PMDDs Impact on Life

PMDD held more sway over my life than I care to truly think about.

It wasn’t alone of course. With it was PTSD and OCD, depression and anxiety. Undiagnosed autism and ADHD. But PMDD was an unknown trigger for a great many of my struggles, I think even before my period actually started. Hormone fluctuations do start before the actual cycle starts you know and I think I was always sensitive to them.

So what kind of impacts did PMDD have on me? Well, I’ve always been a bit more awkward and impulsive, but hindsight is 20/20 and I can see a great many of my more tumultuous and impulsive acts started about the time I lost control due to hormones after my period started.

I was never comfortable in my skin and adding bleeding every month and insecurities it brought did not make it any better. The weight gain, the acne, oily skin, and just feeling ugly overall. I never felt or even wanted to be a woman. I didn’t want to be a man either. I wanted to be me and just me. So I hated I had to go through this process of “being a woman” when it was not something I felt remotely connected to. I did not want children. I did not want periods. I did not want any of it so it just felt like this was just there to make me suffer. I felt gross, dirty, and diseased. What I didn’t understand that this was my gender identity and anxiety around my self identity being brutalized by my own mind and body. All in all it really messed up my head and how I see myself. But I talked about this in my previous post.

This leads to my mental/emotional health. I have struggled from before I knew I had hormones. When menstruation started though I had such a sense of loss of control, loss of knowing what and who I wanted to be, I felt like I was in a pinball machine. The flippers beating me around and around banging into everything but always being dragged back by the gravity to a dark well, just to be shot out again month after month. I missed more and more school, I was suck more often and had horrible migraines and chronic headaches. I felt lost and alone and wrong. How could it be this damn hard and people around me still happy and able to cope! What was I doing wrong? Why was I such an alien to this world.

When you have mental health issues and are developmentally different anyways hormones can mess it all up more than most. When I was feeling my most well was at the days before ovulation. After that I always missed work, I always had migraines, I was always more irritable and anxious, I was always more sensory avoidant, I was always more prone to panic attacks and fearful obsessions. Always. Living in a cyclical state of despair and pain does something to one’s brain and soul. It scars it repeatedly, over and over. And that doesn’t take into account the constant self berating, harm, and should statements that circle around and around and leave lash marks all over our psyche.

PMDD/PME cost me and my family alot. In trauma. In grief. In health. In money. In stability. In relationships. In love. In every aspect of our lives.

I’m still angry. I’m angry because doctors didn’t listen. I’m angry because we all suffered needlessly. I’m angry that I didn’t have a name for it much earlier. I’m angry that my children are scared of puberty because of what their mother went through.

I’m sad at the career I lost. Dreams I’ve had to give up. Opportunities that I missed. The joy of my young children. I miss the relationship my husband and I once had.

I miss my self confidence. I miss my self esteem. I miss control. I miss emotions that don’t feel like tidal waves. I miss being happy and not being afraid that me being happy meant something was wrong.

What did untreated PMDD/PME cost me? School. Friendships. Family. Physical health. Mental health. Sexual health. Career. Confidence. Self esteem. Self love.

I learned something though from my battle. I learned to fight. I learned to not surrender. I learned just what I was made of and that I can get through it tooth and claw. I will pass these lessons on to my kids and to who ever I can reach.

Thankfully, PMDD is not life long and we just have to fight long enough to be free of it. It’s going to hurt. It’s going to leave scars. But keep fighting it. It’s worth it.

Hormones play a huge role in mental health, one we don’t understand much and one that there is not enough significant research into. Yet. The players are changing so I hope that changes too.

Why we choose to die

Why we choose to die

No, I’m not going to hurt myself so no one panic, I am writing from experience and that is all. Most people don’t know why or can’t understand why a person would choose to die (suicide). Obviously I’m not speaking for everyone, I’m am speaking for myself and I know I’m not alone in my sentiments on this topic.

The vast majority of people will have blips in their thoughts like “oh, I wish I didn’t exist.” Or “I can’t take this, I wish I was dead.” Maybe even “What would happen if I just drove my car off this bridge.” These are normal thoughts, normal for anyone facing stress and troubles that are hard and maybe feeling lost and alone. I’m not downplaying these thoughts, and if they make you uncomfortable you should definitely be talking about whatever is causing these thoughts, but in our society? They are normal.

Suicidal ideation may go beyond these thoughts, may even consume your thoughts for more than a few seconds. And it may really feel like you just want to end it and sometimes you may not even know why. These thoughts often scare us. They scare us more because we think it means we actually do want to die. Being suicidal and suffering suicidal ideation are very different though. Neither are normal, but one is suffering from thoughts and the other is being in a state where dying is sought out. One is not suffering from the thoughts. Take a moment think really think about that.

When I feel suicidal, my suffering is not caused from thoughts of dying. My suffering is caused from the thoughts of continuing to live. To live is to suffer. Pain. Loneliness. Shame. Guilt. Horror. Despair. Fear. This is living. Words and deeds leave invisible scars that fester, rot, and consume all that is healthy and light. And then I watch this fester seep into those I love, those I cherish and it hurts 100 times more than if it was just myself. I am poison. I am dooming everyone around me and I have to save them from my disease. Sometimes this just becomes my ideation, sure. Other times it forms into a desire, a plan, a hope. Regardless of what death is, it is an end to this suffering, this blight.

Most of my thoughts now are chronic ideation. No plans. At times I wish I could plan. At times I truly just want to leave this world and it would be so easy to do so. So much easier than facing every single day and night. I am not cut out for this world, this society. I scar way too easily. I go on, I wake up each day, because I’m not selfish. I wake up for my kids. I seek out care to do my best. But you can’t blame me for not being too upset if death comes knocking, as much as I fear that unknown, death and I go way back. I feel guilty for even thinking this way, so for those who died by suicide, there is no doubt in my mind that their choice (most not all) was not about any selfish thought.

Most people cannot fathom the anguish of which our minds can experience. It is akin to nothing else in this world. It lies, it poisons, it rots, it severs, it bleeds, it boils, it burns, and it terrifies. It doesn’t like to rest though. And as the scars build more and more layers, the pain can’t escape and it can’t be reached to be assuaged.

I know some who are reading this may not experience these thoughts but rather are seeking to try to help a loved one. And you may be exhausted and scared. I know, I’m sorry. We don’t want to be this way. We don’t want to dream of death. We know that it’s asking alot to listen and help us, it’s asking alot of us to continue living too. Try to remember that. If one day we do choose, we aren’t trying to hurt you. We just grew too exhausted from the battle fatigue to stand up and fight.

I don’t regret my attempt. Not any more. It gave me so much more than it took. To anyone making plans or wanting to die, I’ll listen. I can’t fix your life or your thoughts. I will fight beside you though.

The human condition

Going on 3 years post op I’m still hostage to hormone fluctuations but it’s not all bad! Feeling well is not a destination. I’m never going to feel well every day, that is a myth and legend and just unattainable. This no longer really upsets me though.

I think we have been sold a bill of goods that is for things that just don’t exist. Now do I think that means we can’t feel well? Or happy? Healthy? No, not at all. It means that we shouldn’t expect it to be a constant. Considering all that we must face in our day to day lives, all the stress, all the agony, all the choices and decisions we have to make every day feeling well is always going to be at the mercy of it all.

So why do we keep pushing ourselves and telling ourselves we are failing if we are not happy and feel like we can take on the world every day? Because the media and so many people tell us that’s what we need to strive for. They are wrong. If you are pushing and pushing yourself to feel happy and well, do you think that you actually will? I know I don’t. It makes me stress more. It’s unattainable. It’s a lie. Yes they are lying to you.

Should you stop doing what you can to feel well or happy? Of course not, but you shouldn’t destroy yourself or your self esteem to try to get to a destination that doesn’t exist. When I ease up on myself, my mental well being and my overall happiness is actually satisfying. I hurt physically and some days I’m just plain miserable, but all in all, I’m satisfied where I am and that brings me the most peace of mind.

I’m not trying to get to happy, I’m trying to enjoy happy when it exists in my life. I’m trying to find the joy and spark on the days I have the energy and ability. And I’m telling myself on the days I don’t that it’s alright.

I’m forgiving myself for being human, flawed, and ill because it’s simply the human condition.

I’m not going to stop the things that may help me, I’m just not going to feel a failure when they don’t always work. I didn’t fail.

2 Years Post Menstrual Psychosis

April 26, 2016 I had my first Lupron injection to stop my menstrual cycles and chemically castrate me. April 26, 2016 was the beginning of my life again. I cannot tell you just how my life has changed since then. It is night and day. Life is not all peaches and cream, of course not, it’s still life. I still struggle with mental health, I still get triggered, my hormones still fluctuate. However, for the first time since 2011 I have control over my life. Since then I have learned so much about menstrual related syndromes such as PMDD and menstrual psychosis. I have learned just how much hormones truly impact our bodies, minds, and emotions. I have learned that Reproductive Rights are so much more than abortion. I have learned that as a society those struggling with MRS (menstrual related syndromes) are belittled, ignored, and invalidated. And the shame that this so much worse for my AFAB colleagues. I don’t know how to be the activist that we need. I am not giving up. Even if every one brands me as someone to ignore, I will work till my last breath to keep bringing my message to everyone. I will force it down medical professionals throats, down insurance companies, down government agencies. I will, because I can. Because I have a voice and I refuse to be ignored or stand down. This is a warm and you can rest assured that I am the soldier you want fighting in the front lines. I will not go quietly into the night until I know that we are finally being listened to, our concerns validated, and our rights established.

TMS Day 4 – Freakin Hormones

I know, I know its Sunday. Where is my post about Friday? Well, Wednesday I did not replace my estradiol patch. Unfortunately the effects are not immediate. I started having issues on Friday and Saturday was horrid. Today I’m writing up Day 4 my TMS.

It was a pretty decent day to begin with, I had a cold and felt a little cruddy from the hormones, but it was all manageable at that point. I got to meet a friend for lunch, which we try to do once a week. Going into my appointment I was pretty positive. The Tech I had from Wednesday was there on Friday. She’s another really nice person, easy to work with and talk to. She was so happy there was sun because that meant she could mow her lawn this weekend and defeat her weeds. I commented about growing up in Arkansas and how I hate mowing lawns! Haha! Plus I have a black thumb anyways. I got set up easily, takes only a minute or two now, got my Supernatural going on the iPad, while she was getting the coil set up on the right side. No sensitivity! We started at 105% and moved up to 110% on the right side by the end of the session so I’m at full strength on the right side now which they were impressed with that I was able to get there so quickly.

We also discussed if I was noticing any improvement in my mood and anxiety. I could notice a difference in the first few hours but felt cautious in thinking it was real. Like maybe it was just that I felt hopeful. She reassured me that it could be real, even this early, but that we couldn’t really tell until we were at full strength for a couple weeks.

Before I knew it it was time to switch to the left side. A little sensitivity but not too much. No real pain. My head was hurting but I had a cold and my hormones we’re a mess. The left side we also got to 110% on Friday. I’m scheduled to get up to 120% on Monday.

I left Friday feeling better, more clear headed, my mind was not racing from worry to worry, anxiety to anxiety. I felt like I was breathing. After that I got a 90 minute massage, which cemented in that feeling for the rest of the evening.

I knew that Saturday I would wake up, my hormonal fluctuations would be at their worst, my mood would bounce all over the place and my anxiety would sky rocket and my mind would cloud over. I knew though that there was hope. That even if the TMS did not fully work, did not stay with me for long, that my life could change with enough work on my part and of those in my support system. I’m not talking about perfect, I’m not talking about “normal”, I’m talking about being functional, not living in fear every day, and maybe, just maybe a little happy on most days.

Those who are reading my story, thank you. You mean so much to me!

PMDD, Finally

Over the course of the next few months I have moments of peace and clarity, and then depression, and then rage and irritability, and depression again and then peace and clarity. I have matched it to the fluctuations in my hormones. Sometimes I was very scared that I was wrong, that I was truly bipolar, but whenever my period hits and flood of relief comes the day after I knew I was not. After awhile I am convinced it is PMDD. I have discussed it with some my doctors before and they agreed that I had PMDD but that it was only treatable with the psych meds I was already on and birth control. I read and read and read some more. I didn’t know PMDD could be this extreme. My symptoms lasted for upwards of three weeks at times. I wasn’t just depressed and full of rage or irritability, I was actually psychotic at times. How could hormones be this bad? I didn’t know until after all my reading that PMDD is commonly mistaken for bipolar. I didn’t know that there were other treatments for PMDD if everything else had failed. Including the sought after total hysterectomy I had previously asked my psychiatrist for. I had hope again. If other women had gone through this exact thing and found help, so could I.

My family backed me up 100%. They even did their own research. Anything to save me, to keep me going. I called numerous doctor offices, I even saw a reproductive endocrinologist, to no avail. After that for a couple weeks I was depressed. But I gathered my strength and charged forward. I knew I wanted a hysterectomy. In the meanwhile I had heard of Lupron. A drug that causes chemical castration (menopause). It had been used to prove that a total hysterectomy would “cure” pmdd. Of course I would be dealing with surgical menopause but anything, anything(!) was better than this monster in my head (or ovaries). I looked back at all my history and found that yes I was intolerant to progesterone. I found after taking the phytoestrogen, that while during my ovulation phase, taking additional estrogen caused depression (estrogen dominance) so I would have to back off my supplement during this time. I was super sensitive to hormone fluctuations!

My husband was still in Washington state for his contract work. I wasn’t having luck finding doctors near me who treated PMDD so exasperated I called a doctor that was near where my husband was living at the time. He knew what PMDD was and he had treated PMDD before. I didn’t bother to ask how he had treated it, I just booked an appointment. It meant me leaving my kids with my parents for an indefinite period of time. I could be back in a week, it could be a month. I didn’t know. They were very encouraging, both my kids and my parents. I needed to get better, I needed to take care of me before I could truly take care of them. I needed to be whole again. Putting myself first was mandatory at this point. So off to Washington I went.

On April 5th, 2016 I saw my doctor for the first time. The nurse who did the intake didn’t know what PMDD was until I broke apart the acronym, which made me nervous. She didn’t know why I would want to try Lupron, Lupron is only for cancer patients. This made me even more nervous. We waited, I kept staring at my husband, and he at me. We are putting so much faith in this and hoping and praying we are not wrong.

It wasn’t a long wait, maybe five minutes. The doctor came in, I felt immediately that he had a very strong personality, very cocky and sure of himself, someone who was very intelligent. I also noticed a warmth and humor radiated from him. I was still nervous as hell. I have been around many charismatic doctors.

I went into this visit armed to the teeth. I went in with lists of all the medications I had been subjected to in the last five years. All the antidepressants, antianxiety, antipsychotics, anticonvulsants, birth control, sleep meds. I wrote my entire history of my menstrual cycles, their changes, my history of PCOS and its symptoms, my experiences after both births. I talked about my reaction to a simple estrogen supplement, the changes it wrought in me in just days.

So after the pleasantries and the doctor asked me what he could do for me, something like this came out of my mouth.

“I have pmdd, premenstrual dysphoric disorder. I was misdiagnosed bipolar II with rapid cycling and treatment resistant for a long time. I recently tried an estrogen herbal supplement that changed my life and came off all my psych meds. It worked but I still have very serious issues. So this is what I want, I want to go on Lupron, induce chemical menopause, for three months, so YOU will feel comfortable in authorizing me to have a full hysterectomy and oophorectomy.”

I was not prepared for his response. He didn’t disagree with me. I don’t remember his exact words (my short term memory is not good) but it blew me away. The rest of the time I was in there talking to him with my husband we talked about how hormones work, about hormone replacement therapy, and how Lupron would actually work on my ovaries. He looked at my medication lists, asked me how I reacted to birth control, and said that I was very educated. I knew what I actually wanted and I understood what the risks were and he would be happy to start the treatment I was requesting. He made some off colored jokes about my husband staying with me through my insanity and all but I didn’t care. He took me seriously! So we discussed timing for the injection, what to expect, and how to start the process. This would be the first of several wonderful conversations with this doctor. I do remember him saying something about this being his first time treating PMDD like this and it would be a cool little experiment. I didn’t care. I was delirious with relief. Most of my information was taken directly from a Dr. John Studd of worldly renown in treatment and therapy of PMDD, so while I was anxious and worried I had some hope.

Getting the Lupron proved to be more difficult but the doctors office staff were miracle workers. That is all I can say on that.

I got through the rest of April with my current normal of depression, weepiness, emotionality, rage and irritability, and more despair and panic. The doctor said it was best to do the Lupron injection day 3-5 of your period. I had hope. It got me through. I struggled with being away from my kids. I struggled with what to do right after the injection. I had heard plenty of horror stories of how hard menopause can be and I didn’t know what my reaction to the Lupron itself would be. A couple days before the shot I confessed to my mom that my anxiety levels would be better if I just stayed for the duration of the first injection. Another month. Now I was going to be gone from my kids for two whole months. This is especially hard because I homeschool my kids, I was around my kids 24/7 and I loved being around my kids. Yes they were difficult at times and sometimes I really needed a break from being with them and I got those breaks. But I never went any amount of time like this away from them. It was hard on me, it was hard on them, it was hard on my parents.

April 26th arrived, the day of my injection. It was just a nurse visit. I fidgeted a lot in the waiting room. All the doubts and fears had surfaced, even though I was supposed to be calm since my period had started. Those doubts and fears are normal in every person regardless of what they suffer from. I was terrified I would be proven wrong, that I was psychotic and that I was untreatable.

I was called back by the nurse. They weighed me and took my blood pressure. She was talking to me about PMDD and kids. She was very sweet and kind. The Lupron is a powder that they mix into liquid to be injected. It is always injected at the hip. It didn’t hurt. It didn’t even sting. I didn’t bleed at all, she couldn’t even find where to put the band aid. She wished me well, I went up to the front and made my next appointment for thirty days. May 24th. Here we go!

Freedom to choose

I am now nearly 3 weeks post op for a total hysterectomy and bilateral salpingo oophorectomy. The recovery process has been slow, which is fine, and willing to continue to take it slow.

I am very happy to report that my HRT (hormone replacement therapy), which is estradiol .1mg/day patch twice a week, is keeping all symptoms of menopause at bay. No side effects either mental, emotional, or physical. Because I am so young I know that I will be on HRT for quite some time and it will take some work to ensure that my levels are optimal through the rest of my life. I will happily add testosterone into my regime once my levels are stable and if I feel like it will help keep my energy levels up. I want to be active now, so I need to ensure that my hormones are able to keep up with me. I never want to go back to the way I was before.

I cannot express how thankful I am for this chance at life again. For finding a doctor that would listen compassionately to me, listen to my story, and agree to try experimenting with me. I never felt comfortable with my previous diagnosis of Bipolar. It never sat well with me, because it did not fit me. I have been in many support groups, hospital programs, and groups and I just did not fit in. I want to champion mental health issues, there is way too much stigma attached to them, however I want to ensure that the root cause identified and treated correctly. I do not want to minimize a bipolar diagnosis. Seeing as my symptoms were classified as such being bipolar would be terrible and a fight I cannot honestly answer if I would have been able to hold out against for the rest of my life.
I also want the medical community to stop shaming women for asking for such treatments as I underwent and hormone replacement therapy. Doctors are so worried about law suits and side effects of hormone replacement therapy they are willing to place women on multiple anti-depressants and mood stabilizers and anti-anxiety medications that can easily cause just as dangerous side effects as HRT.
Medical professionals use menopause to scare women away from the same treatment that cured me and allowed me to live. Menopause affects every woman who has normal reproductive system. They hold it out there like it is worse than the PMDD that we are suffering from and will kill us. This is simply not true. No menopause is not a cake walk and for some women it can surely be hell for a while, but there is much more support for women who are under going menopause, many more treatment options, and it (in majority of cases) has a finite end. However, women with PMDD often find that during perimenopause that their symptoms will get much worse and perimenopause can last years and even decades. I, myself, was terrified of facing perimenopause and PMDD. The two combined would surely have done me in, especially should they have held HRT out of my grasp.

 

In demanding that women not have hysterectomies or refusing to provide the appropriate HRT after a surgery is essentially telling women that they would rather that a woman suffer for longer and in most cases much more severely than taking a slight chance later in that woman’s life. I did not make the decision to be on HRT lightly, but I also understand that the studies currently used in regards to hormone replacement therapy are not appropriate for all populations of women, in fact they are very limited, and thus their basis often doesn’t apply to the vast majority of women. It is a scare tactic. The doctors and insurance companies are choosing for us how we should live our lives and what we should be willing to suffer through. This is as much a reproductive right as abortion is. It is my body. It is me that is suffering. It is me that would have killed myself had I not gotten proper treatment.

If estrogen HRT kills me later on down the line (which I highly doubt), at least I got to live the life I chose, not the one that some doctor chose for me. This is about freedom to pursue your happiness, your health, and your rights as a woman.