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Unread 04-05-2008, 06:35 AM

Hello everyone,

My surgery is May 15th. I am currently taking Norethindrone twice a day, once a day doesn't work, I was still bleeding, still had severe uterine cramping and my crotch pain was unbearable. Now that I bumped up to two a day, I feel so good that I am wondering why I am having surgery.

Another benefit is that I am clear headed, articulate, a creative problem solver, my career is going skyward because I can think and I have all the right answers. My physical stamina is through the roof. Before I started taking this stuff, I felt like my brain was in a fog, I was easily distracted, couldn't focus or concentrate and didn't understand what people were saying. I was depressed and felt like killing myself, though since I couldn't say why I never tried it. I cried constantly and when I was asked why I couldn't explain. This doesn't fly at work.

Last September when I initially ended up in the hospital needing a transfusion, I was given this same drug, but only took one a day with the same positive effects. I was as I am now, unstoppable.

I do plan on discussing this with my doctor, but has anyone had this experience? I am scared to death of not taking this stuff anymore. I also don't understand why I now need to take 2 a day instead of just one. I am guessing it is because of hormone fluctuations, but you would think I would need less to counteract less estrogen...

Anyway, I would rather die than give up the way I feel now. Can anyone shed some light on this?
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Unread 04-08-2008, 05:55 PM

I think that talking to your Dr about the way you feel is a great idea. I don''t know why you are having your surgery, but maybe this is a better solution for you.

Unread 04-12-2008, 05:33 AM

No, I think the surgery will be necessary, though I am completely comfortable sitting most of the day since I doubled up on the progesterone, the end of the day is uncomfortable. I was told that if they were to take out all my fibroids, there may be over 100 of them. They are all within the uterine muscle tiissue. My doctor is guessing that the pain I am having is caused by one big fibroid that encompasses my entire uterus, right to the top of the cervix and sitting pushes this tumor down onto my pelvic floor. I was told that this fibroid is the reason my cervix will need to come out too. It would be too risky to try and save it. I was also told that it is degenerating, that was what the discharge was all about, but that seems to have stopped also.

I am just super concerned about slamming into surgical menopause, I know how I feel when I am not on anything, my hormones have been screwed up my entire life, so I have been on BC pills off and on for 30 years. I always feel fantastic on them, even though the bleeding would only be controlled for a few months before I had to switch.

I have read some horror stories about surgical menopause, but I don't know how much of it will apply to me. My sense of self is not tied to this pointless organ, don't have kids, never wanted them, so if I am depressed post-op it will be chemical or hormonal. I just don't want to screw around for years trying to get balanced again.
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Unread 04-15-2008, 10:10 AM

I had a similar experience with another drug for another problem. It gave me tons of energy, my problem was "cured" as far as day-to-day life was concerned, I grew my businesses, I was flying.

But the side effects crept up on me. It was meant to be used short-term, and I used it for so long that I was unable to wean off it, as is usual practice with this med, so while my medical issue was under control, it wasn't in remission, and it would never be. I had to go for bone scans to make sure it wasn't giving me osteoporosis, and the doc started worrying about my liver processing this stuff for so long.

So I went off it anyway, the disease I was taking it for came back full force and I had terrible withdrawl symptoms for months afterwards. I scaled back one business and put the other on hold completely. The only thing that kept me going through it was the thought that I'd have to start all over again if I went back on the med.

Through other methods of treatment, I am now in remission, and don't regret going off that med, although it was one of the hardest things I have ever done. My feeling is that you're going to have to get off that med sometime - it will be tough whenever.

On the positive side of things, I'll tell you that menopause has been pretty good to me. It did take a while to get balanced, and I'm still tweaking it, but overall I feel much much better than I did pre-hysterectomy. My ovaries were wacked out and I had ridiculous PMS in addition to endometriosis pain.

Only the strongest meds worked to control my pain, and, like the other situation, I couldn't stay on them forever without risks. Doc and I decided that my ovaries would be removed as well, and I feel like "starting at zero" is easier to manage than trying to deal with fluctuating hormone levels.

Truly you never know how it will affect you - everyone is different.
Unread 04-15-2008, 04:02 PM

On the bright side, you seem to have a good response to hormonal therapy. That could bode well for you if you have to lose your uterus and ovaries. Don't know if it is a possibility for you to keep the ovaries-have you looked into it?
Unread 04-19-2008, 05:38 AM

I was told that I would lose the ovaries, because I am almost 51, and because they may just fail anyway. I am going to bring this issue up again. My ultrasound showed that I may have had a cyst on one of them at some point, so maybe they are useless. Regardless, looking at my history, I was hormonally imbalanced in utero as far as I am concerned. All the years I was on BC pills, life was grand, whenever I would stop, every symptom in the world would return.

I have a list of 30+ questions for my doctor at this point. I am going to emphasize the positive effects of progesterone to her, and if for some reason she won't prescribe I will go out and get the Pro-Gest cream.

It is all very logical to me, life is not worth living for me if the quality is not there and I certainly don't want prozac, when all I need is progesterone. Sitting in my office at work and crying for no reason that I can articulate is not an option. That is what my life is like without it.
Unread 04-22-2008, 12:52 PM

Good Afternoon....I have a TAH scheduled for May 7th. In the meantime, my doc has prescribed norethindrone (5mg) 2 x a day to stop the bleeding. After reading many threads, my thought is why aren't more women using this pill has a way to make their bleeding and other symtoms more tolerable while we wait.
artist2008 - now that you mention it, I do have alot more energy (thought it might be just nervous energy) and feel pretty good overall. The only real problems I am experiencing is I can feel my fibroid growing like a weed and uncomfortable now to sleep on my belly, I am in the bathroom every 10 mins and not sleeping well. I will tell you that I skipped two pills and my mood changed dramatically. I was very "sad" and ready to kill people. Maybe withdrawal? I guess we need to consider ourselves lucky that we are able to be somewhat comfortable waiting for our big days!!
Good luck to you!!
Unread 04-27-2008, 09:29 AM

I had to end up in the emergency room needing two units of blood in order to discover progesterone. If I hadn't been so anemic, I probably would have had an emergency hysterectomy instead but they needed to stabilize me first. I swear you just about need a medical degree to be able to manage doctors. It is sickening.

I was wondering about the growth, my abdomen looks larger than usual, but my clothes fit fine, I know in theory estrogen and progesterone are considered culprits in the growth of fibroids. I didn't notice this last time, but last time only one pill a day did the trick. It has also taken away all the uterine cramping, thankfully since we have to stop taking ibuprofen way too soon. That would be miserable.

I have also noticed that foods that make me slightly nauseaus like egg yolks, that I have tested positive for as far as having a mild allergic reaction to, do not make me nauseaus anymore, I also have way less gas from certain vegetables.

What I am really hoping for is that after the surgery, I won't need it because the estrogen will also be gone. I was told and did exerperience extreme depression and thoughts of suicide and lethargy and feelings of stupidity when I stopped taking it last time. Lasted for about 3 weeks. I was told it was withdrawal. Wonder how bad it will be this time. May have to check into rehab.

Good luck with your surgery. The date is coming fast. Something that has helped me was to lump the anti-hysterectomy people/fanatics in with PETA and the right to lifers as far as being extremist. There are good reasons for this and we are not mutiliating or castrating ourselves. At first, those were the people that were freaking me out the most with all thier gloom and doom. I have chosen to keep my head, and rely on logic and reasoning to make this choice.

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