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Nicole's hormones are a mess- PCOS, etc.


Nicole's Mom
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I think to some extent this has been discussed before but here's the problem. It's about POTS and menstruation and while we're at it let's throw menstrual irregularities into the mix.

Nicole has PCOS (polycystic ovary syndrome) which automatically means a constant struggle with her hormones to try and get them on an even keel along with menstrual irregularities. She has been to a specialist - who cannot offer much except that Nicole takes the Pill to try and help. Sometimes Nicole has breakthrough bleeding which ends up being a full blown period. Anyway recently for two months she got her period at the proper time with the Pill cycle and each time went downhill from whatever the period does to women with POTS. Then last week she started the Pill again and within 4 days into the Pill she began spotting and then suddenly she had her full blown period and hadn't even recovered from the prior period. She's already so debilitated that to go downhill from her period constantly isn't helping her at all. By the way she had asked her local doc for a higher estrogen dose of the Pill to hopefully stop the breakthrough bleeding and he said he would only give it to her if he gave her a gyn exam which she does prettty regularly but she put it off a bit (that was before this relapse within the relapse while she was climbing out of the May relapse). Anyway now she can't get there at all for the gyn exam. She hasn't seen the specialist in a long time as there was nothing further to gain and has relied on the local doctor to give her the gyn exams.

So when I last wrote to this forum about Nicole she was about to get IV saline for a day and then she nixed it because she never ended up heaving. And then this whole period business had made her feel so awful - (plus she is affected by her period way more severely of late than before she was so sick in this present relapse)- so she asked the local doc again for the IV and got on it for a week which is almost up- in two days. So here she has been on the IV saline and got her period again (on top of the prior one) and hadn't recovered physically from the other which erased the benefit of the saline and took her down even more in several ways.

I am wondering very strongly if maybe Nicole is a good candidate for that period suppression treatment. I called a relative who knows a mid-wife with her masters degree from Yale. This midwife works at a local hospital delivering babies and she also knows a lot about many gyn issues. She has agreed to call Nicole on Thurs. to discuss ways in which a woman can suppress her period. I don't know if these are natural and/or pharm ways.

Do any of you think after what I just told you that suppression of Nicole's period might help her get a foothold on climbing out of this bedridden state she's in? The midwife won't write the prescription so how we get it will be another matter. My brother who is a (recently retired) pharmacist just told me that there is something called Seasonal which is a patch I think that suppresses the period for 84 days. And the midwife may have a few suggestions.

How about you all? How do you fare that time of month? I know it depends on your state of health as to how susceptible you are to downturns from periods. Or maybe some of you don't get affected. I have seen it twice in the POTS literature -(ony a few sentences here and there) that periods make a POTS woman worse and sometimes suppression is tried. If you aren't sick of discussing this would you mind giving me some feedback about yourself and maybe your opinion about what I told you about Nicole and should she try to suppress her period as it seems like a major factor that is keeping her in the bedridden state. Also do any of you have menstrual irregularities or do any of you have PCOS? Also I can't help but wonder if there's a relationship to the severity of this illness to the severity of menstrual irregularities. It's not like Nicole bleeds heavily. Her recent hemoglobin count was actually normal. Any iron she takes helps in that way.

Also if any of you know of any links that really go into detail about hormones and periods and worsening POTS it would be so helpful then I could show it to Nicole before her phone consult with the midwife.

Anything you could offer will be so appreciated.

Thank you,

Beverly

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Dear Beverly, I am so sorry that Nicole has been having such a difficult time recently to put it mildly. Yes, I definitely get worse premenstrually (up to 4-5 days ahead of time-each day progressively worse until I do get my period) and I also get worse middle of the month with ovulation. I had irregular periods and heavy bleeding when I first became ill with POTS 2 1/2 years ago. I had my period for 2 weeks very heavy then off 2 weeks then on 2 weeks and off 2 weeks and on 2 weeks. I ended up getting a D & C and told that my symptoms were related to perimenopause. I was prescribed Alesse ( a birth control pill for older woman) one month and almost had a stroke I had such a bad reaction to it. The next month I was given Prometrium, a progesterone only pill and ended up hospitalized for the duration of m period ( nobody knew I had acute POTS at the time). The next month I was give Lupron to suppress my period as my son was getting married when I would be expecting my period. I took 3 injections 28 days apart for a total of 3 injections and I didn't get my period for 6 months. I was told that it would put me into menopause but no such luck. When my cycles started up again it seemed like I had a horrible relapse like when I was first ill. I continued to have regular heavy periods which always made my symptoms worse and sent me to bed, but last month I didn't stop bleeding and needed a D & C which was somewhat scary, but I did fine. If I get nonstop bleeding again, I will probably opt for a vaginal hysterectomy if I have to go under general anaesthesia again. The heavy bleeding just contributes to hypovolemia and the hormonal fluctuations totally destabilize me. I did become anemic last month and took iron pills which made me feel a little stronger. There is some controversy with Lupron injections and how many one should have before one is at higher risk for certain kinds of cancer. It might help initially but I fear that she may relapse just as bad as I did when my cycles resumed. One of my daughters(24yo)tried Seasonale because she has heavy periods but couldn't tolerate it for even a month . She went back to Jasmine ( a different type of BCP) which seems to give her less side effects. She was told by the gyn doc that in certain instances she could just take the Jasmine back to back without getting a period and not to worry. It could be that Nicole may need to try a different BCP to control these symptoms. I wish I could wish these issues away but it seems like it's a definite contributor to worsening of symptoms. Take care. Martha

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Beverly,

My worst times are definitely before and during my period. My onset of POTS was during my period, my 3 ER trips have been during my period and so were my 2 big relapses. I have thought about taking birth control pills and/or stopping my period, so I would appreciate any articles that anyone provides. I am hesitant due to the side effects, and because I fear triggering another re-lapse. I have not yet recovered from the last relapse 3 months ago, and I am scared of making myself worse. But on the other hand, taking a risk may pay off for Nicole. It's such a judgement call with trying any new treatment or medicine, I guess. Since you have a good POTS doctor, maybe it makes sense to get his input?

-Rita

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Martha,

Thank you so much for your response. Wow you have been through a lot with menstrual problems. I am so sorry. I know how debilitating these problems can be. And now your daughter has heavy periods. It's so difficult. I had never heard of Jasmine. I will have to read up on it. You've tried so many things yourself. What kind of side effects did your daughter have on Seasonale? They must have been awful that she could only bear it for a month. It seems like in your case your menstrual problems kicked up after POTS came about yet you were also in a perimenepausal state. It seems there's is a loop. Hormonal changes makes POTS worse and in turn POTS exacerbates hormonal problems.

I agree- Lupron has sort of a bad rap. You are lucky you didn't have any immediate effects from that. I am glad for you about this. I know a couple of people who did have immediate bad effects and it wasn't good. I know you are discouraged that it didn't put you into menopause- but that may have made another set of problems for you. I've heard of this first hand. Maybe that was for the best, actually.

Thanks again, Martha, for your thoughts on this subject. I am now off to the grocery store and then to Nicole's for a few hours.

Wishing you well,

Bevery

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Rita,

I literally had one foot out the door when I saw your response. You are just validating everything that I see in Nicole. It seems like we really need a "remedy" to help with the menstrual chaos. Perhaps that midwife knows of something natural. Whatever I learn from her via Nicole I will pass along- if it's anything new or good. And in the meanwhile maybe there are some links or things we haven't heard of that will show up in a post or two here.

Best Wishes,

Beverly

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Martha,

I was just re-reading your post and I wonder if I might ask you to clarify something for me. When you first got ill with POTS you said you had heavy periods and irregular bleeding. I know there's also the perimenepausal situation that you mentioned. I feel like I am getting so personal - but I was wondering if you had menstrual problems when you were younger like the way your daughter has heavy bleeding at the age of 24. You've certainly really run the gamit in the past 2-1/2 years but I was just wondering about before that - were you normal- if you would be so kind to tell me.

Thank you so much,

Beverly

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Hi again. I have always had heavy periods that lasted 5-7 days. Both my daughters (23 & 24 yo) do as well and they were put on the pill so they wouldn't miss school. I also have 4 first cousins (all sisters) of my mother's sister that faint on the second day of their cycle since they were tenagers. I have suggested they have a tilt table test but I don't know if they have. I didn't have POTS symptoms (that I was aware of) until 2 1/2 years ago however I always felt great when I was pregnant (I have 4 kids). I may have spelled the name of the other bcp wrong --it may be Yasmin. I was told at NIH that there is an increase in adrenaline premenstrually and at ovulation normally for most women and we are extra sensitive to its effects. I hope Nicole will feel better soon. Martha

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My doctor has been trying since July to stop my periods. I bleed for 27 days recently and had 5 days break. Sunday the bleeding started again. This morning I woke up to the joy of menstruating AGAIN. I would lie if I told you how many tablets I have been on. Since July it has been 3. The first one made me exceptionally aggressive and the next two cannot stop the bleeding. My gyny had me on "tablet?" to stop the bleeding but it only worked for 5 days. The reason we are trying to stop my bleeding is due to my Endometosis. I had an operation and they discovered Endometriosis and badly damaged F. Tubes. I am so sick of all this rubbish to be honest. Why can’t we at least have some part that is normal in our lives? I have allot of pain when I menstruate. Like a knife between your legs on both sides.

My point to all of this is I am suppose to bleed 3 times a year on this system.The pill. The reason for them stopping the bleeding is that every menstruation cycle worsens my Endometriosis. The changes of me falling pregnant don’t look good at all. So they are trying to pause the damage as it is and hope that I can fall pregnant. I must mention you feel the addition of the pill immediately on your health. But you get use to it. We are all use to being sick everyday and you will just build up a new level of feeling sick. I hope your daughter does not react like me. But this is what I am going through at the moment. My gyny wold like to put me on the loop as soon as I have children. Apparently it will help me even more. The skipping of the red pills is just to stop me menstrating. One day I guess it will start working!!!! ;)

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Beverly,

I, like many others, get much more symptomatic around my period. The week before and a few days after my period are always the hardest days each month for me in regards to my POTS symptoms.

You had metioned Seasonale, and I wanted to comment about that. It's actually not a patch (although there are birth control patches) but a pill. You take the pills for three months and then take inactive pills for one week so that you get your period. The thought is that you only get your period 4 times a year (once each "season"). I thought that this drug would be really helpful since I wouldn't be getting as symptomatic because I wouldn't be having my period, so I tried Seasonale this summer (on the recommendation of my POTS doctor and a OB-GYN). The first month I was fine, but about half way through the 2nd month I started to get really bad cramping. For a few days I experienced the worst cramping I have ever had. I could barely walk or stand up, all I wanted to do was lay in bed. I ended up passing a 5 inch blood clot (sorry to be graphic). It was horrible. Needless to say, I stopped taking it.

I also tried Ortho- Tricylcen Lo which is supposted to have a very low occurence of side effects, but I experienced bad cramping with that one as well, and so my doctor told me to stop taking it.

All people react to birth control pills differently, and I just do not react well to it apparently. However, Nicole may be fine if she took Seasonale... I just wanted to share my experience with it.

Hope that she's feeling alright!

~Meghan ;)

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Thank you Ling and Meghan for your responses. I wish that you had better experiences to report - it sounds like you've been through some tough times and still are. I understand- believe me-as you know I see the problems in Nicole.

Because of my own menstrual problems I know how inconvenient and extremely troublesome such problems can be. That is one thing. But then for someone to have such a difficult illness that is so tied into hormones - and then to read the posts here and see that there is no easy solution. And that treatments in themselves can cause ill-effects is very disheartening. I don't mean to sound negative but this POTS and periods seem to keep up this constant catch-22. And when someone is so sick how does one move along in health when they keep getting tripped up in this one arena. A 5 inch clot and an emormous amount of cramping says a lot. I know that everyone react differently to different remedies and drugs but that sounds scary.

Ironically the reason Nicole went to begin with is that she was NOT getting her period as a teenager and at first a glib gyn said oh it's just stress- he didn't even look into anything - just said it's stress. But something didn't seem right to me so back then I took her to an endochrinologist who discovered the PCOS and that Nicole had hormonal imbalances. The doctor told Nicole that she must - absolutely must take the pill to get her period because if you are putting out estrogen each month but don't get a period it could develop into uterine cancer.

Also I have to say that the two times Nicole went off the pill - the first time she went off - the onset of POTS came on within 2 months but she didn't see a connection until the next time she tried to go off she had a major relapse. Plus she learned of another gal who went off the pill and then that's when her onset of POTS came on.

Anyway - thank you to all who have responded - you have given me some useful information by sharing your own experiences.

Beverly

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beverly,

i don't really have time to write right now...

but i did want to say that since nicole already tolerates the pill fine...

i thought this might help...

i tolerate it well and went on it long before POTS due to miserable periods.

since POTS i tried to go off of it, but no luck.

i take Alesse and i take it CONTINUOUSLY with no break, EVER!

first i did the schedule like seasonale, then, just stopped having a period completely. my POTS doctors and ob/gyn agreed to do this given that i am so low functioning anyway and was worse for two weeks out of the months that i had my period.

i still have a lot of breakthrough bleeding and spotting, but i don't really care. i could up my dose to a different pill with more estrogen, but since this is working for the POTS symptoms, i wll take a little bleeding right now.

seasonale is just a marketing thing really...it's just a low-dose pill marketed to have a period 4x a year instead of 12x. you can suppress your period with any low dose pill. and each pill will be tolerated differently.

okay, gotta run.

hope this helps.

emily

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beverly,

maybe nicole's cardio/pots doc would agree to prescribe it? or whomever is prescribing it now?

some ob/gyn's are more liberal on period suppression than others...just depends. i did my research and decided the pros outweighed the cons...

in the grand scheme of things even suppressing her period for a few months would let her know if it helps or not. then you decide from there if you want to keep suppressing it. that's the long and the short of it from a former health/sex education nut. i love this stuff!

as for the pill she is on now...if it is reasonably low-dose...she can just stay on that one and skip the placebos. that way she wouldn't have to change the version of hormone she is getting...

i think there is a website noperiod.com...but don't forget it is a one-sided view...

i could go on forever about this...but i feel way too crummy. oops, sorry, couldn't suppress that whine....

emily

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Beverly,

I also have cysts and fibroids, and used to have crazy, irregular periods. I now use natural progesterone cream (you can buy at a health food/supplement store). The creams with real, natural progesterone (not just wild yam) have been successful intreating women from PMS to menopause. It really works to balance the hormones naturally. Synthetic hormones can be very bad for the body and have all kinds of consequences, not to mention increased risks of certain cancers.

My gynecologist always said that it's important that you have a period at least 4 times per year to lessen the risk of uterine cancer and endometriosis. It's important that the lining be shed. Otherwise it builds up and that's not good. I know Nicole feels miserable having so many periods but maybe if you could balance her hormones, the periods wouldn't have such a bad effect. There are also many herbs that balance hormones such as dong quai, black cohosh, false unicorn, blessed thistle.

One final note, I just want to say that I think you are a wonderful, caring mother and Nicole is lucky to have someone look out so much for her best interests. I'm sure that caring for her isn't an easy task, but it's obvious that you do it with so much love and concern. I applaude all of the research and questions that you ask. I hope you find a solution to ease her discomfort soon :)

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Thank you Emily- I found your website which led to others. I really appreciate it your help- You're very kind. I know how hard it is for you to type sometimes.

And Gena- thank you for your reply and your kind words. I actually use progesterone cream myself and you are right about the benefits. I will definately research the other herbs you mentioned. I also have to learn more about PCOS as that is a condition where there's too much of the androgens.

It's interesting what you said about the need to shed the lining of the uterus. I was wondering about that. I think it makes sense to have one's period 4 times a year- shed that uterus. I think that if Nicole could go three months without a period and without ups and downs from hormones she might stand a better chance of making some progress forward. I mean she has in other relapses made progress with such hormonal chaos but this is a really bad relapse and I'm just looking for ways to make the ride a little more forward without so many steps back.

Again- thank you.

Beverly

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