently going through what you did with the pills.  How are you feeling?  Did you have your ovaries removed as well?  I am guessing you did.

So two weeks ago I started norethindrone (mini pill) to try to stop the spotting. Well, it has been a nightmare.  Although I feel like it has given me more energy, I am now bleeding 100x worse than before.  It ramped up from light to heavy over the last 2 weeks with the last 8 days being like the heaviest day of a period with clots, etc...  I am weak and most of all fed up already with being a lab rat (or at least it feels this way).  However, I know it's not an exact science and everyone is different.  It's just frustrating.  

So I called the doctor and the nurse called back and said when I go to my next appointment (1/18/17) I could try the Depo Provera shot or the Mirena IUD.  She recommended the Mirena because of Depo's side effect of weight gain.  So there are two problems....

1. I believe the Mirena has estrogen which again may quite possibly affect my seizure meds.

2. What am I supposed to do in the meantime...keep bleeding heavily and end up in the ER?  

So I asked if I could add on a progesterone cream in the meantime to see if that helps, she said she would have to ask the Dr. and call me back.  She called back later saying they had called me in a prescription to the compound pharmacy for the cream but when I asked if it was bioidentical she said no (the pharmacist says it is).  LOL  I feel like I'm always having to double check what the doctors say and follow up with my own research which is crazy!  Do you feel like this?

I filled the cream yesterday and began using it.  The pharmacist says he is pretty sure the Dr. meant for me to disscontinue norethindrone and replace it with the cream but I'm still not clear on this.  However, the norethindrone is the only thing that changed when I started bleeding so heavily so I figure it can't hurt to stop it and see if the bleeding lessens?  Any thoughts on that? 

Did the Mirena IUD hurt?  What were the side effects?  What were the series of events that led to your decision to go ahead with the full hysteretomy?  

Thank you and best of luck with your recovery!!

Hi Christiane

Are you sure you don't have fibroids as well? You sound how my mom was with the bleeding. She wound up using everything under the sun to stop the excessive bleeding but wound up with a full hysterectomy as well. 

The Mirena was uncomfortable to have inserted as they have to dilate your cervix a little to insert the device. Honestly, I was thrilled with the Mirena. My periods were almost nonexistent and I'd have a little spotting once in a while. I has no side effects from the device. I had it for about 8 years and I was happy with it. It helped with my irratic menstrual cycle but not with the cysts. I had 4 different surgeries to remove cysts. They were also found on my Fallopian tubes as well. This last sonogram showed the left ovarian cyst was large and had banding inside the cyst that was suspicious. I was sent for cancer screening and thank god it was negative. After speaking with my gynecologist we decided that a total hysterectomy was the way to go. I'm 48, I don't have kids and wasn't starting at almost 50 and the most important factor in my decision was the fact that the cysts were suspicious. My gynecologist said just because it was negative this time it doesn't mean it wouldn't be next time. 

You need to weigh the pros and cons of what you're going through. Do you want to stay on birth control for the rest of your life? Do you want children? I'd really sit and talk it over with your doctor and someone you trust or give you good advice and you trust. Most importantly you have to think about your quality of life. I wasn't willing to take a chance that I'd have ovarian cancer and that was a big push to my decision. It's not an easy decision but I thought about my quality of life.

All the best to you. I hope you feel better soon. 

Diana 😀

Hi Christiane, 

You must be so very sick of all this, especially being used as a lab rat while they try out different treatments on you.  It seems to me that you're dealing a lot with the nurse practitioner, who may or may not be telling the doctor all he or she needs to know.

It occurs to me that you need to see and speak with your doctor directly, instead of having a third party (the nurse practitioner) in the middle of it, because your concerns aren't being adequately addressed.  No one told you whether or not to discontinue taking the norethindrone.  Using hormone replacement is a complex process, because they are powerful substances, and there are intended and unintended side effects, emotional and physical, especially the use of depoprovera and the mirena coil. Seems to me you're being fed different medications and essentially being fobbed off by people who aren't worried about your health.

I'm concerned for you.  Earlier on in this thread I suggested you get a second opinion...please consider it.  There can be life changing medical consequences with HRT!  

Diana,

It sounds like you made a good decision for you.  Your doctor made a good point by saying that basically next time you might have not been so lucky.  I am so glad it was all negative.  Waiting on results is the worst!  I am so sorry you had to have so many surgeries.  This is a fear of mine.

I do have two kids so I am all done there.  I am wondering if the removal of my one fallopian tube has causes a disruption of my hormones somehow?   So the update is that the progesterone cream has stopped my bleeding, praise God!!  Now I have to hope and pray the good times last and when I go back on the 18th that the cyst will have shrunk.  Please continue to send me good vibes and I will do the same for you!   

Lynda,

I am sick of this, but I have good news.  The bio identical progesterone cream has stopped the bleeding!!  I hope it will last and that I will be given further instruction at my follow up on the 18th.  I am hoping to avoid the other birth control options.  The norethindrone was like poison to my body.  Thank God I came off of it on my own.  I will definitely be reporting all of this to my doctor and complaining about the lack of instruction given via phone responses.  The nurses are busy I'm sure, but when they can't give me proper instructions or answer simple questions that is unacceptable.  

I did try to get a second opinion from a local doctor recommended by my chiropractor.  However, I could only get an appointment with her physicians assistant at the end of March!  I am still searching for another option.  

I have learned through all of this that you have to be your own health advocate and research options. We must be prepared with questions and be persistent!!  Thank you for your continued thoughts and good vibes!  Hopefully I will be given proper instuctions on how to use this cream.  For now I am using it daily for fear the bleeding will return!

Christiane,

i am glad your bleeding has stopped. The Fallopian tube shouldn't have disrupted your hormones. The ovaries produce the hormones so you should be okay. You need to speak directly to a doctor. The nurse could not be relaying the information between you and the doctor correctly. If you are not happy with what the doctor is telling you, it's your right to find another doctor. I had a gynecologist that was so condescending. She discounted things I told her and said I was making things sound worse than they were. I got rid of her in a heartbeat! I stayed with my gynecologist up until a year and a half ago when I had to relocate. I was very lucky and found an amazing gynecologist in my new town and a fabulous surgeon. My gynecologist is an older man so he can no longer do surgery because of arthritis so he recommended this surgeon who did my hysterectomy. 

I didn't have prolonged bleeding with my cysts. I think you need to be checked for fibroids. I had some small fibroids when I was younger and I had heavy prolonged bleeding then. I wound up having a D and C done to remove the fibroids. That stopped the prolonged bleeding. You also have to be careful with the excessive bleeding. My mother had what seemed like her period everyday of the month. It got so bad she was hospitalized and needed a blood transfusion because she was bleeding so much. I urge you to make sure you're happy with your doctor and feel they're doing all they can for you. I'm praying you'all have great news on the 18th!! Stay well! 

Diana 😄

Hi, Christiane,

I'm glad that the bleeding has stopped!  You're right.  No matter what is said or implied, no one in the medical field is going to "take care of you!"  You are your own best advocate!  Please hang in there and let me know how you work things out!

Take care! xx