6 Months Post-Surgery

This is a sort of unusual post on Avdaye- and a little more personal than the recipes, travel and lifestyle posts we normally publish. If you're sensitive to personal medical information, especially details of the female reproductive system, we'd skip over this post. We usually don't post about personal stuff here- but this was such a scary time for us, and we know we have a few readers who are going through the same thing.

Sunset in Seaside Florida- where we're visiting our parents at their new beach house.

We're choosing a sunset snap we took last night in Seaside, Florida to represent this post. We couldn't think of anything better- it perfectly bookends a long, painful, and trying part of our life- for more than one reason, that will come clear below.

First off, let us say we've never talked in depth about our journey with endometriosis. It's not for lack of interest- we have never sat down to organize all of our thoughts. We 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, our periods were a nightmare. We'd end up in the hospital with cramps and cysts so painful we couldn't walk. Ever since we were in high school, we had terrible, terrible period pain.

After our daughter was born, we decided to try some more aggressive methods to deal with our painful periods. We had already had laparoscopies and tried different hormonal methods of birth control in an effort to slow or reverse endo- but nothing worked. Since we knew we probably didn't want more than two kids, we could get a little more creative with treatments. Unfortunately, nothing worked.

In fact, we got a lot worse. We developed odd side-issues- like crushing arthritis pain in our feet and ankles- that orthopedic surgeons, rheumatologists, endocrinologists, and our OB couldn't figure out. We could barely walk- and when we did, we were in major pain. We noticed our pains were worse when we had cramps, especially if we were near our period, and we started to wonder if it was connected. Most doctors laughed and scoffed at that idea (our OB surmised it well could be, due to an overflow of inflammation that would subside when we were on high doses of prednisone. Turns out he was right.)

All of this is to say, we had tried everything. We went for alternative medicine, diets, any kind of endometriosis therapy we could find. Nothing worked. So we decided that while there are large risks with a radical hysterectomy, it was worth trying. This incredibly long exposition is to underscore this: we can't say we'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 we chose, was the best decision ever for us in this stage of life. The surgery itself took only a few hours- and they were able to do it completely robotically. We have three tiny incisions (that look like a coin slot on a piggy bank, but a bit smaller) that healed quickly. We were in pain for quite a while- and we can't imagine how much pain we would have been with a traditional hysterectomy method. We were only in the hospital for one night- though our doctor said some people who live nearby go home the night of surgery. Since we had a lot of adhesions burnt off and a history of complications from abdominal surgery, he wanted us to stay in the hospital longer and we were perfectly happy to!

We chose to have our surgery right before Christmas because it worked for our mom's calendar so she could come watch our kids- and our 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. We wanted to do so many things, and either did them and suffered- or felt like we were missing out. It wouldn't have worked any other time for us, but if we could have done the surgery in a less stressful time, that would have been better.

That being said, we recovered pretty fast. We were holding our kids a few days after the surgery (with Da Vinci, there is no weight limit to lifting like with other surgeries. Our doctor said we'd be way too tired before we'd ever be able to lift anything that would damage the work he'd done), and we were able to walk around immediately. We were very, sore- like we had done thousands of sit ups- but all of that had faded after about 2 1/2 months.

We were tired though. The fatigue only recently lifted completely- we'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 from the major surgery. We have been using pellet therapy (estrogen and testosterone) for a few months, and while we're having a hard time getting us to the right levels because we apparently burn through them too quickly, but it is helping us a lot. Our doctor loves pellet therapy for us because there are fewer side effects, and it has been helping to cushion our joints. We both felt it was important to be on hormone supplements to help protect our bones and our heart, since menopause at 33 isn't normal. If we didn't have a history with PCOS or ovarian issues, we could have ket our ovaries in tact and not had to do the supplement route- but for us, 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, we feel great. We don't have any side effects worth noting- except for a period of time after while our hormones were fluctuating wildly and we were extremely depressed about not being able to have more kids. We don't want anymore than two kids- and had decided that long before the surgery- but we did wake up a few times crying because we couldn't have more kids- and babies were all we could think about. We never thought we'd grieve the loss of our uterus, but it messed with us for a few months. We think a lot of it was hormonal though, because we're fine now. Don't be shy about asking for anti-depressants if you need them. We didn't get to that point, but we were close. If you have hormone-linked depression, we'd ask about it even before having a hysterectomy.

As for everything else- we are great! It's funny to talk about the crushing arthritis. Two years ago, our family was on vacation in Ocean City, Maryland. We were excited for the kids first trip to the beach, but we were in such horrible pain, all we could think about was how much it hurt to walk. We vividly remember thinking “how am we going to walk all the way to the beach?”, instead of remembering the kids frolicking in the sand. We also remember desperately wanting to wear our tennis shoes everywhere, because flip flops were akin to torture. We 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?

We can't believe we lived like that for so long.

About a month after the surgery, all the pain was gone. up and left. We do think it was from a surge of inflammation- like our body was focused on fighting our uterus so much, it started attacking other parts of our body. We've also had less immune system flare-ups (we wish our immune disorder was completely gone, but we still have some recurrences, although they are now an irritation instead of life-altering- and they are often when our hormones are not balanced while we're still finding the right dose for us).

It's been a long road- and we continue to feel better everyday- but it was totally and completely worth it. We don't have any major side effects, we 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 our abdominal cavity), or real issues. We have had some “phantom” pains, where we get the cramps we used to, but for a short period of time. They usually fade if we stretch or walk a bit, and our doctors assured us its normal. We also am a lot more tired than we should be sometimes, but we've heard that can be pretty common in the first year- as can the dreaded swelly belly! Our stomach can go from (ahem) relatively flat to looking like we are 8 months pregnant in a few minutes. We have to drink a ton of water to combat swelling, which can be hard. We 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, we will be thankful ours is a puffy tummy once and a while. Once our stomach is less prone to swelling, we will consider myself side-effect free.

Our endometriosis could, in theory, come back again even without a uterus and ovaries- but for now, all is well. We'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 (we'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, we could barely walk to the beach or even enjoy our vacation. We 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. We walked all over Krakow and Tbilisi last month- spending days on our feet. We've been able to wear high heels again- something we haven't been able to do since before our kids. We haven't had painful periods, or wanted to sit inside with a heating pad on our lap. The change is good- we feel like we have our life back. We keep feeling better and better everyday!! The difference between the two trips is undeniable.

We only wish we had the surgery right after our daughter was born. We feel like there is so much we missed out on, being in such crushing pain. We spent thousands and thousands of dollars on medicines, therapies, surgeries that didn't work. Our overall health is so improved- which is so funny considering a lot of issues we were dealing with had no relation to our reproductive system.

We still have a lot of weight to lose from all the rounds of pre-conception hormone therapy (we gained 50lbs before we got married because our 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 we're enjoying the life we feel like we got back, and trying to become a lot more active. It will all come into place… now that we feel like myself again!

We have a doctor who is fabulous beyond words. We actually found him when working in the Senate, and though our doctor is in Littleton and basically live in Loveland (about an hour to an hour and a half if Denver traffic is bad), we 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 ours, email us! We send all our friends there.

If you want to know more, or are facing a hysterectomy yourself and want to chat- email us! sweetcsdesigns (at) gmail (dot) com. We feel like most of our readers don't want to hear more details, but we have no hang-ups on talking about the surgery or the aftermath. It's a scary and lonely process, and we don't want anyone to feel alone like we did!