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.