PMDD or Menstrual Psychosis?

Let me explain, in my own experience, the difference between PMDD and menstrual psychosis (Brockington, 2005) having lived both. Now I will note that menstrual psychosis does not usually occur every cycle, it may happen for a few consecutive cycles in a row and stop permanently, it may start and stop over a period of years, it may last for a year or just a single month. Its also important to note that there is so much stigma attached to mood disorders and hormones and mental health, there is even more stigma attached to psychosis, in many cases those that may be experiencing psychosis will never get help because of that stigma. I was nearly one of them.

PMDD is brutal enough, but can you imagine welcoming months where its just PMDD? When PMDD seemed so much easier to deal with? No, not many can. Not the individuals who struggle with PMDD on a cyclical basis and not those who have never experienced it. There are those like me though, not many, we are a tiny sliver of the population and I wish that population didn’t exist at all. Menstrual psychosis is both alike and unlike postpartum psychosis. Both are acute phases of psychosis that end, with menstrual psychosis, the end may be at the onset of menstruation, or shortly after. Both are seen as conditions not to admit to, to not get help, and as monstrous. Unlike postpartum psychosis, menstrual psychosis can strike an individual at any point of their reproductive age/cycle, several of the cases are that of teenagers who never experienced pregnancy (Brockington, 2005). Some symptoms of psychosis are mania, delusions, suicidal and/or homicidal thoughts/actions, hallucinations, depression, insomnia, paranoia, dissociation and there are more but those are the main ones. Those are ones that I personally experienced, though I never acted on any homicidal thoughts, there were enough to make me want to lock myself up and throw away the key or to die by suicide just to prevent me from hurting anyone if I truly got lost in the maelstrom.

If you are experiencing any of these symptoms mentioned above now or have in the past, please seek out help! You have rights and you can have a say in what kinds of treatment you receive regardless of the cause, but you owe it to yourself to get help.

There is hope. You are not alone.

I had PMDD from the start of menstruation. For me it started as horrible cramps, bloating, flu like symptoms, migraines, depression, anxiety, and self harm. It affected my education, my friendships, my family and myself greatly. I developed numerous destructive habits and behaviors. Every month was a battle that I did not know the cause and was just downplayed that every other woman who menstruated struggled with. I had no idea. My mom had no idea. My doctors had no idea. I also had PCOS, which in truth I was thankful for because even though I hated what it did to my body, I was stable in the months in which I did not get my cycle. And when it stretched on for months and months of me not getting my cycle and being infertile, I felt relief. I hated birth control, it always made me feel ill and off but I would take it for a few years, then stop, then start. I ended up missing a lot of work, every month the migraines and the mood swings would take over. The debilitating cramps and always getting sick. It took a toll on my relationship and my career, I couldn’t be trusted. I can’t blame them, I didn’t trust me either. I struggled through my 20s, went through college, held multiple jobs, found stability finally but still it was only at the grace of those around me and who supported me.

Menstrual Psychosis – Hell has a name and it is hormone fluctuations.

I did not have menstrual psychosis until after the traumatic birth of my second child. At that point I was told it was postpartum psychosis. Later, you can find menstrual psychosis written down in my medical files, they just never told me. It didn’t go away though after 8 months postpartum. It kept coming back, no in the same extreme way each month, but every few months or so, it crept in and I was lost again. I don’t know why some months were so much worse than others. I do know that I was misdiagnosed for a long time, bipolar does not include those symptoms of psychosis. I do know that my psychiatrist was way over their head. I do know that all the doctors and hospitals I saw should have connected the dots to my cycle or listed to me when I told them that it was connected. I know I was failed by our medical community at large. Can I fault them? No one wants to admit to psychosis and treating psychosis is still barbaric to this day. Not that ripping out my ovaries and uterus is not barbaric but it just isn’t the same when it comes to the brain.

Psychosis does not mean you are a psychopath.

The worst parts of the psychosis was the mania and delusion and then the hallucinations that followed. I experienced the mania/hypomania more often than I experienced the hallucinations, always before I ovulated. Estrogen is a feel good hormone after all. I experienced the hallucinations after ovulation, when progesterone spiked. The spike sent me to the lowest places I could never imagine. I experienced mostly auditory hallucinations, but the developed as images sometimes, mostly in my head but sometimes I felt them hanging over me. I hallucinated angels tell me to end the suffering that my children were going to have to live through. They told me to kill myself so many times. I fought and I fought, but only a small part of my brain at those times knew this wasn’t right, this wasn’t real. Thankfully it won most of the time. I’m not afraid to admit I tried to die by suicide. No, I do not think its selfish. I don’t care what anyone else says. I know what I faced, I know what I felt, and I know that it was for protection. I’m still here, I’m still fighting, I’m trying to get the word out.

I struggled with paranoia and impulse control. I still can struggle now, but its not to the same extent. I didn’t believe that people were out to get me, rather that everyone judged me and found me wanting. I was also delusional in certain instances, believing I could be or do something that I just couldn’t or shouldn’t even attempt. I also struggled with dissociation, such as derealization and depersonalization. Where I felt nothing was real or that I was not part of my body, like an outsider. I even experienced out of body experiences in some of the worst moments.

All of these symptoms were on top of the regular PMDD symptoms, the rage and irritability, the rapid mood swings, the flu like symptoms, the cramps and migraines. I could barely breathe but when I had months were it was just the PMDD stuff, I felt relief. I could deal with that. The psychosis always came back though.

My memories are faulty, as is often the case when people suffer psychosis and I struggle with PTSD from it all now. I struggle because I can’t remember my daughters when they were little, or concerts I went to with my husband. I can’t remember so much or really who I was before all this mess. I get glimpses, but its like looking through a stained glass window, its distorted, both beautifully and disturbing in the lack of clarity, wholeness.

Nearly two year ago, I found out about PMDD and went down a new path of treatment. I ended up having surgery to remove my ovaries, uterus, and cervix and now am in surgical menopause. I manage my hormones with estradiol hormone replacement and as long as I keep it stable I do as well as someone who has gone through psychosis can be expected to. While my life may not be fun or what others expect life should be, I know where I have been and I am thankful every day that I do not have to face that. I survived years of menstrual psychosis, without being locked up and the key thrown away. There is hope.

If you or someone you know is struggling with PMDD or another hormonal mood disorder please consider checking out the resources over at the Gia Allemand Foundation(www.giaallemandfoundation.org), a nonprofit organization that is dedicated to help those who suffer from these debilitating illnesses.

April is PMDD awareness month. Please pass this on!

 

  1. Brockington, I. (2005) Menstrual Psychosis.  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1414712/

Mismanaged

I can only truly remember a few things that followed in the next years. I am not sure in what order they actually come in. They are like six second GIFs. They are not connected to any particular time. There are a couple I know approximately when they happened but nothing concrete. I has placed in inpatient hospitals at least 5 times in 5 years. Probably should have been a lot more. In those 5 years I had tried 50 different anti-depressants, anti-anxiety, mood stabilizers, anti-psychotics, and other psych drugs to try to level out my moods. I also wasn’t sleeping. We tried every sleep aid on the market, including Zyrem a form of GBH. I couldn’t have more kids without triggering post partum psychosis again so we tried a lot of birth controls but they did horrible things to me. For example, continuous bleeding for months and they told me to just ride it through, it would eventually end, it didn’t. My mood was already so unstable I don’t know what to attribute to the birth control, the medications, or just me. My husband ended up getting a vasectomy.

From the moment of my Bipolar diagnosis they had me on mood stabilizers like lithium or Zyprexa and my weight started going up and up uncontrollably, devastating me even more. I was going to be that horrible, insane, fat person who should have never been a mother. I didn’t bond with my infant daughter the way I wanted to. Maybe she knew inside herself how messed up mommy was. I was an ugly person now. I was irritable. I had rages, and though I was so scared of hurting anyone else, I tried to turn it all inwards. I became impulsive and compulsive. I took all kinds of risks. I stopped caring about what was best for all of us and cared only about what was going to get ME through that moment. I devastated our finances at a time I was on medical leave because I couldn’t take the stress from work without becoming suicidal. I told lies, lies, and more lies. I hurt my husband over and over again claiming he was abusive and didn’t care for anyone but himself. If he kept me from things that “made me happy” he was perpetuating the cycle.

By 2012 we had tried so many things and I was getting worse. Late 2012, my doctor suggested ECT treatment. I was willing to try anything to stop this. I underwent 22 extensive ECT treatments between December 2012 and February 2013. I remember very little. I don’t remember taking my oldest daughter to her first play of the Nutcracker for Christmas. I have pictures, but I don’t recognize them. I remember they always had a hard time getting the IV in before each treatment. I remember them struggling to get right strength of treatment and were worried because they kept pushing it up and up. I remember the sadness in my husbands eyes when I would collapse in the car afterwards for the long trip home. I remember the hopeless when we decided it wasn’t working for me. It had been my last hope.

In 2013, I managed to get a little strength at some point. Documenting when I was hypomanic and when the depression hit. I found a cycle. Every month. Near the time I would ovulate I was hypomanic, when ovulation hit I would crash and suddenly become despairing and suicidal for awhile. My period would come and something happened, I wouldn’t say I was normal but I was better than I was the previous weeks. Something told me that this was hormonal. It was tied to my menstrual cycle. Excitement!

My husband concurred with me and we went straight away to my psychiatrist. I presented the information to him, with my husband backing me up. I asked for a hysterectomy. The next words out of my psychiatrists mouth destroyed me. “They don’t do that.”
Then he talked about rapid cycling, which I probably had since I did cycle through hypomania and depression more than 4 times a year. I wanted to argue. And yes he did agree that hormones could have some impact on my moods but they were not the cause.
So on we trudged down the list of pills, trying old ones in new combinations, trying just released to the market, trying off label pills. Pills, pills, and more pills. I had been trying therapists but never made a connection with them, I didn’t feel it was in my head. It felt more like that something else was taking over my mind and body.

I began to get really hopeless. The suicidal ideation came much more often, multiple times a day. I was hurting myself more. Trying to stop the thoughts and just feel physical pain. Cutting was hard for me but that didn’t stop me from bashing my head against walls or punching myself. I don’t remember what year it was but I remember one night in particular, I think my husband had just gone to sleep, I got up with the intention of cutting off my hand. Why? Because then people would believe that I was I truly handicapped, that I was truly sick. They could see it and they wouldn’t dismiss my pain. My husband woke up before I did more than grab the knife but he had to fight me to get it away from me. I think I might have gone to the hospital that time.

Things kept getting worse and worse for us. In 2013 my husband was laid off. I panicked and tried to go back to work, but someone had told them I was dangerous, they filled my position, and I was out of a job and no longer on long term disability as a result. I looked for work, my husband looked for work. Bills had gone unpaid for a long time but we had always managed to pay our mortgage. I put on a happy face and pretended I was well enough for this. I actually got a job. I lasted three months, barely, but it came down to every day I was driving to work I wanted to drive the car across the highway median into oncoming traffic. I was scared I wouldn’t stop myself one day. I had to quit. Shortly after this happened we got a reprieve, a small one, but it helped. I was granted disability after a second go at it. However, it depressed me even more.

In 2013 and 2014 I started drinking, binge drinking, and taking more pills than I should at a time. I would steal some of my husbands pills too.  My husband would go to sleep and I would sneak out of bed and start drinking to drown my thoughts, however, it usually just made the thoughts worse. I think it was 2014, I don’t know if I was actively suicidal or just no longer cared. I took about 100 clonazepams, 2 mg with half a liter of rum. This is where my past is important. I had weight loss surgery. Which meant I do not digest things very well at all, in fact I am missing part of my digestive track. Malabsorption. This fact alone saved my life that night. My husband found me moments later and called 911. They got there, stabilized me, something about my blood pressure being low. That’s all I remember. They had me on lots of IVs to flush out my system, you cannot stomach pump someone with gastric bypass. Amazingly, my stomach prevented me from killing myself by overdose. I went into inpatient treatment after that.

Pills changed again and I went back to living each day just to keep breathing, to keep my children alive.

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These were some of my daily pills, some of which I took more than once a day. These were my psych meds and two supplements. I had other medications for other issues not pictured here. It was daunting.

In 2015, my husband found a job. Across country. It was only a contract for few months. It was in the field he wanted to work and might help him get experience so he could find permanent work. I pushed him to take it. We didn’t move with him. I couldn’t be left alone with the kids all day, I couldn’t be left alone with myself all day. Those four months I tried to live in my house alone, and keep my kids over a couple times a week, but mostly they stayed with their grandparents. I got worse. I never kept a clean house, but it got horrible. Unsanitary. I stole my husbands social security number to open credit cards and loans so I could buy, buy, and buy more things. I screwed up paying other pills. I didn’t take my medicine like I should. I just didn’t care about anything anymore. The lies were horrible and I am sure that everyone saw through me but were too scared to confront me. They canceled my husbands contract 2 months early, the project was a failure (not him). I panicked. He was now going to find out everything I had done. The stress and fear overwhelmed me. I now have two scars on my thigh, one 12 inches long and the other 8 inches long. The day after he got home, after the fights had already started, the hallucinations started. Auditory. Telling me exactly what they had told me after the birth of my daughter.

My husband took me to the hospital. Now let me be clear, inpatient psych wards are not a place where you go to get better. It is a place for you to be watched and nothing more. They are often hell holes and you feel even more fear and are scared of getting hurt the whole time. I did my best to tell the truth but I wanted out of there. I was terrified of this one patient muttering how he was going to tear the red headed fat women who had a rose on her back limb from limb each night, how she was a demon sent from hell to destroy children. That she needed to suffer. I did not hallucinate that person, other people heard him too.

After a couple days, I was “stable” and could go home again. I was scared, I knew what I faced at home. A broken family, a husband who was sick of dealing with me, and a lot of hopelessness. In the next weeks he was offered a chance at another programming job in another state with his dream company. It was contract again, but it was longer. He didn’t want to leave, I said he had to for the kids. We had to protect them. We had to do our best to provide for them. We discussed it with my parents and it was decided that the children and I would live at my parents house while he was gone. I was never to be left alone on my own again. We all knew I couldn’t be trusted.

So beginning in August 2015, I began living with my parents again, so they can watch me and make sure I don’t do anything stupid. Mostly. Things are better then they had been in awhile. I can semi participate with my kids normally. No body mentions my lack of self care, but I am all too aware of it. I am lucky if I shower twice a month. Taking care of myself is beyond my ability. I no longer care what clothes grace my horrible body. Make up and hair are a thing of the past. I hid behind baseball caps every time I left the house. I was such a bad role model for two little girls.

Anyways, in the past year I notice that I am having hot flashes and night sweats and other symptoms. I look them up and they match perimenopause. I am only 32, how can I be in perimenopause? It’s something to latch on to though. I do more research and decide to try a phytoestrogen to see if they relieve some of the physical symptoms. I start taking it November 3rd. By November 7th I am convinced I am perimenopausal. I haven’t felt better mood wise in years! The hot flashes disappeared. So I go to the doctor and say I want my hormones tested because phytoestrogen shouldn’t have this big effect on me unless something hormonal is going on. Labs come back, I am not menopausal. It doesn’t change the fact that this estrogen is really doing something so I don’t let it discourage me for long. It is turning my personality around! I have energy. The smile on my face is not by accident or force, it is just there. The suicidal ideation is falling away. My irritability is calming down and I actually want to do things!

I decide to test it further. I start tapering off my lithium and a couple of my other psych meds. I keep feeling better. Unfortunately, I have a reaction the phytoestrogen I am taking, it causes hives in my throat, so I have to find another one to try. I do, and it works as well. I am on to something.

By late December I am off all psych meds, oh and I have lost 20 pounds without doing anything else. I am feeling on top of the world.

I start mood tracking, because this is definitely hormonal.

The journey begins

My story. I think that more women than care to admit have been where I was and need to hear this. This is long but you need to hear the whole thing before coming to any conclusions.

Let me first set some things straight. I am not anti medication. I am not anti supplement. I am not anti ECT. I am not anti doctor of any kind. I am against throwing pills at anyone with the expectation that something will eventually work. I am against labeling someone treatment resistant. I am against when someone refuses to listen, really listen to all the small details. I am against bias and sexism and knowing that there are treatments out there that can work but doctors not willing to consent to their patients wishes.

Short history to me. My period did not start until I was 14. At which point puberty hit me very hard. Weight gain, headaches, acne, etc… In fact it was around that time I started to suffer from migraines very often and constant headaches. My parents ended up seeking treatment for me a special clinic hours away to help me cope. In 2000, at 16 I dropped out of high school because it wasn’t the place for me and studied for my GED. That fall I went to community college enrolled in an associates degree program. During this time I met a person I fell in love with on the internet. December 2002 I graduated with my associates degree and moved to Texas to be with the man I fell in love with. About a week before my 19th birthday I got married. I was not a girl to be held back from what I wanted in my life.
A few months down the line, we were watching something in a movie theater and I ended up in excruciating pain. Went to the hospital, had tests and ultrasounds done and sure enough I had PCOS. This explained the absent menstrual cycles that I wasn’t complaining about. Saw a doctor, they said birth control. I chose Depo-Provera (progesterone only injection) because I hated having periods. It didn’t help my weight issue. Beyond that my PCOS went untreated and I didn’t stay on birth control, I didn’t do well on it both physically and mentally. I didn’t really think anything of it at the time. Many women don’t react well to birth control.

Fast forward to 2007. We now lived in California, near my parents. I was in the process of having weight loss surgery to try to regain my life and start over. I was young and immature still but that is life. After weight loss surgery your menstrual cycle returns with a vengeance if it was stopped and you become regular again within a very short time. Something I hadn’t experienced in a long time and was infertile (due to PCOS) prior to the surgery. Shortly after my weight loss surgery I got pregnant. My doctors suggested abortion because I was putting my life at risk for what could possibly be a deformed child due to my surgery. I was able to maintain both the pregnancy and the weight loss through a lot of hard work and a lot of support. I have a beautiful daughter who is happy and healthy, who was coincidentally born one year to the date of my weight loss surgery. I suffered from a bout of post partum depression after her birth, was eventually treated for it with anti depressants, and rebounded to live a more productive and healthy life with my family.

Fast forward to early 2011. I was about to give birth to my second baby. Another little girl. In the last couple years I had made great headway in my life. I had my taken good care of myself self and lost 135 pounds after the surgery. I was raising a beautiful daughter with a head full of strawberry blond hair. I had finished both a bachelors degree and a masters degree in accounting. I had recently transitioned from a contract data clerk to a full time industrial engineer for an aerospace company. I thought I was beautiful, loved my clothes, even though I was still a size 14/16, I was confident and proud of myself. I felt vindicated in my choices and I had a happy beautiful family to show off for it. My husband still supported me in everything I did!

My world came crashing down during the birth of my second baby. I have flashbacks to those few moments. Trauma doesn’t have to meet a certain definition to be traumatic to someone. All it has to do is trigger the fight or flight sensation, and especially if you can’t respond with either one of those actions the trauma will take a huge toll  on you. I have precipitous labor. Meaning without warning and very sudden. I was in a hospital, they had induced labor because the day before she had been breech and I was schedule for a C-section. She had turned and they wanted to push the labor forward so she didn’t turn again. After about 8 hours into it, on epidural, my water broke. And my body took over. My control was ripped from my brain and my body wanted to expel the baby as fast as possible. I felt like I was being ripped in half. I felt pure and simple terror. Someone was going to die, I was sure of it. If it wasn’t me than the baby was. It only took two minutes from when my water broke. It seems like my screams lasted longer. I know I wasn’t fully dilated because they had just checked me 30 minutes before and I was only 5 centimeters. As soon as she was out I blacked out for a split second, and then became aware that my baby was lying on the birthing bed, not crying. Terror hit all over again. I couldn’t get the strength to reach for her. I think I was sobbing, so scared. While I was struggling to regain strength an orderly walked in to deliver blankets and saw the scene. I don’t know if he said anything but I did see panic in his eyes as he gaped for a second and then darted out the door calling for help. A few moments later a nurse dashed into the room, panicked as well. She got the baby. The baby was breathing. Everything was a daze after that. A lot of tests happened and then they laid her on my chest, while I struggled to wrap my arms around her. I think we stayed in the hospital a day longer than usual. She wasn’t preemie but was very small, we had to put her in preemie clothes and diapers and they still hung a bit on her. If she hadn’t been that small I would have suffered severe internal damage.

She is a fussy baby. Always has to be held, mostly by daddy, and is very colicky. I am stressed, exhausted, feeling like a failure because my milk again won’t come in. I cry a lot and I hide a lot. I keep trying to put on a happy face, for my family, but something is going on in my head. I had post partum depression with my first. So its not unexpected it would happen again. It feels different. More ominous. A month or so goes by at home and I get worse. I put all my energy is getting physically fit again, trying to outrun the demons in my head. Within two months I am back to my pre-pregnancy weight, but I haven’t outrun the demons. They are getting stronger. Its not someone else’s voice I hear. It is my own. My inner self telling me I have doomed these innocent children to the torture that is called life. That they are going to suffer in pain for the rest of their lives and then they will die and their souls will be tossed into oblivion. That by me choosing to have children I have intentionally caused their pain and suffering. I placed a death sentence on them. Then the visual hallucinations started. Visions of me suffocating my infant. I had just enough logic to understand that this was not real and that there was something very wrong now. I collapsed in the middle of the night, in the middle of my living begging my husband to call my mom. She came and held me, for a long time. They promised that this wasn’t real. That my brain was hurting me and that it was telling me horrible lies. They promised the my children were not doomed, that they were not going to suffer, that they would live lives with happiness and sadness in them but that they were not doomed. My family is Christian, they assured me that my children were not doomed to die and that their souls were not going to oblivion. I couldn’t believe any of this at this point. My mind had been poisoned by a long, slow trickle. I told them I wanted help, I didn’t want to live like this. My mom took the girls that night, not to keep them safe, but to keep me safe, to keep me from torturing myself, and to let me try to rest. I don’t remember if in the following days I went to the hospital or not. My memory is vague after that night. I know I saw a psychiatrist in the next couple days who diagnosed me with the little known post partum psychosis. I was now just like Andrea Yates. I was a monster. They put me on medications, I can’t possibly remember which ones now. They encouraged me to find a therapist. And told me to take is very slow and easy, to not let myself get overwhelmed or exhausted, that those would certainly trigger the hallucinations again. In the next months I tried going back to work, had my kids with me at certain times but they spent more and more time with their grandparents. I tried, I really did, but I was failing. I wasn’t getting better. Several months down the line the doctor said this was no longer post partum psychosis. They threw out a new diagnosis. Bipolar Type II. The real war began.

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!

Lupron and beyond…

The afternoon of April 26th, I was very tired and was forced to nap. This doesn’t usually happen so I consider it a side effect of the Lupron. The following day I was exhausted again. My period had stopped and it was usually a good day for me in my history. So again I attributed it to the Lupron was doing something! Which to me was good news. April 28 came and my anxiety levels were through the roof. It was pushing at my mind and at my heart. I could not sit still just like my mind would not stop racing. Again, I wasn’t supposed to have any PMDD symptoms on this day of my cycle, it had to be the Lupron. I ended up going for a 3 mile walk to work out the anxiety, it did help because it absolutely exhausted me. April 29 I was moody and irritable. I began doubting I had done the right thing. I had made another bad choice. April 30th I woke up feeling positive, a significant change from the previous day but things progressed during the day and I became angry and cranky again. May 1, day 8 of my usual menstrual cycle, I was doing better, but I was hot, which made me a bit irritable. May 2 came and went and I didn’t have a single complaint, the same for the next two days, even after getting a huge bill from the IRS.

May 5 arrived and it had its own issues. First off my dad was undergoing surgery and it really stressed me out and caused panic attacks. I was weepy all day. On top of that I started spotting, not too bad but it was more than just lightly and I never spot between periods. I also had bad cramps and it felt like my ovaries were being twisted and tortured. The next day the spotting and cramps continued but added to that was this heaviness in my chest, like I couldn’t get enough air. I called the doctor, they couldn’t treat me because of the chest issue and suggested I go to the ER. I did not want to do that. I was scared again. I was sure I had chosen wrong and that Lupron was going to be a disaster. I read and read, and realized what I was experiencing was the hormone surge!

Lupron works by working the pituitary glad and making it over produce LH and LSH in turn stimulating the ovaries to produce more and more oestrogen and progesterone until the ovaries go into panic mode and shut down.

I suffered bleeding, cramping, and body soreness one more day, May 7. However my mood was doing wonderful that day. Nothing could keep me down. Until May 13 I had no issues what so ever. I was even able to stop my caffeine and soda addiction cold turkey! May 13 I was doing great but that evening I snapped a bit, I looked in my journaling history and this is usually the time of my cycle that my progesterone is spiking. I should be off my rocker by now. May 14 was a hard day. I was very irritable, a little bit of rage, mood swings and crying punctuated by a horrible argument with my husband in which I could not seem to control what words came out of my mouth. Looking back on the episode later that night it wasn’t as bad as I thought. I had not once had suicidal ideation or an intrusive thought during this time. The rage felt blunted. The crying was simply frustration. I didn’t feel worthless. Something was different!

The next few days were blissful. I was calm, energetic, happy go lucky, and I felt alive. I could think clearly, my brain was working again.

On May 17, I spoke to my doctor again, I wanted to be able to make arrangement to go back and see my kids as soon as possible, so I was anxious to discuss the timeline for surgery, which I knew I wanted more than anything at this point. He understood and unexpectedly suggested we do the surgery June 9, 2016!! We got the ball rolling on that!

May 23, the day before my next Lupron shot, I was a little irritable under the surface but that is the only thing I could mention in all those days since May 14th. The next day I had my second Lupron injection. And off I went to live my life. I was still expecting at this point to have one final menstrual cycle, starting around May 26th, but it never came.

My days up to June 9 were wonderful. I was full of energy, happiness, and excitement. I had my bouts of doubt and anxiety but it was nothing, I brushed it off, talked with my husband and we went about our new lives together.

 June 8 my anxiety was very high of course. I was having major open surgery the next day. I have had major surgery before, gastric bypass and gallbladder removal. They were both laparoscopic, this was going to be open. Needless to say I did not sleep that night. I had instructions not to eat or drink after 11 p.m. which was actually pretty difficult as far as not drinking goes. I always have water sitting by me to drink throughout the day and night. It was also not fun because my husband had gone into work at 7:30 that morning and did not get home until after 9 p.m. and then had to continue to work until 1 a.m. before he could call it quits. Very frustrating and tiring for him on top of my nerves.

The day of surgery is here. I am to check in at the hospital at 5:30 in the morning to go over the paper work and get prepped for surgery at 7:30. The hospital is only 10 minutes away from our tiny apartment so getting up at 4 in the morning leaves us a lot of waiting around time. I take a long shower, trying to get the hot water to soothe my worries about the next
few hours. My overnight bag is all packed but all I really need is my cellphone, kindle, socks, and chapstick. So glad I have a pixie cut for my hair!
We get to the hospital and the check in process goes very smoothly, no questions or glitches. I can’t believe that something hasn’t been screwed up, I really can’t! Am I dealing with insurance at all? We wait about ten minutes and a nurse comes out and calls my name to follow her along with one other woman. Off we go! We are each led to an individual pre-op room and the nurse who brought me up will be my pre-op nurse, getting me set up for the surgery and answering any questions I have. She is very nice. A couple of other techs work with me for blood draws, setting up the leg compression wraps, and getting more signatures from me. The gown is a joke, barely covers my front. Really people, you won’t offend me if you ask me if I want a bigger gown. I know I am fat, its a fact of my life. My husband is calmly sitting by me the whole time.

Time for the IV. If nurses knew about me before they tried this they would cringe and go looking for someone else to do it, always. I tell my pre-op nurse that my veins are hard to get to and that they roll, a lot. That I often get stuck more than two times and I am sorry. They put a hot compress on my arm and let it sit for about five minutes and then make a go at it. My nurse is kind, has gentle hands, but the needle just cannot get my vein to sit still long enough to get through it. I still have bruises from the first two attempts nine days out from surgery. She makes a call to the IV team and puts the compress back on my arm. I’ve gotten use to this routine. No biggie. My husband looks ill. They put a warming blanket on me.

Time passes, I just sit in silence or talk about the small things with my husband. Nurse checks in every once in awhile to see whether the IV team has come in or not. Its after 7 am now. The nurse calls another of the pre-op nurses to try to do the IV on me, they can’t wait any longer. I tell her to go for the hand, I know its going to hurt, I don’t care, it’s the best option at this point. She gets it the first time and it barely hurt!

The anesthesiologist comes in to speak with me. He is rather shocked that I have been put under anesthesia so many times already in my life, 25 times. He is full of energy and it is apparent he loves what he does. He offers me options, I regent them all, and just want the basic no frills. We get along just fine. He gives me something for anxiety, which I welcomed though I wasn’t really feeling that much anxiety.

My doctor who is also my surgeon comes in and reviews everything with me. We are all laughing and making jokes. This is going to be a new life for me and my family, we should be happy! Neither my husband nor I have any further questions and in pops in the surgical assistant, the operation room is ready for us. I tell my husband I love him, he responds. We are beyond the need for physical affection at this point, we just know.

I am wheeled off to my operation room. Its a nice room, lots of light, sterile, and full of humming devices. My anesthesiologist is there with his nurse, there is the operating room nurse, my doctor, and his assistant. We get me transferred over to the operating room table very quickly and they ask if I am ready. I say that I am, and they put the mask on me.

The recovery team starts trying to wake me up. All I can think at that moment is I don’t want to wake up, I was sleeping so peacefully for a change. No dreams. Then I notice my throat is very scratchy and very dry. They ask if I want some ice, all I can do is barely nod my head. They spoon feed me a couple pieces and then I doze off again. This happens for probably a little over an hour. I do try to wake up but I am so groggy! Sometime during this period both the anesthesiologist and my doctor came to tell me how fabulous everything went, that it went better than they had expected and things looked great. Finally I am awake enough to start noticing my surroundings, what is going on around me, and listening to other people, whether they be nurses or patients. Pretty soon after that the nurse comes to tell me they finally have a room ready for me and are going to be taking me there.

About 12:15 in the afternoon I am installed in my private room. It is so peaceful. I feel so calm. I hurt, of course I hurt, I just had open surgery in which they removed some pretty major organs. I am still pretty tired and feel like I could go to sleep at any moment, and when I am left alone I try to do so. My husband comes awhile after 1 that afternoon to sit with me for awhile, but he is hungry and very tired and stressed. I tell him to go home after about an hour, I am not going anywhere and I am doing really well. This is all true. I don’t even have an estrogen patch on me yet.

Things go pretty well for my stay in the hospital. They finally put an estrogen patch on me but then had to move it because they put it on my shoulder (I told them abdomen) for some silly reason and the doctor came in and said what the hell. Other than that I got my catheter out in the early morning following the surgery. I walked then too, used the bathroom on my own, was able to get up and out of bed, sit in a chair, and get back into bed all on my own. The next day pretty much more of the same. I walked as much as I could and was switched off the pain pump to oral pain medications. Saturday showed up, June 11, I waited all day till the afternoon to hear the sweet words from my doctor, you can go home if you want to.

It was a vey nice hospital and the staff overall was very kind and gentle but I hate hospitals. For me, they feel like a place where death is just lurking around the corner waiting for you. The smell of them turns my stomach and I have a natural reaction of just wanting to run away.

My recovery from the actual surgery is going to be slow and I will likely still feel the effects months from now. However, the effects of the surgery on my symptoms of PMDD were immediate and absolute. The demon that has plagued me for five years, the demon with my voice and all my secrets, has fled. I look in a mirror and I see a woman who could use some work but look at the color of her eyes, they are actually pretty. The way her smile turns up the edges of her lips is perfect and so sweet. Her eyes sparkle, her freckles delight and her eyebrows express so much. The woman in the mirror I can actually say is pretty. But beyond that I can see that I am worth so much more. Beyond that I feel human, hell I feel more like a woman now than I did before. I am interested in living again. My creativity is back. My fun, outgoing, happy go lucky nature is coming out more day by day. My jokes are no longer only sarcastic and jaded. They are corny and silly and shocking. I don’t feel the need to hide away anymore. My brain is useful once more! I am recovering from major surgery but I feel like a bundle of energy and want to get out there and do things. I have a long way to go and a lot of work to do to face the trauma and pain of the last several years. Now that I have treated my PMDD I have the ability to tackle it, to break old habits and start new ones. I have the ability to change and be changed.

What it all boils down to is that I was just hormonal. I know our society jokes about it and takes it way too lightly. I want that to change. I want to take back “being just hormonal.” Hormones can do crazy things to a person. Look at diabetes. Look at thyroid hormone disorders. Pituitary disorders. Hypothalamus disorders. Growth disorders. Why do we scoff at sex hormone disorders? It is no laughing matter. It is real. It should be prioritized. I nearly lost my life because of the attitude toward women and their hormones. I nearly lost my life because of ignorance and unwillingness to provide the right treatment to women. I nearly lost my life because my reproductive rights belonged to doctors, politicians,  and insurance companies.

PMDD touches hormonal disorders and mental health disorders. It is very complex and needs to be treated on all fronts. I am happy that here in the USA that PMDD was recognized as a disorder in and of itself in the DSM V, but I feel that is going to steer the issue away from the root cause. Hormones. Many women cannot be treated for just the mental health symptoms. It is a half assed approach at best. There needs to be open and honest discussion between everyone about PMDD and the treatments for it. My solution is not the solution for all women, not even a majority of women and I don’t suggest it as such. I can only speak from my experience however and I never want to see anyone discouraged from a possible treatment that could change their lives. I cannot stop the pain that PMDD causes in the women who suffer and those that suffer along side her. I can stop the ignorance.

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.

Post-Op Success!

Going on 4 months post op, I have learned quite a bit! There are just days where I gotta take it easy first off! I don’t have a baseline normal that I can remember from before PMDD (thanks ECT!) so I am pretty much just going with the flow of things and I’m not in a hurry to get anywhere. Most of how I feel seems pretty new to me.

Things I have learned since surgery.
1. My migraines and daily headaches from since I was 14 must have been my progesterone intolerance. They are gone.
2. My anxiety since I was 14 and panic attacks are gone.
3. What I thought was just simple PMS must have actually been PMDD all along!
4.No depression, no manic episodes, no hypomanic episodes, no hallucinations, no psychosis
6. Insomnia since I was 14 is also gone.
7. The number of PTSD flashbacks has greatly decreased.
8. No rage
9. I am still an emotional person. I get upset, frustrated, happy, sad, excited, scared, and so many more emotions. But they don’t push me over the edge, they are not too much to handle, and I feel in control.
10. I love myself. This one is hard to explain and its not something I expected after surgery. Since a young age I have battled very poor self esteem. I was always bigger as a child and then as an adult I gained a lot of weight for a variety of reasons. On top of that I was cursed with pale skin and tons of splotchy freckles. These last 6 years I didn’t want to leave the house because I was sorry that people had to look at me, the hideous monster. Today, I am still significantly overweight, but I look in the mirror and I see a sparkle in my eye, I like the color and style of my hair, and you know beneath the freckles my pale skin is a beautiful peach ivory. For a fat girl, I have a good figure and my legs are nicely toned and shapely. The thoughts of hating myself, thinking that I am making people suffer by their having to look at me, all disappeared after surgery too. I haven’t figured out why but I am so happy!
11. Losing weight! This is a bonus for me. I had decided that I would be happy with my weight (I weigh 257 pounds now) and just concentrate on being healthy. Since the surgery I have been able to be much more active (swimming 5-6 times a week with my kids) so things are really working for me. Like a lot of women I was very concerned about being on HRT for weight gain issues as I am already so obese. Happily though, like in #10 my obesity is no longer an embarrassment for me and as long as I do my best to be active and healthy now anyone who thinks its their right to have an issue with my weight can also bite me!

The most important thing I have learned since surgery for me is to keep my HRT on a steady keel! I am on .1 mg/daily patch twice a week. I change late evening on Wednesday and early Sunday morning. If I change them at different times (either too early or too late), my moods get wonky again within hours. I have a reminder set up on my calendar that my Husband gets notices on so we can make sure that it is always taken care of. It has taken me this long to identify just how I need to use my HRT.

My fatigue levels are high right now still. However I have a couple other issues that could be contributing to that so I can’t just blame it on being in Menopause at the moment. I won’t be able to take testosterone HRT as with my PCOS my adrenals still over produce androgens (testosterone too!) Next week I start iron infusions for my anemia and I have been taking B12 injections for the last month on a weekly basis. I am hoping this will help with the fatigue.

I would have to say that my life is better now than it has ever been. I’m not sure if it can get any better but I will keep trying new things and seeing what I am capable of! I know I have had a smooth ride throughout all this, maybe because I had such a horrible time these last few years, I don’t know, but I am extremely greatful that I had my operation.