trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
hi everyone! I am very very sick and not able to communicate clearly but I felt this was importnat enough to make it's own topic. (again--I know it keeps coming up for many of us)
I had my right ovary taken out less than three weeks ago. I had my period right before it was taken out and then bled like a period during the immediate post op. I was not on any hormone treatment before, during or after surgery.
Two days ago I started bleeding again. 18 days after sugery and 14 days after I stopped bleeding.
I am having the hell period of my entire life.
I am completely menopausal (and not in any good way)and yet bleeding.
My lyme symptoms are THRU THe ROOF. Every single one of them is flaring and badly. Things I havent had in a year are here now and things I have every day are at their worst.
I am so dizzy and chilled then hot and then my skin gets the creepies and then my legs are burning and feel bruised and then my muscles ache and then I get that sudden muscle fatigue feeling that is close to a burning sensation and then I get an ice pick feeling then a headache, etc etc. I cant sleep and I feel like body parts arent attached to me, I have very bad lumps of pain that move around and intense pains that are not lumps but jabs. All of this is on top of severe pelvic pain and cramps, extreme fatigue---cant do anything at all, and emotions that you would NOT believe.
Yesterday I cried for hours and hours and I wasnt even really sad. Just couldnt stop the tears.
Obviously this is super duper hormone imbalance.
I have started taking prometrium 100mg at bedtime. last night. I am a tiny bit more functional today but all symptoms are still here.
There is more connection than I ever ever thought possible between hormones and lyme. And I was already a believer!
This roller coaster is for the birds. Forget the total hysterectomy without HRT---you women are NUTS! And much stronger and braver than I am.
I need to go lay down again.
I stopped all ABX 4 days ago now due to stomach issues that I now believe were ALSO related to hormonal imabalance. I was on zith, plaq and artemisinin so the zith should still be in there some.
PS---there is NO literature that I can find that speaks to hormonal stuff with a unilateral oopherectomy. Everything is about bilateral or total hyst. My surgeon just said---um, basically anything can happen so be prepared. I had no idea THIS could happen and so late after the surgery too!
Posts: 1950 | From New Mexico | Registered: Sep 2001
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riversinger
Frequent Contributor (1K+ posts)
Member # 4851
posted
Hi Trails,
Sorry this has thrown you so badly. Yep, hormones are a big deal! If necessary, there are bio-identical estrogens available, as well as progesterone. You may need that, as the headaches can be related to estrogen stuff.
Also, I switched from compounded progesterone to Prometrium recently, because of insurance issues. I am not finding it handles my symptoms as smoothly as the compounded, and you can't tweak the dose as easily, since it only comes in 100 mg or 200 mg capsules.
A friend of mine is using compounded estradiol in an oil base. She takes it sublingually. It is really nice for titrating the dose up or down as needed. Your body may not stabilze hormonally for a while, so a regular dose may not be what you need. Being able to go up and down by minute increments is very helpful in that case.
I am getting my hormone levels checked too, because right when all the lyme stuff started, I also started with GI problems (the ones I've been talking about), and pain in my ovaries all the time, bled for 5 days for no reason, no bleeding for 2 weeks, now my full blown period is here and OMIGOD every symptoms of mine is here X100...muscle aches, back pain headache, sobbing...and sobbing...and sobbing, no apetite, muscle twitches, the worst period and non period cramps ever, and of courrse the bleeding. I can't even start ABX until I get my tummy in better shape, and that won't happen I don't think until I get my hormones in shape. Its possible I may end up back on the pill. I went off it about 10 months ago...actually right before all weird symptoms started.
Posts: 594 | From NJ/NY | Registered: Jun 2006
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
Thanks river!
I am having such a hard time reading and trying to make ANY decisions that I just took the Prometrium coz I could. I know there might be better options but for now this was here and available.
When I called the doc on call yesterday they said via the nurse "take herbs." when I asked what kind ofherbs the nurse said---you know any of those over the counter things. I was absolutely shocked at the unprofessionality of this advice. So I told her to call him back and find out EXACTLY what he wanted me to take. She called me and said he wants you to take anything with soy in it.
soy is NOT an herb. I knew I shouldnt trust any of their advice. Soy has estrogen, I know, but that can be problematic.
Estrogen----problem with estrogens are that they increase endometriosis, fibroids and your bodies ph level so that it tends towards YEAST!!! None of which are good for me.
Plus estrogen has been found to be at the root of a lot of the studies around women's cancers.
I am scared of the stuff.
thanks for your thoughts! T It is now 108 degrees. I am headed to oakland to cool off and join the parade tomorrow!
Posts: 1950 | From New Mexico | Registered: Sep 2001
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riversinger
Frequent Contributor (1K+ posts)
Member # 4851
posted
Trails, the bioidenticals have not been implicated in cancer. The studies have all been done on the patented drugs derived from horse urine. Even those were found to DECREASE cancer rates in the women using them. The problem was with the heart attacks.
Anyway, I wasn't thinking about the endo. That changes what you might want to do. Prometrium may be fine for you, just giving you a heads up on it. That, and the idea that if you are too low in estrogen, it might not be the best choice for the headaches. But you will have to experiment to find out. Headaches can happen when the levels go up OR down.
I agree with you about the soy products. If you want to try something that is NOT estrogenic, but is proven in studies to relieve symptoms of menopause, you could try Remifemin. It contains cohosh, can't remember if it is blue or black. Do a google, you should be able to find some info on it.
I've tended toward estrogen dominance, so am just beginning to experience signs of low estrogen as well. The info out there is confusing.
Have fun at the parade! Looks like it should be fanatastic. There ARE some good things about CA.
trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
elley---testing of hormones is tricky. You can do blood tests, but they RARELY show any thing coz the range is so wide. You dont have to have anything "wrong" with your hormone levels to have endo and other problems like cysts and such.
There are some out of network places that test via saliva and urine for a few days in a row and they have more accurate results, but I havent felt like that was worth it. $$$$ They just put you on "TNT" Targeted Nutritional Suppliments and I was already taking so much for the lyme and stuff I didnt see how I could fit any other suppliments in. Plus sometimes I just dont think they are enough when you are taking heavy duty western meds and have some serious illnesses.
just my thoughts.
Elley---your tummy got burny and bad just a few days before this whacked out period started huh? That is what I remember and that is what happened with me too!
are you writing this down, coz if nothing else you gotta be writing this down, we'll never remember it otherwise.
Posts: 1950 | From New Mexico | Registered: Sep 2001
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
River---sorry about the cancer mix up. It is very hard to keep up with the studies and what they are ACTUALLY testing saying--even for us "informed" lymies huh?
You are right---the info out there about hormones is really not sufficient. It is very contradictory and when you are already an emotional mess you cant really read that stuff can you?
Thanks for the suggestion of the Remifemin. I have a bunch of friends from the endo boards who have been trying to help me out and they say that one is pretty good, but they all say you need to work with an herbalist who REALLY knows what they are doing and you cant take over the counter stuff or premixed stuff. Or try to make your own unless under the direction of a really knoweldgable person.
who da heck knows.
not I.
thanks again. trails
Posts: 1950 | From New Mexico | Registered: Sep 2001
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Carol B
Unregistered
posted
TRails said ; Forget the hysterectomy without HRT- you women are NUTS !
Hey I resemble that remark!
Maybe I'll go back to hystersisters.com for some direction. It would be interesting to post on there about Lyme Disease. Sadly there may be many undiagnosed Lymies not knowing what hit them.
Even more reason to go spread the word. Watch out Hystersisters-here I come!
posted
yeah Trails, I am writing EVERYTHING down about my symptoms, when I get them, when they change, no matter what the symptoms are or how unrelated I think they may be.
Whats odd is that I woke up this morning with the cramps from HELL and when I tried to go to the bathroom I couldn't push cause when I did it felt like my left ovary was going to explode...it really stung.
Of course among my symptom entries are my "whoa is me" depression stuff, so it'll be an interesting read for any doctor I'm sure
I def. want to go on zoloft for a while, just so I can keep my head straight thru all this. It also may help with some of the neuro symptoms and tummy symptoms.
I need to get my head and GI tract in a better place before I tackle antibiotics.
Just like Dr. Leo Marvin says in What About Bob "baby steps"
Posts: 594 | From NJ/NY | Registered: Jun 2006
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I also lost my right ovary a couple of years ago for the same reasons you did. I guess my left one is doing ok.
I didnt know your hormones got messed up from only having one ovary?
I saw an endocrinologist DUCK who said all my hormones were fine, (my adrenals too). I have serious doubts about his "findings".
Now, i dont know WHATS going on in my body.
I hope you start to feel better. I also have that weird muscle pain and burning in my legs.
Jordan
Posts: 593 | From Miami, Florida | Registered: Apr 2004
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
trails,
I'm so sorry to hear you've been having a rough time. One question before I forget: have you been tested for co-infections, because some of your non-hormonal symptoms sound like Bart to me.
Long before I knew I had Lyme, I had a lot of hormonal problems and after unsuccessfully trying a number of homeopathic and herbal remedies, I finally started taking estradial and progesterone.
I'd read some of the conflicting data, but for me, the relief I got from HRT ultimately outweighed the risks. And still does.
Hope you start feeling better soon; my thoughts are with you!
Andie
Posts: 2549 | From never never land | Registered: May 2005
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Hello Trailsey.
I'm 48 right now. I got Lyme at 44. The first thing that happened was my periods stopped completely. Then my thyroid took a nosedive.
I went to a women's health specialist/endocrinologist. They tested my hormones. They said, "You've got the hormones of a 70-year old. Don't worry about getting pregnant!"
(That's funny, since I felt so low that sex was about the last thing on my mind. I did not yet know I had lyme/babesia.)
They put me on this concoction of plant-based HRT -- two creams, a compounding pharmacy thing, pills on certain days, blah blah blah.
However, it seemed like an awful lot of trouble. I declined to do it after a coupla months and just let nature take its course.
Lyme can screw with your hormones BAD. Really bad. Seems there's very little documented about this except anecdotally.
I hope things start looking up for you!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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posted
Duh, I'm sorry! I thought you said you had no ovaries left. Modify what I said then!!
How ya doin today?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hmmmmmmmmmm????????
About 46 symptoms.. and all of them rated as severe???
Sounds like you are feeling a bit ruff my dear.
Perhaps try some soy milk. I hear it works well.
Ahhhhhhhhhhhhhhhhhhhhhhhhhh!!!!!!!!
That is EXACTLY what I was told to do after reporting to my surgeon... and anyone who would listen... that I was totally HORRIBLE.. that all my physical symptoms returned FULL force.. and I was soooooo stinking depressed I actually thought about driving my truck head on into a dump truck that was going about 60 miles an hour.. on purpose! I've NEVER been that way before... EVER!
My surgeons response to my crisis was to...
"Drink some soy milk"!
And the surgery wasn't even on my "girly" parts... I simply had a skin cyst removed!
You said.. "Obviously this is super duper hormone imbalance."
Well.. just in case it may not be... here are a few thoughts for your viewing pleasure.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
In my case.. and I fear others go through this too.. it was the anesthesia that caused the BIG problems after surgery. Nitrous oxide.
Now.. I don't know all the technical ABC's about that stuff... but I do know it gets built up in your fatty cells and by the way, it has been linked to prostate problems in men.. especially dentists. Anyhow...
After a HUGE amount of effort and research.. I learned the only thing I could do to help myself out of this nightmare was to FLOOD the cells in my body with oxygen to push out the stored up nitrous oxide.
Why the nitrous oxide does that to Lyme patients (me) and maybe others (?).. I have NO clue? But it does.. and the doctors ABSOLUTELY don't understand it.. won't admit it cuases a problem or even can.. and if soy milk doesn't fit into my favorite "things to do to reverse the horrible reaction" ...
I was told to go to my primary doc and tell them to put me on 6 months of anti-depressents to "make you better".
IDIOTS!
It took a lot of effort.. and a lot of running around.. but I was finally able to get someone to order an oxygen tank for me to use at home.
I simply breathed the oxygen through a nasal cannula.. 2 times a day for an hour at a time.. LOW dose.. for about a month or two.
That did the trick. I was soon back to my normal crummy self... and all was well.
No soy milk.. no antidepressants.. just oxygen.
NOW.. LISTEN UP!
I am NOT saying that this is YOUR problem or YOUR situation. I am ONLY reporting this info because it is something that CAN happen... and does... and I don't know why... BUT ... I DO know the ducks will deny it.. and can't fix it cause they have no clue about it... and I know it can wreck havoc on a body. By the way.. it didn't hit directly after surgery. It seemed to build up during the days following.. and by week number three I was a total basket case.
````````````````````````````````````````````
Ok.. next thought..
Is it possible you have a new infection or complications from the surgery? You should have that checked. I mean HEY.. we already have infections.. sooooooooo.. could we tell if there was another one added to the brew? See what I mean? You should have that ruled out.
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This line below (and stuff above) is NOT advise and I am not telling you what to do. And it certainly isn't medical advise.. it is simply a statement... MY opinion..
"When in doubt.. doxy helps you out."
I have found that when the Lyme symptoms increase dramatically and/or suddenly.. even if you don't know why... the ONLY thing that has helped me was doxy. I accidently discovered that little tidbit of info.
EXAMPLE- I know when taking the cholestrymine protocol and I had a SUPER BAD herx that wouldn't stop, month after month.. even after stopping the stuff .. and it went on and on and on... and NOTHING else helped....
I took doxy... and for some unknown reason.. it worked. Did the keets suddenly all go from cyst to spirochetes and cause that blow up? Did my system suddenly get overwhelmed? I have no clue. But whatever happened.. and it really doesn't make sense... and I have tried to figure it out.. but for whatever reason.. doxy stopped the nightmare.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
I am going to post another post in a few minutes.. I'll call it something like how to tell if you need estrogen or progestrone. You reminded me of this.. and maybe others would be interested. So take a look-see for other ideas to consider.
I hope something helps .. I really do. I don't like seeing my favorite trail feeling like she was trampled on.
riversinger
Frequent Contributor (1K+ posts)
Member # 4851
posted
Trails, you got it right about the confusion out there! I'm inclined to believe that bio-identical hormones are OK, if given in a reasonable, dose, what is called physiological. But the truth is, nobody knows for sure. They can only have theories based on inadequate tests that have only been run with the fake hormones.
However, watching how supplemenatation of OTHER hormones works, I'm guessing that patented hormones will always cause trouble, because they don't work quite the same way as our own do. They have found this with thyroid and adrenal hormones, so why not sex hormones?
If you want to read some radical info on HRT, check out Sex, Lies, and Menopause by T. S. Wiley. I don't buy the theory 100%. They recommend a very heavy supplement schedule for a woman's entire life. However, the reasoning behind the recommendations makes some sense to me. I think the answer is probably less extreme, and more simple than they came up with. But it gives a different persepctive to WHY you might want to supplement.
On the herbs, its always best if you can find an expert to guide you. The problem is, who? If you find somebody, let me know. Hormonal issues are a big problem.
Have fun today! Are you gonna take pics? Are you dressing up?
posted
Hey river...Did you know that the big "research" thingy was done only on Premarin and MOST if not all the patients were in their 50's and 60's?
So it's no wonder that some of these women were having heart attacks. I looked at the figures way back and felt the risk of taking Estrogen was not that big.
If my memory serves me right, the percentage of those having heart attacks was like 1 or 2% higher than those not taking the Premarin.
We have to be careful of how things are researched. We have to read between the lines and look at the overall numbers.
You never know if some company just wanted to knock out the "competition" {Premarin in this case.}
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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riversinger
Frequent Contributor (1K+ posts)
Member # 4851
posted
Yeah, Lymetoo, that study is a rough one. It is the same one where they found that half of the women taking estrogen only, had breast cancer, compared to the controls. Because that wasn't what they were trying to prove, and because it was one point off from "statistical significance", it has not been reported. So, even without progesterone, they think the estrogen might be protective.
But it is all hard to generalize from,, because of the drugs used.
Hey TC, good thought on the surgery. never having had any, it didn't occur to me. But it makes perfect sense that it would upset everything.
quote:Originally posted by riversinger: It is the same one where they found that half of the women taking estrogen only, had breast cancer, compared to the controls. .................... So, even without progesterone, they think the estrogen might be protective.
Really? I hadn't heard about that study! Makes me feel better! my dr also prescribes estriol, which is supposed to be protective against breast cancer.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
First--river---I didnt go I was sooooo sick and sad yesterday. It was a big debate. It is so hard to try to make those decisions...will this be too much for me or be exactly what I need? We decided too much. I ended up draggin my partner into HER period a whole 10 days too early so these hormones and pharamones are RAGING cajun people.
Also----I am going to Beach Blanket Babylon next week so I guess for a small town New Mexico gal, that will be as gay as it gets!
I upped my dose of prometrium to 200 mg last night. We talked with the doc again and he said I was having full surgical menopause. From my list of symptoms I was not producing any hormones or enough of any of them to make a difference. I believe him. It felt WRONG. He said surgical meno is MUCH harder than natural and can be dangerous if you dont stablize the hormones--for suicidal behavior as much as body function.
Emotionally now with 2 days of prometrium I am feeling much more stable. Physically I am better too, but the pelvic pain is still bad. The lyme symptoms have calmed considerably though.
Tincup---you bring up excellent points. My LLMD does HBOT so I will ask him about his take on this nitrous oxide next week. Problem is I am about to travel for a week and so oxygen would be a real problem to lug around. But a lyme laden butt is heavier than a tank of oxygen isnt it? although I dont think it is an explosive road hazard.
ALso--I ate a tofu based dinner the night before all hell broke loose so those docs dont know squat about soy. But this past time the doc talked right to ME, and he did seem more knowledgable. He acklowedged that estrogen will flare my endo and fibroids and that we should stick to pure progesterone.
Post op infection----I dont think so---I dont have any tender points, I actually have less fever than I do typically every day ---I just FEEL like I have a fever, and there is no redness or swelling or hot patches to touch or anything. I had a post op infection last surgery. It was a *****.
I am NOT on any anitbiotics right now. I quit them 2 weeks after surgery coz my tummy was on FIRE. I quit them 6 days ago. The tummy may have actually been the hormones. BUt I am waiting to see the LLMD for advice on what/where to go from here.
I hate doxy. It kills my tummy and I am about to go surfing (I havent done that in 2 years now, but I am gonna try it and see) and I cant be on doxy with the summer sun. NO go. But I will remember this for my NEXT surgery which is lined up for december when it should be raining for weeks and weeks.
TINCUP---I'd like to hear more about your CSM experience--I was taking it for the last 5 weeks and had to quit coz of the tummy thing. SO between the CSM, lyme, co's, surgery, hormones,---um---hello? WAY too many variables. way. We may never know what caused what --- but I am just psyched that I today I havent wanted to kill myself yet.
Thank you all for ALLLLLL of your research and thought and compassion. I dont know what I would do without this site! will keep you up to date! TRails
Posts: 1950 | From New Mexico | Registered: Sep 2001
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riversinger
Frequent Contributor (1K+ posts)
Member # 4851
posted
Trails, too bad about the parade. But there is always next year. And Beach Blanket Babylon is a riot!
I'm glad things are stabilizing. I've been taking progesterone for almost 5 years, first compounded, and now Prometrium. I did a little better on the compounded, but insurance pays for Prometrium, so I switched. I would be in VERY bad shape without it.
You mentioned on the other thread that Rifampin shouldn't be taken with Prometrium. I did, for 4 months. I think it just messes with the absorption, if I remember right.
I hope this gives you a better period of time for a while.
quote:Originally posted by trails: He said surgical meno is MUCH harder than natural and can be dangerous if you dont stablize the hormones--for suicidal behavior as much as body function.
That was my concern when I said it was nuts to go completely without HRT after surgery. Not so much the suicide but for the shock to your system.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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I had no idea THIS could happen and so late after the surgery too!
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