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.

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.