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.

One thought on “Lupron and beyond…

  1. Hello Laura,
    Very interesting your testimony. I am a Spanish social worker researching about this subject. It is not easy for women finding the understanding from gp or specialists. Consequently they didn’t have the exact diagnosis and they won’t have the possibility to have Hysterectomy. Fortunatelly you found the right answer and you have a new life (after Lupron, of course).

    Liked by 1 person

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