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Totally discouraged -- about at the end of my rope Totally discouraged -- about at the end of my rope

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Unread 01-08-2001, 08:25 PM
Totally discouraged -- about at the end of my rope

I went to the doctor Friday and tried to explain my symptoms (again). Sometimes I feel like he just doesn't listen. I am sooooo tense and irritable and depressed. My whole body hurts -- especially my face, because of the tension. Anyway, he upped my Estrace to 2 mg. per day from 1 mg. and downed the progesterone cream to 50 mg. per day. I feel like I'm about to jump out of my skin.

I know you're supposed to give things a couple of weeks to settle down after you change meds, but I don't know if I can take 2 weeks of this. I'm so tired of experimenting with this whole HRT thing. What is wrong with me? Maybe it isn't even hormone related -- maybe I have something else going on. Or worse, maybe it's all in my head!
I NEVER felt like this pre-hyst, though (10 months ago tomorrow). But maybe it's time to just go back to a regular MD and try to rule out everything else.

Is 2 mg. of Estrace a high-end dose? I've read on this site that some women do well on that dose, and a friend of mine takes that dose and does very well. I did some more reading in Dr. Wright's book today and he talks about how well everyone does and feels on Tri-Est. Well, I didn't. And I'd like to. But I was taking it orally. Maybe I should try the cream? The estradiol patch is out because I'm allergic to adhesive and I broke out badly at the patch site.

I'm sorry I'm rambling here. I'm just very down and depressed. I don't want to live like this any more and I don't know if I can. And no one is helping me. What should I do???????
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Unread 01-08-2001, 08:43 PM
Totally discouraged -- about at the end of my rope

I am back on 3mg estradiol (same as estrace) and need it badly, and am back on prometrium ( oral progesterone). feel great...the cream does not work for me, I need too much.
the Climara patch did nothing for me, took it off yestereday and still have huge red mark...lovely.
IT IS NOT IN YOUR HEAD, IT IS IN YOUR BODY. Explore the progesterone option, it is the answer for me, along with high dosage estrogen, today I had a massage by my favorite therapist...he is hot, and I swam again, third time and am post op day 12.
I am very thin, and very small, and estrogen is absorbed in fat, so thin women need a lot, it is not absorbed as well in us. So, don't give up, just get advice from this wonderful site, and let us know what is up, ok?
Unread 01-08-2001, 08:46 PM
Totally discouraged -- about at the end of my rope

{{{{{Jillio}}}}} So sorry for you. I know the "hit and miss" and "trial and error" methods for finding the right mix can be so frustrating - but many times it is really the only way. Maybe a hormone test will help. They have not been terribly accurate with me - but maybe it can help point you in the right direction.

I take 2mg of estrace and have no problem. Why was the progesterone decreased? While a small minority of women do better on small doses (like me) many women find they need 100mg or even more. Progesterone can sometimes calm that jumpy feeling you're talking about. I, also, did not do too well on tri-est.

Have you considered a change in doctors? If you get frustrated because he's not working with you - maybe its time for a change.

Good luck to you!
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Unread 01-08-2001, 08:57 PM
Been There, Done That

Hi Jillo,

I dont know you entire story, but I can tell you it takes a while, It took me 1 full year to find the right doctor, and the right hormone cocktail, then another month to get it all into my system....What works for one , might not work for the try to hang in there and dont be afraid to find a new doc or to try new hormones...

After three doctors and one very fine lady doctor who specilizes in surgical men-0-pause, I finally ended up wearing two patches (changing them twice a week) and using a rx compounded testostrone cream, and using progestrone 900......whew......but hey, I feel like a million bucks now, and feel better at 36 than I "ever" have in my life.

Hugs & Laughter from me to you!!!!!!!

Love Pooh
TAH/BSO 4/1/99.....Texas
Unread 01-09-2001, 06:13 AM
Totally discouraged -- about at the end of my rope

I'm so sorry you're not doing well. Unfortunately hrt is not a one size fits all. I've been stumbling in and out of the jungle for 19 months now. You have to keep trying, if you don't you won't find any relief. Some of us have a harder time finding the proper mix than others. But once we do it will be well worth the trip.
It is NOT in your head and you are NOT crazy. These hormones are a powerful force. Keep trying Jillio, you WILL find your proper balance. We're all here shining our flashlights as you search for your path out of this place we call the jungle.
Hugs :-)
Unread 01-09-2001, 07:18 AM
Totally discouraged -- about at the end of my rope

Thanks all for responding. I actually did change doctors to this one in July from the one who did my hyst. Since I'm on an HMO I don't have a lot of options with doctors unless I want to pay all my costs out of my pocket. And this doctor was the only one with my HMO who seems to do anything with menopause and hormones. My other doctor wanted to just slap me on Premarin and keep me on it even after I did so badly on it.

Anyway, I was kind of irritated at my visit with my NEW doctor on Friday. I waited and waited, then finally got into his office where I waited some more while he ran in and out seeing other patients. Finally he came in and sat down and I had to wait some more while he listed to all his voice mail messages on the phone. Then when he finally was ready to pay attention to me, he acted like he didn't have time because he kept looking at his watch (by this time it was after 5:00). Then when he listened to my symptoms he said that sometimes progesterone can cause PMS-type symptoms in a small percentage of women and he thought that might be worth reducing the dosage. And since I'm still having mental fog, vaginal dryness, and some hot flushes, he upped the Estrace.

But here's the kicker -- he told me maybe I should consider seeing a counselor to deal with the stress and tension in my life, and maybe I wasn't "ready" to have the surgery when I did! (Like I wasn't "ready" to not deal with severe endo pain every month of my life!)

I'm sorry, but I never had this kind of tension and felt this way before the hysterectomy, but after I left I started to feel like maybe it WAS all in my head. I'm sure it isn't, but I sure do get irritated at doctors who don't know how we feel and sit there and try to rationalize it away. (I feel better after getting that off my chest). I also felt better after I got home and told my husband that. He about hit the ceiling and said he could tell it wasn't in my head and I shouldn't listen to any suggestion that it was.

But anyway, even though I was extremely upset when I left his office, my doctor IS willing to experiment with different hormones, including compounded prescriptions, which, according to my pharmacist, is somewhat unusual in the area where I live.

So I guess I'll hang on to this regimen for a couple more weeks and see if things will smooth out. If they don't, you can bet he'll be getting a phone call from me!

Thanks again for listening. Sometimes just knowing there are other people who can empathize really helps. (Sorry this is so long!)
Unread 01-09-2001, 08:09 AM
Totally discouraged -- about at the end of my rope

Ah Jillio, I can most certainly empathize with you. I've been to about 5 or 6 or 7 or 8 (actually I've lost count)different docs since the hyst. The last doc flat out told me that if I didn't want to take premarin that he wasn't the doc for me Dh happened to go with me for that appt and he was absolutely flabbergasted at the treatment I received. At least he was able to see that I wasn't crazy.
Another one said he couldn't help because I didn't want to take synthetic hormones. These docs supposedly were "experts" in the field of hormones. Well, obviously I MUST have been misinformed. One of the docs I went to was obviously upset that I had so much information and I wasn't just relying on what he said. So, I'm still searching.

Good luck Jillio, together we WILL find our way out of this jungle.

Hugs :-)
Unread 01-09-2001, 11:39 AM
Totally discouraged -- about at the end of my rope

I'm 2mons. post TVH/BSO. My doc placed me on 2 mg of Estradiol, then upped it to 3mg. because of symptoms similar to decreased estrogen. Then changed it to Cenestin 3 mg. On my own I lowered the dose to 1 mg. then symptoms were gone. Now I am back on 1 mg. of estradiol, have NO hot flashes,mood swings, painful breasts, headaches or chest pain. Tried progesterin (spray 6mg) but that made things worse for me not better. So far the 1 mg. is all I need. Do have to discuss possibly the use of testosterone. Libido is nowhere to be found, have not seen it in the last 5 years. My DH loves me anyway. Good luck. This probably doesn't help much, but it really does say that we are all so very different. Take care...denise
Unread 01-09-2001, 09:15 PM
Totally discouraged!!!! Been there, done that!!!

Hi Jillio,

I have had an awful time trying to get the right doctor and I know you feel like you may be going out of your mind, but trust me your not, and keep looking.

My OBGYN that did my complete hyst 07/05/00 was a wonderful surgeon, his bedside manor SUCKED, but I have had back aches that hurt more than what I have said for months was the easiest part of the whole process. (The surgery!!) Getting the HRT correct has been a different story. The OBGYN sent me to my family doc, and the first question I asked was, "Would it be wrong to think that a few blood tests to check my hormone levels would help?" Needless to say that didn't set real well, it never has, when I know more about what I am going thru than they can possibly get in a 15 min appt. but blood work they did, finally. He said he wanted me off my current HRT for 2 weeks. (Ya Right) I made it from the 26th of Dec. to Jan. 4th 2001. Called the office in tears and said I am not going to make it 2 weeks, and they took blood and started me on Ortho-Prefest that day. I had told them if he didn't give me something I was starting on what I had left over from B-4.

They called me today at work, and yep, sure enough the nurse said I was menopausal!!!! HELLO!!!!! Brother, I needed that laugh. Anyway, I just wanted you to see they all play games and you DO feel like you are going nuts, but I am feeling better and more blood work is on the way here in about 30 days to check the levels again. Maybe you need to make some suggestions, and if they don't listen ask someone else. Sooner or later you will find that 1 doctor that GETS IT!! Please don't give up, I 'm not sure how low my levels were, but from the voice of the nurse, I'd say LOW. I could feel it getting worse every day. By the way this is my 3rd different script since my surgery.

I'll leave you with this last little story. My husband and I are farmers. A few years back we had a young sow, she was already to give birth to a new litter of pigs. We put her in a nice pen, fresh straw, everthing was perfect, so it looked, well she had her 1st piglet and I'm telling you, something just clicked in her little brain and as soon as that little pig got to the dinner plate she jumped up and killed it. Along we every pig afterwards. I never understood how she felt until this summer! Thank God my for my wonderful husband and family, I truly don't know how I could have gotten thru this with out them!!

One last thing, I do think my family Doc is gonna be alot more willing to make adjustments in my meds. If not there is a specialist in another town, not to far away. I know from talking to alot of women, this is not ok, and after what I have been thru this year I am not settling for anything less than feeling great!! Good Luck!

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