Does anyone have any answers for me?

Hi I have been reading through the many posts and archives for some time now, trying to find some answers to my many problems. The biggest one of course being subjected to the ailments of surgical menopause. To begin with, I had my last ovary removed on sept. 11th 2001. It has been over a year and I still find myself struggling. I am now 34 years old and have suffered terribly, as it appears many others that have posted comments on this message board have. Some days it seems as though I might get through this and then bam! whateever was kind of working quits on me. I have been through premarin (which I hated) estrogel which kind of worked and In the past month have tried triest compounded transdermal cream. I have fought through the system of doctors, and have found little success in getting help. I have added natural progesterone to my regime only to suffer incredible depression instantly upon taking it. I have tried andriol 40mg wk,(a testosterone) capsule available in Canada which gave me terrible stomach cramps and headaches. I have also used Estring and Vagifem to combat a horrible case of urogenital atrophy. My husband and I were unable to have relations for about 7 months. We now can have a limitted relationship, however I am still always sore.What I wear each day is determined by how I'm feeling I can now wear jogging pants or baggy overalls. ( Not exactly a fashion statement am I. ) Most of my hot flashes are now controlled, I always feel like I'm on the verge of alsheimer's although this triest that I've begun taking has cleared thins a bit, but most of all it is the vaginal pain that I just can't get rid of. When I increase the estrogen ( whichever brand,) I get horrible headaches and pains in my legs and chest and a pressure inside my head that feels like a bubble between my ears, This drives my absolutely insane and effects my vertigo. I have tried to get a doctor to perscribe transdermal testosterone because as I've read through the other posts I have learned that this sometimes helps the vagina. I can't get a doctor in my area to perscribe it! I live in Canada and transdermal testosterone doesn't seem to be a common thing. I even found a compounding pharmacy not too far away that makes it. I asked them to give me the name of a doctor that actually will perscribe it and they gave me the name of one who refused saying that all I need is natural progesterone. I feel so alone and angry. The doctors only seem to know how to "Fix us" surgically but haven't a clue what to do with us afterwards. I have gone to 5 different doctors since surgery and feel that my options are becomeing limitted as I feel I am being treated as a hypocondriach. I've decided that because our ovaries are on the inside we appear to be normal on the outside, No one can see our distress. If we were men and lost our testicals modern medicine would fight to find a cure. I don't know what to do, all I do know is that I am so weary of this insisted vaginal burning.


Shellynn

Hi shellynn I'm glad you found us. I'm trying to digest everything you wrote, and also may I ask you a couple of more questions? When you added natural progesterone, how much did you use and what form (oral or cream or other?). How much estrogel did you use, why did you stop that, and how much of the triest are you using? Was the premarin you used oral premarin? I don't mean to interrogate you, I just want to try to understand where you are right now.

I have to confess I'm not as up on what's available in Canada as I am in the States but hopefully we can help you.

If you're doing pretty well on the triest except for the vaginal atrophy/dryness/pain (and that's a BIG "except"), there are a couple of other options you can try besides vagifem, estring and increasing your triest dosage. If you have a really severe problem with dryness, you'd have to raise the triest a lot to take care of it, and that would surely cause lots of symptoms of too much estrogen elsewhere in your body. The vagifem and estring are super low doses of estradiol which are better for maintaining good tissue tone in the vagina than for trying to "fix" an existing dryness problem.

About the most effective thing I've seen for healing a really bad case of vaginal atrophy/dryness is Premarin cream. I know you didn't do well on Premarin, but I'm assuming that was an oral form, which is quite different. When the Premarin you take orally passes through the liver, it breaks down into byproducts, not all of which are so friendly to our bodies. However, the vaginal cream stays pretty much just in the vaginal tissues and is VERY effective at healing irritated vaginal walls. I know because I had to have a second vaginal surgery a couple of months after my hyst and had to use the vaginal Premarin cream to help the cauterized and stitched areas heal, which they did very nicely. I wouldn't use it long term because it's not bio-identical, but you could use it to heal the vagina and then switch over to a lower dose like the vagifem or estring for "maintenance".

Another cream that is probably the second most effective at treating a severe vaginal dryness problem is estrace in cream form. This has the advantage of being bio-identical. So, if you managed to heal the area with Premarin cream and then found that the vagifem or estring wasn't enough to maintain good tissue tone, you might be able to switch to estrace cream and still be comfortable.

I hope this gives you some hope that there are things that might help with the dryness.

About the testosterone, whether it would be good for you depends on what your serum free testosterone level is. If it's not low, it wouldn't be advisable to use the testosterone. Are you having any problems with libido? That can be a pretty good indicator but it's no substitute for the blood test. And the andriol is not natural testosterone, it's a synthetic modified testosterone that's really more suited to men than women. It's quite strong and prone to causing side effects much more than natural testosterone.

So, if you find that after treating the vaginal atrophy you still need testosterone (and the blood test bears this out), you'd be better off finding a source of natural testosterone. But let's cross that bridge when we come to it, OK? One step at a time. And there is also another alternative you could try if you exhaust all the other possibilities... there is a gel that's made with androstenedione, which is a natural precursor to testosterone, and it's available OTC. It wouldn't be as efficient as using testosterone, but OTOH you can at least get it. Also it is expensive -- costs $99 a tube. Still, it would be a last resort.

I hope you're feeling at least a little encouraged here. Please don't give up, you deserve to feel better than you do. Keep posting and letting us know how you're doing OK?
s,
-Linda

Thanks Linda for responding to my post. You asked a couple of questions of which I'll respond to. I was using 3 measured pumps of estrogel. I switched to triest mostly because of the awful pressure in my head especially in my left ear that I would develop instantly upon taking it. When I told the doctor about it he looked at me as if I was crazy. I still find that I have it the same thing with triest if I get too much. It has mostly been trial and error at getting a propper dosage. I also was feeling so much confusion which seemed worse when I had that pressure in my head. I am using between 1.5 mg and 2 mg of triest. The pharmacist said that it was alot more concentrated and that I would need 1mg for every 2 pumps of estrogel that I had used previously. Some days 1.5 seems to work well and then other days I feel deficient, almost as though my body metabolizes it differently on different days. I've had my thyroid checked 3 times since surgery and test have come back normal. The doctors here have been very inadequate in keeping proper records of where my blood levels should be. I wasn't at "normal" levels of hormone for so long before my surgery either, so it is hard to find a gage to go from. I've mostly gone on how I feel. I think that I have found my limit in what my body can handle of either the estrogel or triest. My GP perscribed premarin vag cream which worked well for about a week and then I developed an allergic reaction to it that made my burning vagina burn even worse. ( I wouldn't have believed it to be possible but it got even worse.) I then went to the ring which improved things gradually for about 4-5 weeks and I thought that I had found the answer, then all of a sudden I started burning again. I was then in the total depths of depression because I was told that I had used everything available on the Canadian market. (Estrace vag. cream is no longer availabe here.) I began writing and phoning the company for Vagifem, asking if it would be approved in Canada any time soon, I even volunteered to be a guinea pig in their trials. I was told that so far things didn't look good at it being approved here. I continued in my suffering, finding some but little relief from estring. Then one day my doctor phoned and said that the Vagifem had just been approved. I was so excited. The first few weeks when I was taking it daily, it seemed to work well except for the constant burning I began to feel in my legs upon taking it. I was told to cut the dosage down to every other day. Somedays when I use it, it takes away a bit of the sting and other days it almost seems to make things worse. I am wondering if I haven't developed an allergy to the estradiol. The natural progesterone that I have used has been 2 different brands. One made by a compounding pharmacy here in Canada (the micronized type) and the other was ordered through a friend in the States. The name of the company that put it out is called "Formor." With both kinds, I started with a tiny amount on the tip of my finger, I wanted to start out with very little and work my way up. Truly I felt awful. angry,depressed, aggitated, bloated and developed sore breasts. I figured that maybe I needed more. Big mistake. I feel frusterated. I know people that use the natural progesterone and it seems to help them. They aren't surgically menopausal though-maybe that is the difference. You asked about Libido. I haven't any. I know that I am falling very short is this department and feel very sorry for my husband. I cringe at the thought of him touching me. And I love this man. What used to be a very enjoyable part of our marriage has become a drugery. I know that the Andriol wasn't a good choice for me, but it is all that I could get my hands on. You are so much more fortunate in the States. Things that you can buy over the counter aren't even available to us. They have just recently banned Natrual progesterone from coming across the border from the states, however it can still be compounded. It wasn't doing me any good anyways, but I know it has helped others. Anyways, sorry that this is so lengthy, I hope you can make heads or tails out of it

Thanks, Shellynn

Gosh (((Shellynn))) you have been through so many options already! I admire your tenacity in still searching for something that will work for you.

You mentioned that estrace vaginal cream isn't available in Canada... but could the compounding pharmacist there make up some estradiol cream for you? Or, if you're worried that you might be sensitive to estradiol, how about trying an estriol cream instead? That is very popular in Europe.

One thing that strikes me is that you reacted badly to the progesterone creams. I looked at the ForMor website, and their progesterone cream doesn't actually contain a lot of progesterone. It does contain a lot of other ingredients though. Some ladies find they develop allergies to other ingredients in the bases of their hormone creams. Could that be an issue for you?
If you use a compounding pharmacy you can request a non allergenic cream or gel base, which might be better than the Estrace cream, for example, which some ladies do have trouble with.

Have you tried Vitamin E or Vitamin E suppositories for the dryness? Check out this catalog:

As We Change

They have some OTC natural hormone alternative products that might interest you, and I believe they can ship to Canada. One is the Vitamin E vaginal suppositories. They look like they might be very soothing. They also sell a gel called TestroGel that contains androstenedione, a natural precursor to testosterone. It also contains a little bit of progesterone though, so I don't know if it would work for you or not.

Another possibility is DHEA. It's available OTC in the US at places like GNC and even some regular drugstores in the Vitamin section, and most health food stores. Lots of male bodybuilders use it to increase their testosterone levels (often they use too much, but that's a whole other thread). It's not the ideal solution but if you can get it and there's nothing else available, it might be worth a try.

I wish I had more alternatives to offer you. I'm going to look around and try to come up with some other things you could try. Meanwhile, keep posting and letting us know how you're doing and what you're trying, OK? I'll keep my fingers crossed for you.
s,
-Linda

Hi Shellynn:

I am so sorry that you are having to go through all of this. When I read your post, I thought of myself so much. I really had a very tough time after my hysterectomy. I tried just about everything on the market and nothing helped. It seemed I was getting deeper and deeper and felt like I was about to die. Infact, I just couldn't imagine what it would be like if I had to go the rest of my life feeling that way. At that time, I really regretted having he surgery. Finally, I found a wonderful dr. very knowledgeable in hormones and he knew right a way that I was one of those women who could not take just anything. He started me on estridol injection, very slowly, and within a day or so I was feeling just wonderful. I have been getting the injection now for a year and a half and have had no side effects and feel just wonderful.

I do, however, take my supplements. They, I feel, have added to the estridol and have helped me a lot. The only area that I fell that I need some adjusting is libido. I have an appointment to see him in January and he probably will test my testestrone level and hopefully start me on some to see if that will help improve things.

My husband has been very understanding, but I am wondering how long he will understand.....I am not ready to give up that part of my life, just yet.

I know that many women here may not support the injection, but it worked for me and I feel like I would kill for it. (Just kidding of course).

I do hope you will find some relief soon. I will keep you in my prayers. All of us are here for you and will be pulling for you !!!

Just discovering this site and being able to communicate with other sisters who have experienced and are experiencing all that you are going through now, will help you more than you will ever know.

Hugs and Hugs to you!!!!!!!!!

HI Kay,
Please tell me more about the injection. I am also one of those that was never able to tolerate estrogen. Today i started on the Vivelle Dot. 025. I am hoping that it will help. About 3 weeks ago my gyn gave me premarin which was a killer. Within 5 days i had horrible pelvic pain. I need something for the hotflashes and ther is a concern because I am underweight and frail....for osteoporosis.
Any information would be helpful. I also just started on effexor for the flashes and depression.

thanks,
mel

Hi Mel:

I can only tell you that it is just estrogen. I began with l mg. once a week, to see if I could tolerate it without any problems, then we increased the dosage to 2 mgs. for two weeks and then to 3 mgs for three weeks. I have remained on 3 mgs. since July of last year. I was having so many problems with hot flashes, being depressed, ill and absolutely no energy and tried every patch, pill and cream that is made. All of it made me so sick to my stomach and it seemed that I was getting even more depressed and less energy. Nothing, even adjusting the dosages, would help. I guess I happen to be one of those unlucky people who don't tolerate medication well at all.

I only know that when I hit on the injection that within a couple of days I felt like my old self again. I am 49 and was not experiencing any symptoms of menopause, that I can recall, so you can see that all of this hit me like a ton of bricks after my surgery. Almost immediately. I just hated myself, and practically everyone around me. It is has made a trememdous difference in my quality of life and I fell that I can take whatever menopause sends my way now. Like I said, it has worked wonders for me and I have read many posts here where some women do not like it. The only problem, and this is not a real problem, is going to get the shot every 3 weeks for me. But hey, for how it makes me feel, I can handle that little 2 seconds of pain.

Please let me hear from you..

Love,

Mel,

Sorry, but I forgot to tell you that I was having hot flashes about every 5 minutes all day every day and terrible headaches. All of that went away, for me, within a couple of days after my first injection. So, I know it worked for me.

I too have been having killer headaches....more so the past 6 weeks. Actually i have them daily and they keep me home poopingheadache meds. hmmmmmmm.............
let's hope they break soon. I can't do this much more. I am also dealing with a bad fibromyalgia flare. It's just too much to handle.
thanks for writing back,
mel

Thanks so much Linda and Karen for taking the time to reply to my posts. I am really going to consider the different options and ideas that you have presented to me. Tears ran down my face as I read your replies because I have felt so alone through all of this. I do have a couple of good friends and a husband that have tried to be here for me but I don't want to dump on them all of the time, so I put on my happy face and try to act as though everything is okay. They just don't get it... I haven't thus far been able to take any man made med and feel like myself. I don't think that there is really any substitute for our natural god given hormones. The thing that I have learned from all of this is that I will never take my life health and family for granted again. I still have so much and didn't appreciate the little things before. When I have a good day, I am greatful for it and I notice it. I do wish that I felt well every day though.
Have you sisters ever had the pressure feeling in your head or ears? What causes this do you know? I'm thinking I may have to make a quick trip to the states and smuggle some testosterone across the border. I can see the headlines now. Actually I think I will have to keep searching for a doctor that will perscribe some that a compounding pharmacy will make. If not, I may be taking a little trip. I've never heard of vitamin e suppositories being used here but will check into it more. I did try breaking open some capsules once, but at the point I was at during that time noticed little difference, it may be more effective now. I have never tried the estrogen shot because I was afraid, but maybe it would work better then what I'm doing, I'm going to be in this condition for the long haul so I'll most likely try the shot at some point. I know of a place that compounds the estriol cream but I was worried about weather it would be strong enough because it is a weaker estrogen. When using it, does a person still need the systematic estrogen or is it enough?
One more question, Has anyone experienced pain below the ribs after taking medication. I'm thinking that it must be my gall bladder and wonder if it will go away. I haven't mentioned it to doc. because I really don't want another organ removed. I really don't fit in the risk group for gall bladder disease except that I know estrogen does effect this organ. Anyways take care and thanks again for your responses. I feel bad that you are going through this too- but am glad that I have someone to write to who is understanding of my condition.


Thanks, Shellynn