This is a sort of unusual post on Sweet C's Designs- and a little more personal than the recipes, travel and lifestyle posts I normally publish. If you're sensitive to personal medical information, especially details of the female reproductive system, I'd skip over this post. 🙂 I usually don't post about personal stuff here- but this was such a scary time for me, and I know I have a few readers who are going through the same thing.
I'm choosing a sunset snap I took last night in Seaside, Florida to represent this post. I couldn't really think of anything better- it perfectly bookends a long, painful, and trying part of my life- for more than one reason, that will come clear below.
First off, let me say I've never talked in depth about my journey with endometriosis. It's not for lack of interest- I just have never sat down to organize all of my thoughts. I feel like they could fill a book instead of a website- full of failed treatment options, crushing pain, surgeries that didn't work, and lots of by-product pain. Every month, my periods were a nightmare. I'd end up in the hospital with cramps and cysts so painful I couldn't walk. Ever since I was in high school, I had terrible, terrible period pain.
After my daughter was born, I decided to try some more aggressive methods to deal with my painful periods. I had already had laparoscopies and tried different hormonal methods of birth control in an effort to slow or reverse endo- but nothing worked. Since I knew I probably didn't want more than two kids, we could get a little more creative with treatments. Unfortunately, nothing worked.
In fact, I got a lot worse. I developed odd side-issues- like crushing arthritis pain in my feet and ankles- that orthopedic surgeons, rheumatologists, endocrinologists, and my OB couldn't figure out. I could barely walk- and when I did, I was in major pain. I noticed my pains were worse when I had cramps, especially if I was near my period, and I started to wonder if it was connected. Most doctors laughed and scoffed at that idea (my OB surmised it very well could be, due to an overflow of inflammation that would subside when I was on high doses of prednisone. Turns out he was right.)
All of this is to say, I had tried everything. I went for alternative medicine, diets, any kind of endometriosis therapy I could find. Nothing worked. So I decided that while there are very large risks with a radical hysterectomy, it was worth trying. This incredibly long exposition is to underscore this: I can't say I'd recommend the procedure unless you're at the same point.
Now- to the recovery.
Having a Da Vinci surgery, with a doctor who heads up the Da Vinci team at the hospital I chose, was the best decision ever for me in this stage of life. The surgery itself took only a few hours- and they were able to do it completely robotically. I have three tiny incisions (that look like a coin slot on a piggy bank, but a bit smaller) that healed very quickly. I was in pain for quite a while- and I can't imagine how much pain I would have been with a traditional hysterectomy method. I was only in the hospital for one night- though my doctor said some people who live nearby go home the night of surgery. Since I had a lot of adhesions burnt off and a history of complications from abdominal surgery, he wanted me to stay in the hospital longer and I was perfectly happy to!
I chose to have my surgery right before Christmas because it worked for my mom's calendar so she could come watch my kids- and my husband would be taking off a week from work and be a little more flexible with his schedule. This was both great and completely stupid at the same time- the holidays are not an easy time to rest and relax, especially when you have two kids under five. I wanted to do so many things, and either did them and suffered- or felt like I was missing out. It wouldn't have worked any other time for us, but if I could have done the surgery in a less stressful time, that would have been better.
That being said, I recovered pretty fast. I was holding my kids a few days after the surgery (with Da Vinci, there is no weight limit to lifting like with other surgeries. My doctor said I'd be way too tired before I'd ever be able to lift anything that would damage the work he'd done), and I was able to walk around immediately. I was very, very sore- like I had done thousands of sit ups- but all of that had faded after about 2 ½ months.
I was very tired though. The fatigue only recently lifted completely- I'd say about 4-5 months out. Some of that was due to hormones- when you have a radical hysterectomy, you go into menopause overnight- and some just from the major surgery. I have been using pellet therapy (estrogen and testosterone) for a few months, and while we're having a hard time getting me to the right levels because I apparently burn through them too quickly, but it is helping me a lot. My doctor loves pellet therapy for me because there are fewer side effects, and it has been helping to cushion my joints. We both felt it was important to be on hormone supplements to help protect my bones and my heart, since menopause at 33 isn't normal. If I didn't have a history with PCOS or ovarian issues, we could have ket my ovaries in tact and not had to do the supplement route- but for me, keeping them would have meant a much higher chance of recurrence of the endometriosis.
Other than some issues getting enough hormones to not feel sluggish, I feel great. I don't have any side effects worth noting- except for a period of time after while my hormones were fluctuating wildly and I was extremely depressed about not being able to have more kids. I don't want anymore than two kids- and had decided that long before the surgery- but I did wake up a few times crying because I couldn't have more kids- and babies were all I could think about. I never thought I'd grieve the loss of my uterus, but it messed with me for a few months. I think a lot of it was hormonal though, because I'm fine now. Don't be shy about asking for anti-depressants if you need them. I didn't get to that point, but I was close. If you have hormone-linked depression, I'd ask about it even before having a hysterectomy.
As for everything else- I am great! It's funny to talk about the crushing arthritis. Two years ago, our family was on vacation in Ocean City, Maryland. I was excited for the kids first trip to the beach, but I was in such horrible pain, all I could think about was how much it hurt to walk. I vividly remember thinking "how am I going to walk all the way to the beach?", instead of remembering the kids frolicking in the sand. I also remember desperately wanting to wear my tennis shoes everywhere, because flip flops were akin to torture. I even woke up in the middle of the night and put on tennis shoes to go to the bathroom, because it helped with the pain! How insane is that?
I can't believe I lived like that for so long.
About a month after the surgery, all the pain was gone. Just up and left. I really do think it was from a surge of inflammation- like my body was focused on fighting my uterus so much, it started attacking other parts of my body. I've also had less immune system flare-ups (I wish my immune disorder was completely gone, but I still have some recurrences, although they are now just an irritation instead of life-altering- and they are often when my hormones are not balanced while we're still finding the right dose for me).
It's been a long road- and I continue to feel better everyday- but it was totally and completely worth it. I don't have any major side effects, I didn't have any complications (outside of pain that stuck around for a while, which isn't surprising based on the amount of endo they found all over my abdominal cavity), or real issues. I have had some "phantom" pains, where I get the cramps I used to, but for a short period of time. They usually fade if I stretch or walk a bit, and my doctors assured me its normal. I also am a lot more tired than I should be sometimes, but I've heard that can be pretty common in the first year- as can the dreaded swelly belly! My stomach can go from (ahem) relatively flat to looking like I am 8 months pregnant in a few minutes. I have to really drink a ton of water to combat swelling, which can be hard. I have heard from a lot of other people the swelly belly goes down gradually about a year after surgery- it is the last remanent, though of all the issues that can happen after a hysterectomy, I will be thankful mine is just a puffy tummy once and a while. Once my stomach is less prone to swelling, I will consider myself side-effect free.
My endometriosis could, in theory, come back again even without a uterus and ovaries- but for now, all is well. I'd do the whole thing again tomorrow!
If you're facing a radical hysterectomy, definitely do your research. Find what works best for you and for your doctor. Find a medical team with a ton of experience (I've read so many horror stories....), and go with what they feel comfortable with. And then enjoy your new life!!!
So the photo from Seaside... two years ago, I could barely walk to the beach or even enjoy our vacation. I took that photo after biking a little over a mile (in flip flops!!) with the kids on the back of the bike in a bike trailer- and then walking around the cute little town. I walked all over Krakow and Tbilisi last month- spending days on my feet. I've been able to wear high heels again- something I haven't been able to do since before my kids. I haven't had painful periods, or wanted to just sit inside with a heating pad on my lap. The change is incredible- I really feel like I have my life back. I keep feeling better and better everyday!! The difference between the two trips is undeniable.
I only wish I had the surgery right after my daughter was born. I feel like there is so much I missed out on, being in such crushing pain. I spent thousands and thousands of dollars on medicines, therapies, surgeries that didn't work. My overall health is so improved- which is so funny considering a lot of issues I was dealing with had no relation to my reproductive system.
I still have a lot of weight to lose from all the rounds of pre-conception hormone therapy (I gained 50lbs before I got married because my periods had completely stopped- which made finding out we had a honeymoon baby all the more surprising- a funny story for another time), but right now I'm just enjoying the life I feel like I got back, and trying to become a lot more active. It will all come into place... now that I feel like myself again!
I have a doctor who is fabulous beyond words. I actually found him when working in the Senate, and though my doctor is in Littleton and basically live in Loveland (about an hour to an hour and a half if Denver traffic is bad), I still go to his office for almost everything. If you have endometriosis, you've most likely been treated like you're insane, a drug-seeker, a drama queen, or any other myriad of things from doctors. FIND ONE YOU LOVE AND TRUST MORE THAN ANYONE ELSE IN THE WORLD. And if you need the name of mine, email me! I send all my friends there.
If you want to know more, or are facing a hysterectomy yourself and just want to chat- email me! sweetcsdesigns (at) gmail (dot) com . I feel like most of my readers don't want to hear more details, but I have no hang-ups on talking about the surgery or the aftermath. It's a really scary and lonely process, and I don't want anyone to feel alone like I did!