Anyone have experience with PMDD??
Raynne413
Posts: 1,527 Member
Ok, after being gone for awhile, I'm back and really need to get back on track. This past year I have started being so exhausted that I can barely get out of bed and go to work, much less work out maintain discipline around food (although I have generally kept at least four days of exercise including cardio, strength, and walking). Thanks to that, and having my doctors messing around with my anti-depressants and anxiety meds, thinking my problem was depression, I am up 30 lbs this year. That alone is enough to make me depressed. According to my gyno, she thinks it is just PMDD. Really?? PMS so bad that I can barely function except for one week out of every month? WTH?? I have never experienced ANY kind of PMS beyond my chest being sensitive, so I don't see how all of a sudden this just pops up. The problem is that it is usually handled with estrogen based birth control, but I can't use that due to blood conditions that cause blood clotting.
If anyone has experience with this, can you offer any kind of advice?
If anyone has experience with this, can you offer any kind of advice?
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Replies
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I ended up in a psych ward because of PMDD. I know everyone's symptoms are different but it can be debilitating.
I was a wreck, self medicating, I had insomnia, compulsive over eater got to 250+ pounds at 5"4.
Relief for me only came when as a result of having a cyst on my ovary I had to have a laproscope and the discovered stage 4 endometriosis as a result of the surgery to then remove that I am on Visanne. I know very little regarding the make up of pills but Visanne is a progesterone pill.
Which means I have no cycle and as a result no symptoms.
My advice is to get it under control using medication that will not cause blood clotting. You will feel so much better. It quite literally changed my view on the world.2 -
MeganMoroz89 wrote: »Have your doctors tested both your iron and ferritin levels? I'm definitely not saying, "this is it!" but when I didn't have my iron overload under control the amount of fatigue I felt was sometimes overwhelming. If it wasn't a work day I would sleep in until 2:30 at least if no one were to wake me up. I constantly felt cloudy-headed and it was hard to concentrate. My anxiety also spiked (while there haven't been studies on anxiety and iron overload and how they're connected, I've spoken to many ppl with my issue who have experienced increased anxiety symptoms (which are often similar to depression) during times of high iron overload).
My doctors have to stay on my iron because I can get severely anemic. I've actually had to have iron infusions. Oddly enough, though, my iron is perfectly normal at this point. I wish it wasn't, so I'd have an easy answer. LOL0 -
Sheks41191 wrote: »I ended up in a psych ward because of PMDD. I know everyone's symptoms are different but it can be debilitating.
I was a wreck, self medicating, I had insomnia, compulsive over eater got to 250+ pounds at 5"4.
Relief for me only came when as a result of having a cyst on my ovary I had to have a laproscope and the discovered stage 4 endometriosis as a result of the surgery to then remove that I am on Visanne. I know very little regarding the make up of pills but Visanne is a progesterone pill.
Which means I have no cycle and as a result no symptoms.
My advice is to get it under control using medication that will not cause blood clotting. You will feel so much better. It quite literally changed my view on the world.
This is exactly me!!! I just had my Mirena removed because I was hoping that it was causing my problems. Progesterone I can take, just not estrogen, so I may look into that. All I want to do at this point is eat and sleep. I'm highly irritable, and can barely concentrate or remember anything. I'm even forgetting my coworkers names. I used to weight over 300 lbs, and lost down to around 145 and maintained for over three years, so putting back on 30 lbs is devastating to me.0 -
@Raynne413 I really think chat to a doc about going onto something that you can take with your blood conditions.
I feel so strongly about this having gone through it myself. I identify with everything you said. The sooner you get onto something for it the quicker your eating will even out as well.1 -
Sheks41191 wrote: »@Raynne413 I really think chat to a doc about going onto something that you can take with your blood conditions.
I feel so strongly about this having gone through it myself. I identify with everything you said. The sooner you get onto something for it the quicker your eating will even out as well.
Thank you! I feel like I'm going crazy, and then for my gyno to just say, oh, it's just a bad form of PMS. It's like, that doesn't even begin to encompass how horrid I feel. I wasn't wanting to do hormonal birth control, because of it's association with cancer, but at this point, I don't even care.0 -
PMDD is horrid. It's not just 'bad PMS'... it's several levels above that, the level where you have to fight the boss. Don't dismiss the diagnosis. It's not 'just pms'...It's much, much more. If you feel like death for the week before and up to a week after your period and not quite normal in between, then it is PMDD. PMDD is like fighting a brick wall.Ok, after being gone for awhile, I'm back and really need to get back on track. This past year I have started being so exhausted that I can barely get out of bed and go to work, much less work out maintain discipline around food (although I have generally kept at least four days of exercise including cardio, strength, and walking). Thanks to that, and having my doctors messing around with my anti-depressants and anxiety meds, thinking my problem was depression, I am up 30 lbs this year. That alone is enough to make me depressed. According to my gyno, she thinks it is just PMDD. Really?? PMS so bad that I can barely function except for one week out of every month? WTH?? I have never experienced ANY kind of PMS beyond my chest being sensitive, so I don't see how all of a sudden this just pops up. The problem is that it is usually handled with estrogen based birth control, but I can't use that due to blood conditions that cause blood clotting.
If anyone has experience with this, can you offer any kind of advice?
I am on hormonal BC and it manages the PMDD...it's downgraded to a 'bad pms' at times, and others it is very manageable.
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Well, the "just PMS" was the dr's initial wording. After experiencing this, I would never dismiss it again. Basically the only time I feel half way normal is the week after my period and the last few days of it. It's crazy and horrid and I'm miserable.
Is your hormonal BC both estrogen and progesterone or progesterone only?0 -
Okay I saw that you had Mirena. I'll tell you straight up...
I went from having episodic, grief-induced depression to a diagnosis of agoraphobia with possible borderline personality disorder during the ~year I had my Mirena in.
Before that, I started the pill. Yaz. I was already taking antidepressants and was doing okay, but on Yaz, I started getting very aggressive and lost my sex drive, so I went off of it. It was soon after that that I started losing weight. I lost about 50lbs, and started bleeding, and kept bleeding for 5 weeks... Finally go to the doctor, and ended up having a laproscopic removal of an 11cm dermoid cyst that had all sorts of stuff in it, and a uterine biopsy. Three months later, inserted Mirena.
Within a couple months, I was on 2 new psych meds. Insomnia, irritability, but no periods so hey, woohoo, right? I had ovarian cysts CONSTANTLY. Pelvic Inflammatory Disease possibility, multiple ER trips... I lost my job after only a few months having it in because I started going completely off my rocker, essentially. Serious, serious depression. Major anxiety attacks. Agoraphobic tendencies, substance abuse as escapism, and all of my doctors considered the "inefficacy" of my medications to be a deterioration of my mental health, so I had more meds. I was on a mood stabilizer, 2 doses of antipsychotics, an antidepressant, an anxiety maintenance medication, a sleeping pill and emergency xanax. Yet, I still had a suicide attempt episode and ended up in hospital.
Not even a month after that, I was back in ER and was so sick they did a CT and found out my entire belly was infected... the next 4-5 months of my life nearly killed me with infection and stuff, and I continued to have cysts and psychological problems.
No joke though, I had surgery in 2013 and it removed one of my ovaries, a tube, had to resect scar tissue that was caused by all of the cysts and things, and they took out the Mirena.
Two weeks after surgery, I was completely off all of my psych medications, and have not been on any since (except for recent anxiety treatment due to life event, but was short term, and dental sedation). They literally were about ready to label me with a personality disorder that would have limited my ability to do several things in life...
So what was once BPD with agoraphobia is now occasional acute anxiety most likely related to autistic spectrum... and my worst depression-esque symptoms? The first thing we check now is whether I have a cyst. Recently, with my anxiety problems, I thought maybe I'd finally hit a "down swing" but I also stopped cycling so they did an ultrasound. Sure enough, 3 ovarian cysts just hanging out on my solo ovary.
Anyway, sorry about the long response but, Mirena is ridiculous. In every other country, they advise against giving it to women with any history of psychological issues because it has been documented in several cases to cause worsening depression and suicidal ideation. It wasn't until I switched doctors that I was able to have someone take it out for me. I felt so amazingly better. Some days I think there must be a catch... I really wanted to love it but it was really rough.
Just the other day, my doctor and I talked about my weaning off the temp anxiety med and he mentioned going on Zoloft or something for the anxiety and I said I wanted to wait. And he looked at me and said you know, You are doing so much better now than you were when you were on all of those meds, I'm glad you want to wait. I said, I don't want to treat hormone issues with psych meds... and I sure don't want to treat the side effects of psych meds, with more psych meds... because that's how I ended up where I was before, and I'm clearly not mentally ill.0 -
I should state that it took maybe 2-3 months of having the Mirena out of my babymaker before I felt completely normal but I was able to stop my medications almost immediately simply because I didn't feel withdrawal.. I kept forgetting! Weight loss has caused me a lot of hormone changes and is the primary cause of my PCOS type issues, not the resolution of them, and it's pretty frustrating... But I allowed them to give me a different birth control pill recently.
If you can have progesterone but not estrogen, maybe you should consider something like the Depo shot... because even though it can cause some bloatage and things, it limits the cycling to 4 times a year or less. Progesterone rings too could work.1 -
Your symptoms sound like low progesterone.
Doctors irritate me. If your progesterone is not at least 75% of the lab range you are not going to feel well. I really hope you can find a doctor that knows what they are doing to help you because that just sounds miserable. 
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Perhaps the doctor was...easing you into it? I don't know. All I know is PMDD is horrid...Well, the "just PMS" was the dr's initial wording. After experiencing this, I would never dismiss it again. Basically the only time I feel half way normal is the week after my period and the last few days of it. It's crazy and horrid and I'm miserable.
Is your hormonal BC both estrogen and progesterone or progesterone only?
I'm on Yasmin, so it has both progesterone and estrogen. I still have my moments, especially if I am already very stressed.
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Did they tell you why they now think it is PMDD? Are they basing this off of some specific tests or because they haven't found anything better? Seems odd to me that you would go from almost no PMS symptoms to such a severe form of them.
What types of doctors have you seen so far? Gyno and ? I get the really strong feeling that they are missing something, and that if you saw the right specialist you might get some answers that actually make sense.0 -
I should state that it took maybe 2-3 months of having the Mirena out of my babymaker before I felt completely normal but I was able to stop my medications almost immediately simply because I didn't feel withdrawal.. I kept forgetting! Weight loss has caused me a lot of hormone changes and is the primary cause of my PCOS type issues, not the resolution of them, and it's pretty frustrating... But I allowed them to give me a different birth control pill recently.
If you can have progesterone but not estrogen, maybe you should consider something like the Depo shot... because even though it can cause some bloatage and things, it limits the cycling to 4 times a year or less. Progesterone rings too could work.
Thanks so much for your reply! I've only had my Mirena out for a few weeks, so I suppose there is still hope. The odd thing is that the Mirena I had removed is actually my THIRD one, and I didn't have problems with the other two. But I am so desperate now that I asked them to remove just to see if it would help.0 -
teetertatertango wrote: »Did they tell you why they now think it is PMDD? Are they basing this off of some specific tests or because they haven't found anything better? Seems odd to me that you would go from almost no PMS symptoms to such a severe form of them.
What types of doctors have you seen so far? Gyno and ? I get the really strong feeling that they are missing something, and that if you saw the right specialist you might get some answers that actually make sense.
She based it only on the description of my symptoms. I have also seen a gastro doctor because I have issues absorbing iron, and he did a full colonoscopy and endoscopy and everything appeared normal. I was tested for a genetic mutation that can cause a lot of my symptoms, MTHFR, and that was negative. My iron levels are normal. And I saw an endocrinologist to check my thyroid and that is in the normal range.0 -
ronjsteele1 wrote: »Your symptoms sound like low progesterone. Doctors irritate me. If your progesterone is not at least 75% of the lab range you are not going to feel well. I really hope you can find a doctor that knows what they are doing to help you because that just sounds miserable.
Thanks! I may ask about that because I don't think they checked my progesterone levels or estrogen. Only thyroid and testosterone (history of PCOS).
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This may sound harsh, but I really don't intend it to be, so I am sorry if it comes across that way.
I took a look back in your posting history, and with quite a bit of what you posted, I really think you should go back to your doctors and let them sort this out (not rely on Internet posts).
A while back you said you had PCOS, did they ever treat for that? http://community.myfitnesspal.com/en/discussion/comment/37550150/#Comment_37550150
You also mentioned a pretty significant eating disorder history with binge and restrict cycles. That also could have played havoc on your body; which you even admit.3 -
PMDD made my life a living hell for a lot of years. At least you have a doctor who believes it is a real thing. Many people don't get that kind of support. I had to work it out on my own. Now I am nearly through menopause life is a lot better.
Calling it Just PMS is kind of like calling a disabling migraine, just a headache.
You will need help from our doctor to sort out the hormone imbalance that causes PMDD. This isn't something you want to try to just live with.1 -
shadowfax_c11 wrote: »PMDD made my life a living hell for a lot of years. At least you have a doctor who believes it is a real thing. Many people don't get that kind of support. I had to work it out on my own. Now I am nearly through menopause life is a lot better.
Calling it Just PMS is kind of like calling a disabling migraine, just a headache.
You will need help from our doctor to sort out the hormone imbalance that causes PMDD. This isn't something you want to try to just live with.
This. SO much this.
I agree. Don't try and live with this... It won't work.1 -
Check vitamin D levels. Check magnesium levels. Heck, have them check ALL YOUR LEVELS OF EVERYTHING. Get an MRI. One doctor tried to send me to a psychiatrist because I seemed depressed... well turns out I had EXTREMELY low iron & hemoglobin levels, a vitamin D deficiency, fibroids, adenomyosis (similar to endometriosis) and heavy bleeding & pain all the time. Can you guess why I seemed depressed?!!
Post hysterectomy now and back to feeling great and healthy thank goodness- but it still pisses me off how that doctor tried to treat a physical problem as a mental one. Change doctors if you feel your needs are not being met until you find someone who can actually help you.3 -
This may sound harsh, but I really don't intend it to be, so I am sorry if it comes across that way.
I took a look back in your posting history, and with quite a bit of what you posted, I really think you should go back to your doctors and let them sort this out (not rely on Internet posts).
A while back you said you had PCOS, did they ever treat for that? http://community.myfitnesspal.com/en/discussion/comment/37550150/#Comment_37550150
You also mentioned a pretty significant eating disorder history with binge and restrict cycles. That also could have played havoc on your body; which you even admit.
I've had treatment for PCOS for years now, probably around 14? So that should be covered, hopefully.
I am talking to my doctors. The only conclusion that has been drawn was my doctor saying PMDD. That's why I was asking. I don't necessarily want a diagnosis for the internet forums, I just want to hear other people's experiences with it, and if they had any luck in treatment.
Luckily, I have been free of the binge/restrict cycles for awhile. Especially the restricting LOL, which is why I now have 30 lbs to lose again. I'm sure it has affected my metabolism though.
Thank you for taking the time to reply!0 -
courtneyfabulous wrote: »Check vitamin D levels. Check magnesium levels. Heck, have them check ALL YOUR LEVELS OF EVERYTHING. Get an MRI. One doctor tried to send me to a psychiatrist because I seemed depressed... well turns out I had EXTREMELY low iron & hemoglobin levels, a vitamin D deficiency, fibroids, adenomyosis (similar to endometriosis) and heavy bleeding & pain all the time. Can you guess why I seemed depressed?!!
Post hysterectomy now and back to feeling great and healthy thank goodness- but it still pisses me off how that doctor tried to treat a physical problem as a mental one. Change doctors if you feel your needs are not being met until you find someone who can actually help you.
Thanks! I'm glad to hear you are feeling well again. Actually, magnesium was one of the supplements recommended to help with PMDD symptoms, so I am trying that now.0 -
Along my regular anxiety, I get horrible, life changing pmdd. I only finally went to the dr for help back in August. I'm now on Effexor and buspar and have never felt more stable and better.1
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@Raynne413
This is exactly me!!! I just had my Mirena removed because I was hoping that it was causing my problems. Progesterone I can take, just not estrogen, so I may look into that. All I want to do at this point is eat and sleep. I'm highly irritable, and can barely concentrate or remember anything. I'm even forgetting my coworkers names. I used to weight over 300 lbs, and lost down to around 145 and maintained for over three years, so putting back on 30 lbs is devastating to me.
~This very closely speaks to what is going on with me right now. I'm so beyond annoyed that I feel tired and like crap 24/7 that I just would rather stay home and not be around anyone. I feel bad for my doctors cause I just want to scream at them for not being able to give me a "simple answer". Just so very annoying. Hopefully your finding something that is helping you 0 -
For me, going onto Depo has made my PMDD so much easier. Once every 12 weeks it starts to kick in again - about five or six days before I get my next shot. I do find my appetite goes sky-high just after getting my shot though...
It's not for everyone, but it helped me. Different things for different people, but there are options out there - your doctor needs to kick into gear and help you find out which one works for you!0 -
Not sure if I have PMDD or not but PMS has gotten worse for me as I approach menopause. I have a history of dysthymia (depression) & anxiety. Gyno prescribed low dosage of Zoloft & I feel so much better!0
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It's threads like this that sure make me glad I'm a guy ..
Good luck everyone .. I mean it I feel for ya
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alexsuffell wrote: »For me, going onto Depo has made my PMDD so much easier. Once every 12 weeks it starts to kick in again - about five or six days before I get my next shot. I do find my appetite goes sky-high just after getting my shot though...
It's not for everyone, but it helped me. Different things for different people, but there are options out there - your doctor needs to kick into gear and help you find out which one works for you!
My dr doesn't want me to do the depo shot, and I just had my Mirena taken out (AND feel noticeably better), and my hematologist doesn't me to do an IUD. So that leaves me with the mini-pill or basically condoms. After reading the side effects of the mini-pill (increased depression, weight gain, cancer, etc., it makes me hesitate to give it a try). Ugh! Being a woman sucks. LOL0 -
Not sure if I have PMDD or not but PMS has gotten worse for me as I approach menopause. I have a history of dysthymia (depression) & anxiety. Gyno prescribed low dosage of Zoloft & I feel so much better!
Anti-depressants definitely can be a big help! I'm glad you found something on the first try! After months of changing pills and regulating dosages, I've finally settled on Cymbalta and Wellbutrin. At this point, even though Cymbalta can cause weight gain, I'd rather not be able to lose and to actually FEEL normal!1 -
red99ryder wrote: »It's threads like this that sure make me glad I'm a guy ..
Good luck everyone .. I mean it I feel for ya
Yeah, yeah, rub it in! LOL0 -
This! After much ho humming I had a Vaginal hysterectomy and quality of life came back. Feeling like I was hit by a mack truck was my "normal". My iron was a 9. Turns out I had fibroids and a severe case of adenomyosis (tissue that grows into the muscle of the uterus) and my uterus was 3xs normal size. Life is good now! It's the most extreme option but my god it is the Best decision I have ever made for myself!courtneyfabulous wrote: »Check vitamin D levels. Check magnesium levels. Heck, have them check ALL YOUR LEVELS OF EVERYTHING. Get an MRI. One doctor tried to send me to a psychiatrist because I seemed depressed... well turns out I had EXTREMELY low iron & hemoglobin levels, a vitamin D deficiency, fibroids, adenomyosis (similar to endometriosis) and heavy bleeding & pain all the time. Can you guess why I seemed depressed?!!
Post hysterectomy now and back to feeling great and healthy thank goodness- but it still pisses me off how that doctor tried to treat a physical problem as a mental one. Change doctors if you feel your needs are not being met until you find someone who can actually help you.
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