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Post by Helen on Aug 15, 2006 18:59:46 GMT -5
Hi there, im new to this board. I hope someone can give me some advice. Is there anyone here with Endo and PCOS? I have had 2 laproscopys in the past 3 years. I was on the pill since age 11 to age 21. then I stopped and took natural progesterone cream daily in high doses, non-stop at the advice of my doc, which only made me have a period every 8 days, each one lasting 7 days! so after 4months of this hell, I stopped the cream. Of course when I wasnt on anything at all my PCOS symptoms (not endo) worsened and I experience the worst hormonal imbalance. I had a bad imbalance when I was on the pill also, it was just making my PCOS worse, not better.
the thing I dont get is, I get the worst estrogen-deficient symptoms in the world, yet people with endo arent supposed to take extra estrogen as it apparantly makes things worse. Well I feel like I have choice but to take estrogen because of my symptoms. I get sever vaginal dryness and burning at certain times of the month, hot flushes, night sweats, stiff joints, aches and pains you name it. Im not going through early menopause or anything like that. and yes, I also get the progesterone deficient symptoms as well at certain times. Now that Im not on anything, I pretty much suffer with the low-estrogen symptoms, low progesterone symptoms all the time.
The only thing that takes away the vulva burning and dryness (it gets so dry that it gets inflammed and I get swelling) is a product called femme phase which is phyto-estrogens. but then again I am told by endo experts not to take phyto-estrogens cos it makes the endo grow! its so confusing cos I know for a fact I am low on estrogen, even blood tests show it.
my hormone doc gave me natural estrogen and natural progesterone to take but I did that for 1 month and it worsened my hormonal imbalance. I dont get periods on my own if I dont take anything, since I Have PCOS. and if I do get a period, it wont stop for like 15 days and is always light, so I dont get the endo symptoms with periods. its bizarre!
starting to think the PCOS is my biggest problem, and not the endo. does anyone else have these problems with hormone imbalance and what do you do about it? after taking both the natural estrogen and progesterone, my bleeding didnt stop for like 30 days, and it only stopped cos I started taking liquid chaste tree berry. I think the only reason why I got endo is cos I was on the pill for so many years to control the PCOS and my liver couldnt handle all that synthetic estrogen.
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Post by erzulie on Aug 15, 2006 19:10:18 GMT -5
Hello and welcome Helen. Please delete one of your posts so people don't get confused (we have a rule against duplicate threads) I don't have PCOS so I don't know too much about that, but I do know that many experts say phytoestrogens are actually GOOD for endometriosis. They aren't as strong as the estrogen your body makes, but they compete with your body's real estrogen to bind with estrogen receptors. Some people specifically take phytoestrogens to help endometriosis. I also know that progesterone cream is NOT supposed to be used nonstop. You're only supposed to use it from when you ovulate until you start your period. Have you had your hormone levels checked? That might help you to know how to develop a plan for what you need to take when.
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Post by Helen on Aug 15, 2006 23:05:31 GMT -5
Hi there Erzulie
thanks so much for your reply. thats interesting about the phyto-estrogens helping endometriosis. I do know that phyto-estrogens help with my vagnal dryness somewhat. So, are normal bodys estrogens bad so to speak, or certain types of the bodys estrogens like I know there are 3 types or something. it is confusing sometimes to know what is good and what is bad. I personally feel like the pill is what caused my endo. I also think the liver not being in the best shape contributes to endo. and I also know bad digestion is a big cause for the liver to struggle, probably why the endo diet helps so much cos it takes strain off of the liver.
I started off with PCOS. then the endo came later. can I ask, what do you mean by the phyto-estrogens bind themselves to estrogen receptors? does that mean they help increase estrogen or decrease it. cos when I take the phyto-estrogens (I will call them P-E for short), it must be increasing my estrogen if it helps with the vaginal dryness etc. unless its delivering a compltely different type of estrogen to the body.
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Post by Helen on Aug 15, 2006 23:08:35 GMT -5
oh and another thing I forgot to answer. the last time I got my hormones checked was at xmas. it said the usual, low estrogen, low progesterone, high prolactin. the usual stuff that comes with PCOS, high testosterone etc. I might get them checked again after a couple of months taking nothing. that way if I take Phyto-estrogens now, I wil be able to see if it is helping my estrogen levels when I get them checked. you never know I suppose. Im too sensitive to taking natural hormones I think. I just keep bleeding.
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Post by ouchy on Aug 16, 2006 0:03:54 GMT -5
Hi, Helen. If you have an estrogen deficiency (such as in PCOS), taking phytoestrogens should actually help to increase your level (just like taking soy). If you have too much estrogen, the phytoestrogens compete for receptor binding, thus lowering the overall estrogen effect. Basically, if you have low estrogen, your body's estrogen isn't enough to compete w/ the phytoestrogens, and the phytoestrogens bind to the open receptors. If you have too much estrogen, the phytoestrogens compete for site binding.
I don't think you will find a big following of doctors who think that birth control pills cause endo, as they prescribe it to try to put it in to remission. I'm sure you know they also use the pill to shrink ovarian polycysts.
I was given Premarin vaginal estrogen cream to help w/ vaginal dryness when I was on the pill. I love the stuff. Now that I am off of the pill, before I ovulate (when i do ovulate) and see my hormone level rising, I can notice vaginal irritation, and I just put a little cream inside, and it does the trick.
I just got some bloodwork results back, and my LH (lutenizing hormone) was a lot higher than my FSH (follicle stimulating hormone), and I had borderline high testosterone...all signs of PCOS. I haven't had the ultrasound yet, but I have really irregular menstrual cycles, painful ovulation, and sometimes anovulation (no ovulation during a cycle). I'm pretty sure I have PCOS, too. If I have a really long cycle, I take some black cohosh to induce ovulation.
I know a girl w/ PCOS who induced ovulation w/ soy taking it like the ovulation drug Clomid. She also helped to balance her LH and FSH and testosterone by going on the Insulin Resistance Diet. She must have done a good job, because now she is pregnant.
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Post by denna on Aug 16, 2006 1:25:45 GMT -5
hi
I ve been to my gynae and heard many cases of PCOS. The first hing the gynae advise is to excercise and loose some weight and only then try clomid etc. i don't know much about PCOS but hope this helps.
ouchy, you mean induce ovulation w/soy means taking soy?
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Post by ouchy on Aug 16, 2006 1:36:35 GMT -5
Hi, denna. Yes. My friend took soy the same way as you would take Clomid. I think she used days 5-9, and I forget the dosage she took. I think it was soy isoflavones.
I've also heard of losing weight and PCOS, and a lot of that has to do w/ the insulin levels that a lot of women w/ PCOS have problems with. I went w/ my friend who has PCOS to her reproductive endocrinologist appointment, and I learned quite a bit.
Metformin is also a treatment common for both diabetes and PCOS.
Even though I'm not diabetic, I think I might give the insulin resistance diet a try in stabilizing my hormone levels before I take prescription medicines.
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Post by ouchy on Aug 16, 2006 2:00:44 GMT -5
Here is a cool website on PCOS. There are few pages to it. The first describes what PCOS is . The next couple pages describe hormone tests for it and what the ratios/values should be. Then the pages discuss treatment options, etc. www.labtestsonline.org/understanding/conditions/pcos.html
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Post by Faith on Aug 16, 2006 13:34:47 GMT -5
Wow, im new here and im glad to not be the only one going through PCOS and ENDO, althought the only ABSOLUTE diagnosis is PCOS but my OB said that ENDO is a strong possiblitity and that the only real way to know is to open me up. which i am now fearful, had a misdiagnosed cyst at 26 weeks pg and they screwed me up, in process of lawsuit ......i cant seem to get away from the pain mentally, physically and emotionally. my doc put me on seasonale which has estrogen which assists endo and i have all the symptoms, so my pain meds give me headaches, that of which i already get and with my already exsisting migraines doesnt help, to add to this i also have Hypoglycemia, another apparent symptom. feels like i cant get away from it, in the past 2-3 ys has been when all this accured, i have 4 lil girls which is good so i cant complain there, but just know your not the only one going through both. i just wish there was REAL answers and not "take 2 pills call me in the morning" scenerio...... best of luck, my prayers go out to you and everyone else, Faith
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Post by lisa31 on Aug 16, 2006 21:00:00 GMT -5
Hi, Helen. I have been diagnosed with both endometriosis and PCOS (endo. 6 yrs ago and PCOS 4 years ago). I know your pain and your frustration. When you have both, you are a hormonal time-bomb! That's the best way I can describe it. I have tried a lot of things and a lot of specialists to try to find help (ob/gyn, internist, endocrinologist, and now R.E.). Birth control pills are terrible for me too. In order to help with any symptoms they have to up the estrogen and hormone levels in general, but that makes me vomit. So, by the time they find a low enough hormone level that I won't vomit, I bleed nonstop. So, b.c. pills have been no help for me. The best thing I have found to help combat both was Lupron shots (1 a month for 6 months) with add back therapy (you HAVE to have the add back). But, unfortunately, I've been on Lupron twice and they won't let me do it anymore. When I was diagnosed with PCOS by my ob/gyn, I was sooo upset (at having both endo. and PCOS) that I went to a reproductive endocrinologist to get a 2nd opinion (she confirmed the diagnosis). She put me on Avandia for PCOS (it's an insulin resistance drug) and I really liked it...no side effects. However, my ob/gyn took me off of it and put me on Metformin. This gave me horrible side effects (bad stomach problems which are very common with the drug). My new ob/gyn said my case is too complicated for her (I also have Lupus and have had 2 cervical surgeries) and has sent me back to the reproductive endocrinologist to be my main female doctor. She is putting me back on Avandia (yeah!). Here's the plan she has for me since I have all these problems...She's going to do a laparoscopy and hysteroscopy in December (I'm a teacher and have to do it at break). She's going to laser all the endo. she can (the last endo. surgery I had was 4 1/2 years ago). She's going to do the hysteroscopy to look inside my uterus. In case you don't know (I really hate to add stuff to your list), evidently when you have PCOS, you have a tendency to have growths in your endometrial lining in your uterus. She's going to prep me to see them really well (by taking progesterone for several months) and cut them out if she finds any. Then, we're going to play the birth control pill game again and see if we can find one I can tolerate that will help and then I'll be on it continuously without the placebo pills. This is to buy time until I can try to get married and attempt kids (which is my main goal). I know doctors shouldn't say that, but she was truly being honest with me. So, I guess all I can do is say that nothing is easy when you have both...there's no real fix b/c of the problems the hormones cause...but I want you to know that there's someone else that knows what you're going through. Please feel free to email me at anytime and maybe we can find something that works! My email is Lisa.Wyatt@sbcglobal.net
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Post by Helen on Aug 20, 2006 15:21:31 GMT -5
Heya,
I know, it really sux to have both. since I know for a fact I am low in both hormones, but then I have to keep the estrogens down as much as possible. but its like I need estrogen badly since I feel menopausal alot. I am not overweight. I weight 50kg, not sure how much that is in pounds as I know Americans use Pounds instead of kg. But I am small and really light so Im not the typical PCOS person who generally is told to loose weight and change diet etc to improve symptoms. I cant loose weight I would be way too thin.
I have been on the pill for 11 years, I have gone off it 1 year ago and took natural progesterone cream for 1 year which did not work out for me since I bled all the time on it. so this is my first time in my life I am not taking anything, no hormones. just going to see how it goes. the PMS side of it sux. although Evening primrose oil is the only thing that helps. I try to cut out all sugar from my diet. its true what they say, sugr makes things worse, in my case its true, my hair growth gets worse, I feel worse hormonally and even my hormone levels fluctuate more, I can feel it. I sometimes think the best way to go about it, in my case it too try and control the PCOS and not both. There is things with endo that you can do to help it but I feel like PCOS causes most of my problems including the endo, so I figure I must just try to control the PCOS and not try control both cos otherwise its too hard.
also there are things diet wise that can control endo of course. I think one good idea is phyto-estrogens, that covers both things, PCOS and Endo. Good if you are low in Estrogen with the PCOS and will probably help endo. but at the moment I am trying to get a period every month, that alone I will be happy about since I have never been able to get one on my own before, and If I do, I bleed for like 15 days! the thing that gets me the most about the PCOS if the fluctuating hormone levels, its awful. I think maybe the trick is finding good supplements to control these things, there are supplements that are good for both PCOS and Endo, like Chaste Tree berry.
I think maybe getting my periods regular is a first priority, and then worrying about the painful side of the periods later. Ihave never really had painful periods that much because i have been on the pill so long. but who knows what they will be like now im not taking anything.
but I would def recommened evening primrose oil. I take 2000mg daily but I might up the dose. I hate PMS!
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Post by Helen on Aug 20, 2006 15:22:55 GMT -5
oh, and tell me more about Avandia, my hormone doc told me about it but didnt give me much info. how does it help? what symptoms does it help re the PCOS?
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Post by ouchy on Aug 20, 2006 18:47:21 GMT -5
I think maybe getting my periods regular is a first priority, and then worrying about the painful side of the periods later. Just having a regular period does NOT mean that you are ovulating, a very prominent symptom w/ PCOS. You can have a regular period and not ovulate. A first priority w/ PCOS is probably making sure that you ARE ovulating before getting a period.
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Post by lisa31 on Aug 20, 2006 21:16:56 GMT -5
Hey, Helen. Avandia is for Insulin Resistance. Have you been tested to see if you're insulin resistant yet? The majority of people with PCOS are insulin resistant and that contributes to a lot of PCOS symptoms. It's a very easy test...they draw blood, have you drink a real sweet drink, and then draw blood like every 30 minutes for the next 2 hours. If your doctor mentioned Avandia to you, he's probably thinking you are insulin resistant. I had no side effects when I was on it before. I liked it much better than Metformin (Glucophage). Getting off sugar is definitely a smart thing when you have PCOS. I get off it, get on it, get off it....I really struggle with it. My doctor said that when you have PCOS, sugar is like heroine. She said that the worst possible thing you can with PCOS is sugar and yet that is what your body absolutely craves! Isn't that terrible! I applaud you for focusing on only one (the PCOS). I am still going to try to battle both. Has your doctor told you about the polyps (or growths) we PCOS people often get in our endometrial linings (in the uterus)? I just found out about that one! Tell me what things you've found to help with the hormone swings....I'm really wanting to find something to help with that craziness!
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Post by ouchy on Aug 20, 2006 21:22:21 GMT -5
lisa, have you heard of stevia sweetner? It's a natural plant that is like 300 times sweeter than sugar when it is in powder form. It does not break down in to any carbohydrate (sugar) form, and it's pretty yummy! The best brand I have found is KAL. They've used it in Japan to sweeten soft drinks for years.
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