Warning! This blog discusses women’s issues, periods etc!
Last week i went to see what i thought was a hormone specialist… it turned out to be the sexual health & contraception clinic – which was ok as my main query was about my periods…
My main issue is that my periods really drag me down. This is nothing new, but the last 6 months or so i have seen a definite pattern in my symptoms, in that i have a “better” week (or sometimes just a few days) just before my period (when i can feel pretty good “at rest” and even manage to go out and about a little bit without major payback) and then just before my period i start to feel bad, feel very low in energy and everything is a struggle during my period, with all my bad symptoms of headaches, dizziness, muscle weakness, achiness, sensitivity to noise, etc etc and then it seems to take another couple of weeks to gradually get over the event and it all starts again.
The doctor i saw was a little confused as most people feel worse the week before, but has given me Norethisterone, a progestogen only pill to take, starting on my 5th day of my period and to take continuously (i am going back in 6 weeks or so for a check up). If it seems to agree with me, she said we could consider the Depo Injection… (very scared of that as heard it can have bad side effects and once you have it it can’t be undone). The idea is that my periods will cease and won’t drain me so much, although there may be some spotting and side effects (weight gain, bloating, spots, dizziness – just what i need!). They don’t know how it will affect me until i try so i am giving it a go, although not without some concerns. I am just hoping i don’t miss out on my few good days a month as a result!
I am willing to try it now as what i used to consider to be an ok/average day is now the highlight of my month and my general level of functioning has gone way down. My hormones may not have much to do with this but my period seems to be just one more burden on top of all the others that i really could do without. Unfortunately there does not seem to be a magic answer so i may be making things even worse but don’t know til i try.
Progestogensare like natural progesterone but are synthetic hormones and are not without controversy and i am not entirely comfortable with “polluting” my body and messing about withit when it is evidently already struggling to function, but it is worth a try. I also hate taking things then wondering if my odd symptoms are due to side effects of a drug or if they are the ME, and not knowing how i would be feeling without taking it…
Dr Sarah Myhill does not recommend people with ME take the pill, but she does not really talk about what to do about period hell either so i don’t see any obvious alternatives! She talks more about contraception, which is irrelevant to me as a lesbian. She does say Progestogens can cause depression. I have not been depressed the last couple of months so will be suspicious if i suddenly get down. I have been taking Agnus Castus for a long time, which is a herbal remedy and which definitely helps with keeping periods regular and i think make mine last for less days as well. I had stopped taking it last month in case the hospital wanted to take any blood tests and my period was late this time, which has not happened in a long time, so i think it certainly is worth a try for anyone not on the pill who has issues with PMT etc. (Kira brand has seemed best to me).
So, my period came today! I am so happy as it is 3 days late and have been feeling very premenstrual, as well as having bad (and different to usual) leg pains – from my hips and down the sides into my knees and beyond! Also i usually get bleeding gums when i clean my teeth around the time of my period (who knows why) but yesterday when i got out of bed in the afternoon and sat in the next room chatting to my girlfriend, my gum spontaneously started bleeding into my mouth! It stopped quite quickly but was quite copious there for a minute. Yuk. I even started looking through the kitchen cupboard yesterday and throwing out all the out of date rice, dried beans, etc. “Nov 2007? looks ok… 2006 throw it out!” typical PMT behaviour…
This means that i need to start taking the new tablets on Saturday… 3 times a day! Better make a ticky chart or i will forget whether i have taken them or not… I am just hoping that i will never have to be that woman again who constantly talks about her periods, when she is due, how bad she feels, blah blah so boring, but recently whenever anything is happening (an appointment, visitor, etc) i have to check my diary and say whether there is any chance i will be feeling even half up to it… but how much of a long term solution is taking this pill i wonder? Surely i can’t just take it forever? How messed up will my hormones be after taking it? Hmm.
The other thing that i wanted to talk to the hormone specialist about (turns out i need to see a separate Endocrinologist for this) is to discuss the chapter in Fatigued to Fantastic! about hormones and ME (see previous post). The doctor i saw at the sexual health clinic said that there is a doctor at a local hospital who is interested in people who are slightly sub-optimal in various hormones and the effect that can have but that she did not think they would try treating me even if i am as they tend to have a “hands off” approach. This means “do nothing in case you are sued” approach, or a “NICE guidelines say NO if you have ME” approach, i can only assume… So if Dr Teitlebaum is right about hormones and ME/CFS then i will probably never know. I could try to get referred to that doctor but i don’t expect there is a lot of point in wasting my energy and taxi money. This is a bit disheartening as i am doing everything else in the book (taking supplements for my mitochondria etc) but if there is a hormonal problem holding me back i can’t do anything about it myself… what is the point of trying to help myself if i can’t get any professional support/expertise?
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July 2, 2008 at 11:09 am
rachelcreative
It’s so difficult to know whether you feel better before your period because the hormonal levels are right or if you feel bad during and after your period because of the strain of your period. So maybe you feel better before you period because you’ve recovered from the last one or because of hormones.
Frustrating. I hope taking this pro-estrogen pill might shed some light on your theories even if the right docs aren’t able/willing to figure it for definite.
I suppose if it is a case of feeling better because you have recovered from your period the pill would be a way to stop your periods (if you take it without a break) and see if that theory holds up before having the injection. Lots of woman have the pill for reasons other than contraception. I have suffered from depression and the pill never had any effect on mental health and I never noticed weight gain either. But with ME we are more sensitive so who knows!!
I do feel worse when I am on my period. It’s not as devasting an effect as you get but I my energy is very low. I’ve always had period pains (except not so much when I was on the pill) so added to ME it is not nice at all and really exhausting.
My mom has had breast cancer and it was a pro-estrogen kind so I would be wary of taking that medication she’s given you. But that’s my family history of risk factors and not yours! Just saying.
Oh yer and about gums bleeding around your period. I told my dentist that my wisdom teeth ache when I have a period and then another tooth too. She said that because of all that blood pumping around it can mean any sensitivity or infection in your teeth/gums can flare up around this time. It kind of made sense and kind of sounded a bit odd – but she is very skilled and I trust her. Anyway – there may be something in it. Blood volume is up (or something like that) and it means problems not normally detectable can feel worse?
Sorry (again) for ridicously long comment ;o)
July 2, 2008 at 11:44 am
ashysheela
Hi!
maybe my blood volume being up is what makes me feel ok just before? I had my blood pressre checked at hospital and they said it was fine, and that was in the build up, and usually they say it’s a bit low… i don’t understand the numbers though and can never remember what it is/was to make any sense of it
Some nasty blog has stolen this blog post and put it on their own word for word with no link to me… it was listed as an incoming link on my my blog… i feel violated! anyway that is just an aside!
The pill is just progestogen, no estrogen involved altho’ i expect there are cancer risks attached to that too… that is one reason why i am sceptical about it’s suitability as a long term solution… no close relatives have breast or other cancer i don’t think.
no need to apologise i like your long comments and they are always to the point (unlike my loooooong responses)! The doc seemed to think it was not a hormone issue that made me ok just before… maybe i will suggest the blood pressure theory to them when i go back
The pill is supposed to raise blood pressure i think so that may be good…
we’ll see!
July 2, 2008 at 2:35 pm
Rachel M
My doctor suggested to stop period to prevent my shoking PMS. (Before him, I was just told to take Vitamin B12 and just live with it…) So, I’m on the pill without break at the moment.
It could be just my imagination, but I feel my body still has hormonal cycle. But the effect of PMS is less after I stoped the period, so I’m happy with it.
I’m suspecting the TIA-like episode I had may have something to do with the pill. Since it was one time only incident, I am not worried about it at the moment. I feel anxiety would do more harm, anyway. At least, my doctor is monitoring my condition fortnightly, so I can tell him if something is not right.
Please keep us updated. It is interesting because your case may not be hormone related…
Someone was stealing my blog, too. They use RSS to automatically post my blog to their site. I felt I was violated, too! All I could do was to leave comment on their blog, “Stop posting my blog here.”
I hope people will realise it is very rude to do so especially without asking for permission.
July 2, 2008 at 3:57 pm
ashysheela
hi rachel m,
well you may still have a bit of monthly hormonal cycle… i am glad it is not too bad though.
what type of pill are you taking? It sounds like your periods have successfully stopped? That must be a relief… Glad your doc is keeping a close eye on you after the TIA though.
I don’t think the blog-stealers care about being rude… but i will try to appeal to their conscience! it is such a wierd thing to do… mixing random voices in one place… i am hoping it is a one off thing because i mentioned a drug brand as it seems to be viagra related! ahh well.
July 9, 2008 at 2:13 pm
Rachel M
I tried Loette for two months as doctor gave me sample to try. TIA-like episode happened while I was on Loette.
After the initial two months, doctor prescribed Leveln ED. I am doing okay without migraine or TIA-like symptoms.
Period has stopped without any trouble. But I still feel the hormonal cycle as in regular ME flare up without any reason. Hoever, it is not as bad as before I started the pill.
As for the blog stealer, I posted a Creative Commons warnings on my page. http://creativecommons.org/ I don’t think it has real power to stop the thief. But at least, it shows that I will be upset if someone steal my blog…
July 9, 2008 at 7:00 pm
ashysheela
Thanks Rachel, i saw the creative commons on your site and meant to explore what it was about before! Will put on my to-do list
So far i have not had any side effects of taking my pill, (it’s only been a few days) but wonder what will happen when i am due “on” – we shall see!
I am planning a trip away around that time so it could be challenging! I like to live dangerously (not). I am glad things are better for you taking the pill than not, shame about the monthly flare-up! An excuse to eat chocolate (or whatever you crave) though!