Do you plan on having kids? My husband and I have had our two.
What eventually worked for me was a combo of things totaly different from what your doing. (so sorry a bit off subject). I had an endometrial ablation done. That got rid of the menorhgia and the physical symptoms that go alone with that (ie. cramping, bloat, back aches.) A long time ago they put me on Lexapro and that really helped to even me out (still got a bit bitchy monthly though, but nothing like it used to) So after endless amounts of go arounds I finaly found a decent solution.
Then, totally unrelated (or so I thought), I had been having acne problems since having my kids. I thought it was hormonal, but lo and behold it was because I have been off birth control since having them. So they put me on ortho tricycln lo. It helped w/ the rest of the symptoms I had left over from my period. I now am symptom and period free. I do however have weight gain around the middle, swollen boobs, and no sex drive. But considering what it is like when I have a period... I'll take it and force my self to have sex with my husband. (not that i don't want to but there is no drive.) personal, i know. sorry.
So if any bits of that can help you... I hope. I wish i would have heard of or been sent to a "Reproductive Endocrinologist" that probably could have helped me before i had kids.
I think it's unrealistic of me to think I would be able to handle a pregnancy, considering how insane progesterone makes me (and I would be full of it when pregnant.)
I really wish I could tolerate any birth control but it's all made my symptoms infinitely worse. Lexapro on its own just isn't enough either :/
I asked about the endometrial ablation but my dr. said he thinks that could lull me into a false sense of security about uterine cancer - because most ablations don't remove 100% of the uterine lining so I would still be at risk.
You're right, it doesn't remove all of the lining. I must have a bit of a different situation. I was actually great pregnant! I thought I'd be a hormonal freak! I felt so good! I think just because I wasn't having the up and down. I really feel for you. I think we are cursed as women and there doesn't really seem to be many answers for us. It is just hard enough to get someone to take our hormonal issues serious. Good luck, I really do sympathize
Contraceptive medication never uses progesterone, but rather uses progestogens (called progestins in the US), which are a different hormone to the one naturally produced in the body. They're actually closer to testosterone than they are to progesterone, and while some women report that they help with PMS, most find that they make it worse (including myself). Progestogens are also reported to suppress the production of progesterone in the body. It's unfortunate that progestogens and progesterone have become muddled in the public mind, even to the point of being conflated in official articles and websites about contraception, since for people like us the difference is crucial. So having been on progestogens does *not* reflect how you may cope with pregnancy. On the other hand, PMDD sufferers are apparently high-risk for post-natal depression.
Some doctors are using progesterone to treat PMDD, but it's fairly controversial. It doesn't work in pill form, it can be applied in various other ways including suppositories, injections or a topical cream. You may want to look into trying progesterone instead of progestogen to see if you tolerate it any better. The prescription form most commonly used is called Cyclogest.
Hysterectomy won't cure the PMDD, and can apparently make it worse. If you don't get your ovaries removed, then your biological cycles are still running. If you do get your ovaries removed, then you're dealing with early menopause, which is no joke.
Basically, yup. ^--^
Also, I have the same problem (ie progesterone either it's production or how the GABA(A) receptors are receiving it) and the entire reason for my PMDD is the fact that I took a "progesterone" (progestin)-only BCP.
I have never bothered to see a endocrinologist (although I am curious, as yes, functioning more than half the time would be a nice change), mainly because unless they happen to be a neuro/psychopharmaendocrinologist, I'm not sure what they could do (and those are rare and the is still very much in the very, very early research stages, as far as I know--hell they are just starting to ask questions about different _types_ of progestins . . . .).
I actually go to a Reproductive Endocrinologist at a (mostly) IVF clinic at Johns Hopkins, at the urging of my mental health professional. I specifically found one that specialized in (and had research interests with "Menstrual Disorders." I had tried gynecologist after gynecologist for years and they all told me to take more birth control pills (which never worked and always made it worse).
It has made the biggest change in my life, though. I was pretty much unable to make it through college because of my PMDD, and now I am working full time and going to school part time and having a social life instead of sleeping 18 hours a day and being insane inbetween inhaling gallons of ice cream. Also, I had become severely hypoglycemic, and now that has completely gone away.
It seems in my case there is something of a genetic component, my mother shares my symptoms. When I started to go through puberty there was an extreme change in my personality and ability to function as well.
My reasoning for the uterine removal was so that I would be able to continue with the unopposed estrogen therapy and not have to induce periods at all or heighten my risk for uterine cancer (I also have to have uterine biopsies with the unopposed estrogen every 6 months which is not fun). I was unfortunately pregnant earlier on and it caused a total heightening of my symptoms and for me to be extremely suicidal so that's why I assumed the progesterone was the issue.
I'm glad you found a finally found a dr that 1)cared 2) and actually seemed to have really helped you. (I _wish_ I could find that.)
The natural progesterone your body makes usually makes things like anxiety actually better, hence when it spikes and drops off, not so fun.
But obviously you can have PMDD symptoms for many reasons. It is one of those "conditions" that covers a vast number of symptoms in a (somewhat) shockingly unexplored medical territory.
I still don't know if I would recommend the surgery (nor suffering) . . . your body is still producing the hormones (plus the ones you are taking), you are also at risk for breast cancer as well . . . but if your current treatment is working and this is a serious risk (for example if you also have a family history of early-onset cancer, etc.) then obviously that is a decision you have to make with your dr.
Thanks! It's weird, actually, when I first went on Lupron (we did a 3 month trial of Lupron with no hormones added back) I had the lowest anxiety levels ever. The physical symptoms were unpleasant, but mentally I was great. Able to stop taking anti depressants even.
This article is interesting for its explanation of PMDD (which seems to be right on par with my case, that when my brain is stimulated by estrogen, the dopamine levels begin to drop, and it can be very dose dependent for me.)http://www.medscape.com/viewarticle/560697
Yeah, I have no history of breast cancer but I did have an aunt with cervical cancer as well.
Thanks for your response! Don't give up on looking for a doctor or treatment, it can be found!! :)
Cervical cancer is in a different group, don't worry. Breast cancer, bowel cancer, and they've added another but I can't remember what it is (ovarian?) are the ones to worry about in your family history. My mother's had breast cancer and worries that I'm high-risk, so she's had me checked out by the genetic screening people, who looked at my family history and said I wasn't even high-risk enough to need genetic testing.
It's really nice to speak to some other people who are knowledgeable about this sort of stuff. I try to read everything I can get my hands on but at some point it becomes difficult to understand because I'm not a biologist. I really appreciate the replies.
Do you still think that I should try the Cyclogest?
Has anyone had any experience with Mifepristone? My doctor briefly mentioned it but said it was still a very experimental treatment, and then I read in the article above that it didn't seem to correlate with any PMDD symptom improvement.
I'm not a biologist either, I just have a paranoid mother. You evidently know far more about different sides of PMDD treatment than I do, I think we all have our specialties. Anyway, the rest of my answer is in another comment.
2011-02-14 02:00 am (UTC)
I also have the most wretched PMDD and am totally allergic to progesterone. I am thinking about trying mifepristone. In the one study they did on it for PMDD they gave it every other day starting 4 days after the LH surge. I think it would work if taken continuously. Did you ever end up trying it?
Thanks for info - I (unfortunately) have been pregnant before and it caused all of my symptoms to intensify massively so I assumed the progesterone was at fault there as well.
I have tried Premarin, norgestimate, drospirenone and desorgesterel as well as the Climara Pro patch and these all have caused symptoms to reoccur.
My reasoning for the Hysterectomy (uterus only, not ovaries - I may be using the wrong term) wasn't to treat the PMDD, but rather, to make it safe for me to take the Lupron + Unopposed Estrogen without risking uterine cancer.
Despite the fact that suppressing my hormone production is essential to my treatment it seems, I completely agree that I still want my ovaries because early menopause is such a serious thing.
2008-09-07 02:21 pm (UTC)
Good grief, this has turned into a novel!
I was on desogestrel, it was horrible. So was dydrogesterone (Duphaston), which I was actually put on through a misunderstanding when I'd originally asked for progesterone.
Have you considered trying Mirena? It's a much lower dose of progestogen (levonorgestrel) because it's delivered in the uterus, and is meant to have a relatively low rate of side-effects compared to other hormonal contraceptives, if not the lowest. As well as being popular for contraception, I believe it's becoming increasingly popular for menopausal women to balance out HRT treatments. It's also the most effective contraceptive in existence, bar actually taking out your bits. iud_divas
is a good place to find out more about it. I've seen research articles about how Mirena has been used as an alternative to hysterectomy for various things, and while I think that was more often about fibroids or severe dysmenorrhoea, some of it may have been about menopause as well. I've just googled Mirena, menopause and HRT, and loads of stuff came up. Try looking up Dr John Studd, he's a gynaecologist in London who uses Mirena plus oestrogen to treat PMDD. He discusses progestogen intolerance on his website here
, and here's a useful bit:Cyclical progestogen is necessary but if this produces problems because of progestin intolerance, a shorter duration of 7 days rather than the orthodox 12 days should be used. This duration is adequate to prevent endometrial hyperplasia. It is recommended that the progestin is taken for the first 7 days of each calendar month with withdrawal bleed occurring on about day 10 of each calendar month. Alternatively the weaker preparation closer to a natural progesterone uterogestin should be used for 7 - 10 days each month. This is the only place for natural progesterone in the treatment of PMS.
If the problems of progestogen intolerance or irregular bleeding remain, the use of a Mirena IUS is of great benefit as it is a local intra-uterine application of progestogen will produce endometrial atrophy and amenorrhea without (usually) any systemic absorption that may produce symptomatic side effects.
Do you have any idea what dose of progestogen you need to balance out the oestrogen? Because Contrel in Belgium are developing lower-dose hormonal IUDs (Fibroplant and Femilis), so if you, say, try Mirena and find that you'd be better off with the same progestin but a lower dose, and if you can afford it (and clearly you're so desperate you'll do anything you humanly can), you could go to Dr Wildemeersh in Belgium and get a lower-dose IUD. I've actually corresponded with him by e-mail when I was looking into the GynePlant, a new type of IUD which combines copper (for the contraception) with a tiny bit of hormone (just enough to make your periods lighter rather than heavier, but not enough to stop them or give you side-effects), and he was very helpful.
As I said, you haven't been taking progesterone, you've been taking progestin (to switch to US terminology), and that's not the same hormone at all, whatever some doctors may say. When I was on Depo-Provera, I didn't get pregnancy-type symptoms, I got menopause-type symptoms. The medications which mimic a state of pregnancy in your body are the combined pill. (Premarin, by the way, is oestrogen. Horse oestrogen: I've heard it suggested that it's not the best oestrogen for humans because the hormone is slightly different, you may want to check out that side of things.) So possibly you react badly to *both* progestins and progesterone, but hold on there. Progesterone absolutely floods the body during pregnancy, and the level in the blood is higher than the dosage of progesterone which would be used therapeutically (which is also a flexible thing: the dosage in Cyclogest, the suppositories, is about twice the dosage used in Crinone, the vaginal gel). Some people feel that progesterone is better than progestins as it's the same hormone you get in the body and generally plays better with it, but unfortunately it's been researched a lot less. Dr Katharina Dalton was the one who pioneered progesterone treatment, and incidentally treated my mother when she was having trouble conceiving. The National Association for Premenstrual Syndrome
in the UK is fairly keen on progesterone, and incidentally has a useful forum I'd suggest cross-posting this to.
You can also get progesterone creams, but they'll be too low-dose for your needs, plus the market there is a bit dicey, they're not regulated in the way that conventional medications (which includes Cyclogest and Crinone) are. I'm currently playing around with a progesterone cream alone, as it's a popular treatment for PMS, and if it works but isn't quite effective enough, I'll ask my GP to try me on a prescription progesterone. I'd have gone for the prescription progesterone first, but they're relatively high-dose and since I have severe ME/CFIDS and react badly to pretty much all medication, I need to be cautious.
Progesterone therapy is still fairly controversial, but quite frankly I think all PMDD therapies are. The gynae I saw assured me that desogestrel was the best thing ever for PMDD, but when I did some homework, the research has actually shown that in most cases it makes it worse! Progestin therapy for PMDD has been popular for a while, but by now most articles I find are concluding that it's pretty damn unsuccessful. You just have to keep researching and keep trying new stuff.
Since you've found a good doctor, I'd suggest spending a bit more time exploring the hormonal options before considering something as severe as surgery, and I'd ask if you can try treatments such as Mirena or progesterone. It's probably best to mention brand names such as Cyclogest if you want to try progesterone, otherwise your doctor may assume you mean progestin and put you on another progestin, like my GP did.
Thank you so much for this info! I will request Cyclogest when I go. We did discuss the Mirena, but my doctor seemed to think that because I did so badly with the medroxyprogesterone and also the ClimaraPro (which is estradiol and levonorgesterel, and I had a resulting breakdown in less than 3 hours after I put that patch on.) that I would react badly and probably be out $500.
My doctor gave me medroxyprogesterone last time (2.5 mg) and told me to cut them in half and take them for 10 days. I made it to 8 and still wanted to die.
When I first saw him, he said he wanted to try either Lupron, and then adding back hormones to see which one caused my symptoms, or Depo-Provera. I said that I'd rather try Lupron because I could always stop it, but a dose of Depo lasts for 3 months. I had always thought Depo was going to be in the same family as the progestins I was having trouble tolerating. Maybe I should ask to try an oral dose of Provera and see if that causes different symptoms?
I definitely will discuss these other options with him. He actually published a book called Alternatives to Hysterectomy and does seem to be very committed to trying all of these other options before even discussing the topic of surgery, (but I wonder how realistic he is being, because when I said I didn't think I could get pregnant without having problems, he suggested using a surrogate mother as the most viable alternative which seemed a little excessive to me when there are kids out there who won't have my genetic issues who also need homes too).
Sorry if I'm getting the progesterone/progestin terms mixed up, it's still a little unclear to me. I wouldn't be opposed to going to Belgium for an IUD if that might be a viable option - the way I function normally is just no way for any human being to live.
Thank you again!!! I will check out the various links provided for me.
Blast, I'd forgotten the problem of IUD costs in the US.
Depo Provera is contraceptively effective for three months. The effects can actually take up to a year, even two, to wear off, and it's got an appalling reputation for side-effects. I'd suggest trying methods which are easier to stop first. Also, I believe you're correct: Depo Provera is medroxyprogesterone acetate.
Mirena is levonorgestrel, so if you had a bad time on the ClimaraPro it doesn't sound promising. Mind you, check the dosage. The general recommendation for women considering Mirena who are concerned about side-effects and/or want to get some idea of it before they commit to the cost is to try levonorgestrel tablets first. Different route of absorption, different dosage level, but it gives you some idea. If it turns out that the ClimaraPro was, say, four times the dosage level you'd get with Mirena, it might be worth messing around with, but otherwise it doesn't sound a good idea. Mirena provides 21 mcg levonorgestrel per day, and the newer versions (not available commercially yet, alas, though they've been thoroughly trialled, but you can get them if you see Dr Wildermeersch in Belgium) offer 14 mcg, which is substantially lower. I think GynePlant, the copper/levonorgestrel one I was eyeing up, has only 5 mcg levonorgestrel, but that might not be enough to offset the oestrogen.
Aha, I found the daily dosage of ClimaraPro: 0.045mg estradiol and 0.015mg levonorgestrel. I'm brain-dead today and can't work out whether that's 15mcg or 150 mcg. I'd guess that it's 15mcg, in which case it's already a lower dosage than Mirena. Ach, that's easily enough checked.
Your doctor sounds absolutely excellent, and I'm sure he'll be incredibly knowledgeable about anything you ask him about. Don't be put off by the surrogate parenting suggestion, it's reasonable for him to bring up as some people are absolutely determined to have children that are theirs biologically. My cousin is very severely disabled and would be killed by a pregnancy, so she's currently getting into assisted reproduction. I was surprised to hear that they'd even considered using her eggs, as one of her conditions is inheritable. Anyway, they screened the eggs and it was no go, so now she's in the process of setting up using her husband's sperm, an egg donor, and a surrogate. I think I'd have been the same as you and gone for adoption instead as well. Oh well, at least there's no rush for me to finish that baby quilt I'm making for her.
Well, there's no reason not to go ahead and re-try the oral levonorgesterel next time I have to induce a period (December) since I'm going to be suffering anyways. It may be better when not being used along with estrogen (for some reason I find the Provera is better this way too.)
The IUD is expensive, but if it was likely to work I bet my insurance company would much rather pay the $500 for 5 years than the $2,000 every 3 months for my Lupron. ;)
One more question for you - I'm reading Dr. Studd's site - am I correct in thinking that a possible approach to avoid hysterectomy and having to take progestins would be a Mirena IUD and Estrogen patch instead of Lupron and Estrogen patch (or, if I had the Mirena, would I still need something else to shed my uterine lining/protect against uterine hyperplasia??)
Drat, I thought I replied to this last night. Yes, Mirena is used for that purpose. I don't know whether the newer (i.e. not commercially available yet!) hormonal IUDs can be used in that way. It might be worth corresponding with Dr Wildemeersch
about this to see what he thinks. If you want to read up on the IUDs, his site's not the best, you're better off going to the Contrel site, particularly this page
. And aha, I've just clicked on the HRT link in the menu on the left, and there are three whole articles about using these lower-dose hormonal IUDs for endometrial suppression along with oestrogen therapy! Definitely worth looking into, and please do let me know what they tell you. It's such a pity these IUDs aren't available yet, otherwise I'd be getting GynePlant like a shot. Dr Wildemeersh offered to do an insertion for me if I went to his clinic in Belgium, but I'm severely disabled and have enough trouble getting out of the flat to doctors here in Edinburgh, so I'll just have to keep an eye on it and hope it becomes available in the UK by the time my current IUD needs to be replaced. In your shoes, I'd probably try levonorgestrel tablets at the same dose I'd be getting from Mirena, then try Mirena, then if I found it was working but I needed a lower dose, look into travelling to Belgium for the FibroPlant or Femilis Slim.
It would also be worth finding out whether there's any way your specialist could get one of the Belgian IUDs sent to him. I know there was a woman in iud_divas
who needed an IUD only available in Europe (the choice in the US is ridiculous, there are only two), and who got her brother to buy it for her while he was there and send it over so that she could have it inserted in the US. If you went this route, it'd probably need to be the Femilis Slim, as the FibroPlant is a frameless device which requires additional training to insert (one of the main reasons why the GyneFix hasn't caught on as well as hoped). The Femilis, on the other hand, is a more standard T-shaped device, which is inserted in the conventional manner, but has actually been designed so that it's easier to insert. There are two versions: the Femilis, which releases 21 mcg levonorgestrel, and the Femilis Slim, which is a bit smaller and releases 14 mcg.
It sounds like if you continue experimenting with hormonal treatments, there are three variables to look at: specific hormone, method of delivery (Mirena is meant to have a relatively lower side-effect rate because the hormones are delivered locally in the uterus, rather than having to charge around your entire system first, though I should point out that there are still plenty of women who get side-effects on it), and dosage level. See what your doctor thinks can still be done in this area.
2009-07-10 04:54 pm (UTC)
i've had severe endometriosis and PMDD since i was 11 (going on 12 years now. I've have 4 laparoscopies where the endometriosis was surgeically removed and burned off and it always comes back. i've been on lupron on and off for 3 years, but it's not a long term solution- or at least your doctor shouldn't be offering it as one. i'm very sensitive to progesterones as well and only have a limited number of birth control pills i can take without being highly reactive. unfortunately i'm also very reactive to psychotropic drugs so i can't take antidepressants or i go into a suicidal fit (2 visits to shepphard pratt taught us that lesson). i was recently placed on mirena earlier this year- about 4 months ago and have had nothing but problems with it. the physical symptoms are barely tolerable and the emotional ones are worse. i bled heavily (not spotting, but full out menstrual bleeding) about 15 days out of the month with accompanying cramps that could take out a small animal with their severity and i still have constant irritability, rapid mood swings, and just general tearfulness- i cry at anything and everything and it's a very sad heavy hearted cry. i'm going to the womans center at johns hopkins to see a pmdd specialist. mirena will cause you to shed you uterine lining, but for a lot of women this comes with so many adverse side effects and mirena usually causes the development of ovarian cysts as well as severe acne, depression, and general mood instability. i would look into other options before going the mirena route if i were you, especially because like me, you have not had children, and mirena is developed to fit a woman who has had a full term pregnancy and has a slightly larger uterus than a woman who has not- the placement was very painful, required medications that induced hours of contractions, and is still causing problems because it's simply too big for my uterus and there is no way to adjust that. i have also been looking into a hysterectomy which shocks most people as i am only 23, but there is no way i'd be able to handle the high risk pregnancy i would be up for anyway. research is finding that women with pmdd have much higher rates of post-pardem depression and i have a history of still births and miscarriages in my family as well, i dont think i would be able to handle the after effects of the pregnancy, assume i was able to carry the child to term. i would suggest seeking out a pmdd specialist and discussing your options with them before moving onto anything more drastic.,
2009-07-10 04:57 pm (UTC)
I'm actually seeing someone at Johns Hopkins Reproductive Endocrinologist. I'm also 23. I did not go the way of the Mirena but have been on Lupron for two years now. It seems my only hope.
Do you have an email address I could contact you at? It seems we both live in the area and have similar problems.
2009-05-08 03:22 pm (UTC)
you have all the exact same symptoms as I...lived with this for many years and uterine ablation and Effexor helped quite a bit but not 100% seems like I have been running in circles all my life and now am at the pnt to try the Lupron shot...My Mother said I as well had a personality change when starting my menstrual cycle and just got worse over the years..severe anxiety, depression, etc....the only difference was I had two pretty good pregnancies..of course not the first trimester but the 2nd and third were great for me...had a renewed sense of well-being and just felt good. Of course after deliveries had horrible ppdepression and so it goes...I feel the uterine ablation is wearing off and effexor hate taking it if dont have to...blahhhh always have the blahs, nothing makes me happy it seems I feel most days I am just getting by and sick of living my life like this...I would appreciate any input you can give me.
2013-06-23 12:41 am (UTC)
hi i've never written on this site before but what you said striked a chord with me. I have had two pregnancies and almost by magic I felt amazing halfway through both pregnancies. no anxiety, just great. i was even able to take one some very high stress work during that time. i am considering lupron for my pmdd. i'm wondering how you are doing, and what worked/didnt' work for you. i'm taking cipralex but it doesn't really seem to be doing anything for my pmdd (mostly anxiety sx, myalgias, brain fog). the only thing that helped was low dose benzos but that is not a good solution given that i become tolerant and need higher doses.
2010-10-25 06:55 pm (UTC)
request that you contact me
Dear Kristy Victoria,
I can't tell you how much your posting meant to a young woman I know who was suffering much the same as you were -- until she found the reproductive endocrinolgist you mentioned at Hopkins. I have done lots of research about this issue, and wanted to let you know about a few things going on at the NIH. I'm a science writer living in Baltimore and planning to write an article about this topic, and certainly would appreciate the chance to talk to you, if only to thank you for helping someone I love to finally find good treatment after many, many heartbreakingly rough months.
Please contact me at firstname.lastname@example.org
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