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Lost & Confused Lost & Confused

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  #1  
Unread 04-20-2006, 04:57 AM
Lost & Confused

I am so confused....and lost. I'm nearing one year since my hysterectomy and am still trying to find the "right mix" to bring some normalcy back to my life. I just want to feel good again. Balancing these hormones is getting to be more than what I can handle. I am on information overload and simply cannot stand reading anymore about HRT! Yet, I need help!!!
I am on the Femring (0.10) and Prometrium 200mg. I love the Femring, except that it runs out at 5 weeks. My gyn did write the script to have it changed every 60 days, but I am not even making it to 60 days. I can feel it running out, and I get irritable, hot flashes, night sweats, insomnia, vaginal dryness, agitated, DEPRESSED, etc. etc.

I have an appt. with my gyn on Monday to have the Femring changed....but was wondering what other options I have. I've tried compounded pills and compounded creams.....none of which worked for me. I've been on anti-depressents.....none of which worked for me (I am very sensitive to meds). I have an appt. w/an endocrinologist next week (as suggested by my gyn) because of my elevated DHEA (602) and elevated testosterone (am not taking anything for that).
I've been seeing a therapist for depression and have an appt. in June with a rheumatologist for my Raynaud's. I'm a mess right now!!!

I guess my biggest question is what to do about the HRT. Shall I stick it out with the Femring, or try another method (such as a patch)??

This too shall pass......just not as quickly as I had hoped!!
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  #2  
Unread 04-20-2006, 05:31 AM
Lost & Confused

I don't have any answers for you but I am right there with you! I started on Estratest (had horrible headaches), switched to Climara (still headaches plus chest pain, fatigue, abdominal cramps, extreme irritability), tried progesterone (increased nausea and acne) and now have just been on Tri-est for the last five months. The only thing it has helped with is mood and headaches all but disappeared, but now I have chronic nausea which I wonder if the Triest is causing. Last week we changed the ratio of estradiol/estriol/estrone to include more estradiol and less estriol and already the nausea and body aches are far worse! ARGH! So I can completely understand your frustration. At least you have had your levels tested and have some idea what is going on, which is a plus (although not knowing why must be frustrating). I have been working with a gyn AND a naturopath for my bioidenticals and STILL can't even get them to test my hormone levels after five months on them. They just don't believe in testing. But going by symptoms alone has not seemed to help much either.

The only thing I can think of in your situation is the high amount of progesterone you are on. If you aren't on enough estrogen, sometimes progesterone can make the estrogen deficiency worse. Here is a thread where Surferbabe explains this pretty well:
https://www.hystersisters.com/vb2/sho...d.php?t=250201

I wish I could be of more help but just wanted you to know you aren't alone in this. I hope you get some answers at your next appointment. Good luck!
  #3  
Unread 04-20-2006, 06:12 AM
Lost & Confused

I've been denying it all along....even to my gyn. I'm finally ready to admit that YES......this hysterectomy really did a "number" on me!!
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  #4  
Unread 04-20-2006, 05:42 PM
Lost & Confused

I know how you feel roz5! I struggle everyday with grief, anger, depression, and sometimes regret that I had this done. I was not really ready for a hyst and I remember crying for days after saying "yes" to it. I just wanted relief from the relentless endo pain and I could not find a doctor who would do another laparoscopy (that my insurance would cover) to remove the endo. Lupron didn't work, birth control made me absolutely sick (that should have been a clue about me and hormones), and the daily pain meds I was on had me worried about addiction issues since I am a recovering alcoholic (sober 6 years now). My doctor basically gave me an ultimatum. Do the hsyt, which he said would "cure" the endometriosis, or come back in six months to see him for my annual pap. I think it was his subtle way of telling me we tried everything he knew of and since it didn't work, that was the only thing left to do. If I didn't want that, I would have to look elsewhere for care because he couldn't help me anymore. And that is exactly what I should have done. I had one second opinion at the same facility by a male doctor who said the same thing. My endo was too extensive to remove by laparoscopy. It would only come back. But here I am eight months later STIlL in pain from what I think is the endo since my gyn still didn't remove it off my bowels or bladder when he took my reproductive parts. I really tried not taking any hrt but I nearly lost it I was so messed up and suicidal. I tried progesterone with another gyn and it made me sick with nausea. I tried anti depressants and again sick with nausea. I can barely eat anything without getting sick and have lost 8 pounds in the last two months. I now weigh 108 lbs, down from 116 lbs at the time of my hyst. I am emaciated, worn down, getting fevers (last week had a 101 degree fever at a doctors office when they took my temperature), struggle with low back pain I never had before, struggle daily with lower abdominal pains, have diarrhea, constant body aches, intestinal spasms, candida issues, fatigued all the time, moody and depressed, have dealt with hot flashes for the last eight months that no hrt seems to quelch, haven't slept well in months and months. And I can't find a doctor who will help me figure this all out. Living like this is NOT NORMAL!!! I will starve to death if I don't get answers soon. I am saving up sick leave for a vacation in May, but afterwards it's back to a gastroenterologist next, and on to an allergy specialist, and more pleading for a hormone workup. I have been to more doctors and missed more work since my hyst than before! (lets see, a naturopath, physical therapy, numerous gyns, a family practice doctor, a psychiatrist, an ultrasound tech). Some days I would give anything for my reproductive parts back and just deal with the pain because at least then I could eat and take pills without getting sick. I had a few good days out of the month where I had energy and motivation to do things.

Ok, I am done venting. I can so totally relate to the frustration of being stuck in this hormone jungle. I keep holding on to the hope that after the first year my body will settle down. Somewhere out there is the right hrt and dosage for us. Somehow it has to get better than this. Right? I know I need to see a therapist to deal with this grief, which probably isn't helping my health, but again that is more time I have to miss work to do. I have already been "talked to" about the amount of work I am missing. I can't afford not to work. I have a boyfriend with a terminal illness that I live with who can't work and may be dying at this point (he coughs and hacks 24/7 but won't go see his doctor because he is a male and thinks he can handle it himself) and he can't support me if I don't work. In fact, I help support him. So I really dont know what to do. I am so tired of fighting for the help and care I need.

I know that if it weren't for the compassion and support of you women on this site I would have given up a long time ago! Sorry for taking over your thread here, I think I am having another one of those hormonal moments! Your words just sparked so much emotion in me. I am so sorry that you are having such a difficult time as well. I wish you the best in your journey in the jungle and I am sending you a great big cyber HUG because I understand your frustration. We seem to have a lot in common (especially with intolerance to medications). I would love to hear what your endocrinologist has to say. I am glad to see too that you are seeing a therapist. It does help to have someone to talk to. I don't know, maybe I can work something out at work with seeing someone from the employee assistance program. They can not deny me that! Anyway, good luck to you and hang in there.
  #5  
Unread 04-20-2006, 05:53 PM
Lost & Confused

Naturebound.......I'm sending a big hug your way!!!
To make you feel better, my list of "specialists" includes- gynecologist; endocrinologist; rheumatologist #1; rheumatologist #2; endocrinologist; podiatrist; primary doctor #1; primary doctor #2 (only lasted one month with that one!); primary doctor #3; therapist (2 different ones); psychiatrist (in June); and a partridge in a pear tree!!! And the saga continues!! Hopefully, this week will be the answer for me......gynecologist on Monday; appt. w/my therapist Monday evening; and endcrinologist Thursday. Geez......if I could just get them ALL in one room...face to face.....and say.....HELP ME!!!!!!
I'm thinking of you, naturebound. This too really shall pass and one day, we'll be galavanting in the golden waves of grain with a smile on our faces and a hop to our skip!!
Hang in there!
  #6  
Unread 04-22-2006, 05:29 PM
Lost & Confused

I can totally relate to everything you both said and more! I have been hating life since before the hyster, and no I feel like I am at the bottom and can't crawl my way out! I have had ongoing and multiple symptoms like: tingling & numbing in the extremities, sunburn feeling all over my skin, new headaches, joint pain, ear aches, sinus problems, dizziness and lightheaded, muscle twitches & brain fog, just to name a few. Been to the ER twice, seen my GP twice, seen my gyn once, physchartrist, counselor, and a ENT specialist. I have had a CT of my head, will have one for my sinuses, EKG, an A line, blood work, etc. All of this and they all still say anxiety, depression and hormonally off! I am on vivelle dot 0.1, anti anxiety meds and Lexapro. This is my second increase. I am so incredibly frustrated and terribly depressed that I feel so lousy. It is also an incredibly scary feeling for me, because I automatically assume that what is going is a horrible life threatening disease (ie. brain tumor) and not hormones, because I have never in my life felt this way - ANXIETY!!! I sometimes wonder if I will ever feel "normal" again. I am getting terrible desparate!
  #7  
Unread 04-22-2006, 05:34 PM
Lost & Confused

oh my goodness, paytonlynn.....sounds like we're in this together! I am going to bed earlier and earlier to avoid having to deal with all of this. I'm ready to give up and throw in the towel....raise the white surrender flag!!
  #8  
Unread 04-22-2006, 09:19 PM
Lost & Confused

Paytonlynn,

I am so sorry you are having such a hard time too! You know, I went to an ENT at about three months post op to rule out sinus infection also and you know what he said after checking my nose, ears, and throat out? Everything looked normal and to try taking tylenol to see if that helped! And then he simply walked out of the room! I must have sat there for ten minutes with my jaw down to my chest. I mean, I tried every painkiller known to man, including prescription Imitrex, and no help at all. It was when I switched from Estratest and then Climara to taking a very low dose of Triest (compounded bioidentical estradiol, estriol, and estrone), that the headaches disappeared. That is until last week when I switched the ratio of estrogens in my Triest to include more estradiol and less estriol because I am still having hot flashes, insomnia, body aches, fatigue, yada yada. Now the headaches are coming back but not as intense. I seem to be extremely sensitive to estradiol. And I am aware also that fluctuating hormones (from changing dose or type of hrt, and from being early post op) can cause headaches as well, although these type of headaches come and go and don't tend to be as constant. One thing I do want to warn you about is taking repeated courses of antibiotics, especially when you don't have a specific bacterial infection diagnosed, can wreck havoc on your GI tract. I was on three courses of antibiotics from one month before my hyst (for a real sinus infection due to stress of upcoming hyst), during my hyst (to prevent infection), and after my hyst (for the assumption that I had a sinus infection because of my headaches which turned out not to be the case). I began to have chronic nausea, diarrhea, couldn't tolerate pills of any kind, was getting fungal infections on my feet, etc...I had a stool test cultured for bacterial infections and it came back with very high levels of yeast and other harmful bacteria. I was diagnosed with a fungal yeast overgrowth of my intestines and have had to eliminate sugar and yeast from my diet, take probiotics and antifungals. My doctor says this is due to intestinal flora imbalance from the antibiotics killing off the good bacteria that reside in your gut and protect against harmful bacteria. Hormonal imbalance, especially lack of estrogen, can also make conditions ripe for yeast to grow down there. So please be careful with the antibiotics and get a second opinion if a doctor wants you to take them without a definitive diagnosis. I know they like to give those out like candy sometimes. You may very well have a sinus infection but I just wanted you to be aware of this so you don't end up as sick as I have been. I can barely eat anything without getting sick now and have lost a lot of weight (I was thin to begin with, now emaciated). A safer approach to treating a possible sinus infection would be to use a saline nasal spray to irrigate and reduce swelling of the nasal passages. I was prescribed this as well when I had the real sinus infection before my hyst (the symptoms I had with this infection were much different than the sinus like headaches I had after the hyst) and it did help. I had such intense pain then that functioning at all was impossible. Until it was treated, the only relief was pressing a hot wash cloth on my face. I actually cried the pain was so bad. And I had mucos discharge then too in my nose and my teeth hurt. Now, the headaches I had after my hyst that turned out not to be sinus infection was pain and tension in my jaws, temples, ears, cheekbones (especially close to my temples), and molar teeth from grinding them. This pain was only relieved by switching hrts. I would also get discomfort in my nose and strangely enough, a sore throat. The sore throat also went away with switching to a different hrt. Even my doctor was baffled by that symptom being hormonal. But I suppose estrogen deficiency in itself could dry out your mucos membranes, just as hormonal imbalance can cause either dry or oily skin.

I totally understand your fear and anxiety. Who wouldn't freak out when having all these strange symptoms you never had before, and doctors don't seem to educate you about the symptoms and effects of surgical menopause. All you here about are the hot flashes and nightsweats. So when something like tingling and numbness or sinus like headaches come along, you are left going through all kinds of tests wondering what is happening to your body. It is unnerving and for some of us unlucky folks who don't find hormonal relief right away or have hypersensitive bodies that seem to reject every hrt we try, it can be a trumatic experience. I feel like a completely different person than I was before. My body sometimes feels foreign to me and even the shape of it is so different (for instance, my chest is almost completely flat now and I haven't worn a bra since last September...sorry for TMI). It will take me a long time to get used to this "new" body I seem to have acquired.

I know that you are still early post op and it might be too early to start adding other hormones, but I do want to mention that I tried progesterone added with the Triest and it really calmed me down and helped with sleep, and it helped rid of the headaches. The only reason I had to stop taking it was because it made the nausea I have much worse. I have always struggled with progesterone personally and had the same problem when I tried it for endometriosis before my hyst, although that time I tried a synthetic progestin. But that is just me. Many women do well with progesterone. You may want to ask your doctor about trying it sometime down the road if you haven't already. Also, finding a doctor who is highly knowledgeable about hormones and surgical menopause helps too. The gyn that did my surgery was clueless about hormones (he was barely 30 years old and male...two strikes right there) and basically had to read a text book to prescribe something for me. When I complained about the headaches, he didn't think it was hormone related. WRONG! It took several doctors to find one I was comfortable with who was open to trying different things and took me seriously.

Also, the fact that you were dealing with cancer before your hyst has probably added to your feelings of helplessness and anxiety. It must have felt like your life was out of your control. I feel for you there! To not have control over what is happening to your body is frightening. It is so hard to calm down and try to be patient and work on each problem, but stressing yourself out only makes it worse. I know. I just wish I had an answer for how to deal with the anxiety. I myself can not handle antidepressants without worsening nausea, or I would be going that route myself. I tried Cymbalta and Wellbutrin several months ago but they both made me sick. ARGH! I will tell you though that this site has been such a great help to me in this dark time. Just to have others to talk to that understand what you are going through helps. I am so grateful for you guys sharing your stories here too. It helps to know it's not just me, although I hate to see others suffering like I am.

I am sending my thoughts and prayers to both of you tonight, and I hope that someday we will come out of this much stronger. Good luck to you guys and try to get some rest tonight, ok? I am looking forward to a nice long hot bath right now. Take care!
  #9  
Unread 04-22-2006, 10:52 PM
Lost & Confused

Thanks so much - I am in just total tears right now. I hate this! Everybody's post means so much - truely. I really feel like I am going crazy sometimes, but knowing that there are other women out there experiencing what I have, does help. I am calling my dr again Monday. She said that I didn't need progesterone because I no longer have a uterus, so her response will be interesting. I will also ask about the compuounding hormones too. Thanks again so much! HUGS to everyone!

Kelly
  #10  
Unread 04-22-2006, 10:55 PM
Lost & Confused

I hear you Roz5. I am tired of feeling this way too!!! THere are days when I just want to give up.
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