Hello there lovelies! Boy has September been one heck of a month! I’ve debated writing this post, have even typed up a bit here and there only to delete it… not that I don’t want to share, I simply worry that it may be a bit too personal a bit too soon. But, such is life, this just happens to be my current time line of events – so what better time to discuss it than now.
* What is to follow is rather personal for me. I will briefly touch on the female body, organs, menstruation, surgeries, hormones, mental illness and some other topics that may make some uncomfortable or queasy (no gruesome details or anything of that sort). Just to give a bit of a warning first. *
You see, just over three years ago I developed this horrible pain in my right side, one so intense I became nauseated and could barely move from my parents sofa where my boyfriend and I were visiting at the time. My family became concerned with my appendix; my brother having to be rushed to have his removed before it nearly ruptured only years before, and so boyfriend picked me up and off to the hospital we went.
It was then that I learned I have, or had, ovarian cysts which were the source of this horrendous pain – it was also than that the ultrasound tech let it slip “I’m sure your thick uterus isn’t helping your pains either”, something no doctor had ever mentioned previously. Ever. Not even during this emergency room visit. Which I just left my being unaware of unmentioned, I wasn’t really even sure how to react. (But that does explain the horrible nearly bedridden menstrual cycles I experienced most of my life.)
Unfortunately, I didn’t have insurance at that time and slowly over the next five to six months the pains in my lower abdomen began to hinder many areas of my life. I started to not be able to work in the garden, lift anything with much weight, dancing (which I loved to do) and working out became too painful, until eventually even long nature walks built so much pressure they became too uncomfortable.
I knew something had to be done and I couldn’t ignore that there was probably more than I thought happening inside of my body; no way was all of this discomfort and what I could only describe as “pressure and weight” possibly from cysts alone, cysts come and go.
So I sought out any form of independent medical assistance I could find and eventually did find a clinic willing to work with me; I paid on a “sliding scale” (being very little per appointment and varying costs for tests and things) and they treated me as a “charity case” (and were able to write it off as such).
At my second visit after a round of ultrasounds it was discovered that as well having a thicker than normal uterus and ovarian cysts the majority of pains, discomfort and “heaviness” at this point were fibroids building in my uterus (noncancerous growths that can develop in the muscular wall, between the inner and outer walls of the uterus).
After some discussion of my options, it was decided that I would try “Lupron Depot” 3-month shots, they would stop my menstrual cycle which would stop the hormones feeding the growth of the fibroids and also stop the ovarian cysts by putting me into a sort of medical menopause. A temporary solution while we planned further (medically and financially).
This was the worst decision I have ever made. Not only did the doctor assigned to my case begin to treat me as a charity case, being very short and unhelpful. Leaving me in pain and discomfort for weeks because “the lupron should start working by week two”, when even the site for the medication says it will take four to six weeks before you will notice any changes. But the medication simply was not working for me, after my second dose (three months in) I was experiencing many of the side effects including terribly strong hot flashes and weight gain, but I was getting almost no relief from the pressure and pain in my abdomen.
Things then also took an unexpected turn for the worst with my mental health. Depression and anxiety that I have struggled with, but managed, for most of my life was suddenly unmanageable. My anxiety had gone through the roof and my depression was taking me to lows I have never been before. Together the combination of fear, depression and pain slowly took over every aspect of my life. And still, I wasn’t getting any physical relief from this awful medication or otherwise.
There came a time, over six months in, where the pains were just too much and I called to make an appointment – however my usual doctor was on vacation and they had to schedule me with someone else. A wonderful doctor, so very helpful, but also a surgeon, so there was no way I could transfer to him as my doctor as he was only filling in. With him I learned how horrible Lurpon Depot can be, how little help it can be for some, and that being on it a full year (as I would be by the time the shot then currently in my system worked it’s way out) was almost unheard of… not to mention, the doctor I was assigned to was retiring, so there’s a chance she just simply no longer cared.
I then attempted to switch doctors, seeing one other who was so ridiculous I wont even waste your reading time or my typing, but that was the last I ever went back to that clinic. It was all just too much. I was hurting, terrified, going through some of the worst depression and strongest anxiety I had ever experienced and not really being helped – I couldn’t take any more and sadly gave up. Yet at that time, I didn’t see any other option.
For well over a year I was simply “dealing”, I wasn’t living any more but rather existing. The discomfort and pains in my abdomen had taken over most of my life, and the depression and anxiety consumed what was left. I cared about very little, did even less and lost touch with many – including myself.
Finally in early 2016 I was able to get some insurance, still in a very limited network but much better than nothing and/or charity care. By this time the Lupron had also completely worked its way out of my system, and although I still got hot flashes regularly most of the other side effect had gone, even my depression had returned to a “manageable” level without medication (although not without trying, but, another story for another time). While the anxiety however, is still holding strong (part of that later another time story).
It took everything I had to work through the anxiety and finally make those first two appointments – one with an ob/gyn and one with a therapist.
The first meeting with my new gynecologist went amazingly, finally a doctor that not only listened but actually cared – he was very disappointed with how things had gone up until that point and wanted to help. After a round of some tests, ultrasounds and a scan we found that I had multiple fibroids within my uterus, the largest being a bit bigger than a grapefruit on the left side (which is odd as the right has always hurt more). My medication options were limited given the combination of the ovarian cysts, and so we discussed a hysterectomy.
Boyfriend and I have mutually agreed for years, for many personal reasons (maybe we’ll discuss that at another time as well) that children just are not for us nor in our future. We’re more the four legged, furbaby type. Although I will admit, discussing making it a permanent decision was a bit scary; it was no longer thoughts and words, it would be physically impossible. But still, for my health – and at this point sanity, we agreed that there is always adoption… should we ever change our minds in that regard.
All things considered, we went forward and on an early April morning I was admitted for a total abdominal hysterectomy via c-section (my fibroids being too large to go the robotic route), After spending a couple of nights at the hospital I was released to go home for just over five weeks of recuperating and healing.
I’m so thankful for a loving and supportive boyfriend who took amazing care of me and our kitties between going to work; he’s truly wonderful. And of course the best medicine in the world, kitty cuddles.
I was extremely sore but so relieved and excited to finally be on my road to recovery, and slowly getting my life back. Except, not all of the pains slowly and eventually went away. My sides still ached and throbbed, sometimes sending the pain into my hips. We gave things a few more weeks to let my body truly settle and get used to the new arrangement of things in my abdomen… but still.
After another set of ultrasounds we could see that my ovaries had already developed another round of cysts. Again discussing my options, the only things really available are hormone altering like birth control; which unfortunately I’m unable to take as any level drastically affects my depression and anxiety (absolutely horribly). That left on the table a second surgery, one that we knew was a possibility but were truly hoping would be avoidable. Given my age of only 35 when we did the hysterectomy, we had to at least try to save my ovaries and my estrogen supply and my normal progression into menopause with older age. However my ovaries decided not to play nice and left us with little other option.
Exactly two weeks ago today (as of the date of posting), I checked into the hospital again for a robotic Oophorectomy of both ovaries. This time I was able to be given the option of spending a night for observation or being released – my wonderful nurse recommended staying, but I just wanted to be home. In our bed, with our cats. So we came home.
And here we are. I’m still figuring out exactly where here is to be honest. Physically I’m finally returning to myself, I can’t wait to slowly start a workout routine again soon. However otherwise; I’m still adjusting to the hormone replacement therapy – bright green little pills. I haven’t figured out just yet if it’s the right dose… if my mood swings and “down feelings” are my body adjusting, an off dose or simply my depression trying to take a peek in during all of the other confusion. But we shall see! I’m certainly not giving up and it’s just a bit of trail and error from here. At least finally… finally, the real healing and moving on can begin.
My apologies for this turning into quite the book, I can’t thank you enough if you’ve stayed and made it this far. It’s certainly been a roller coaster, one that although I try hasn’t been very easy to discuss and be open about. Even though I’ve read the statistics and know I’m only one of millions of American woman who will go through this this year, it’s still difficult not to still feel alone sometimes. Thank you for staying, and sharing this odd and unfun part of my life.
Have you been there or are you there now? How did or have you been coping with this next chapter in your life? If you’d like to share, my comments are always open. Or if you’d like to share a bit more privately, you’re always welcome to contact me on any of my social media shared on the right and below.
As always, until next time – my best of thoughts, hopes and wishes with lots of love!