This isn’t a normal recipe/craft/etc post that I love to share on Sweet C’s Designs- its a bit, um, personal. If you’re not comfortable with basic medical terms and the names of female anatomy, this post really isn’t going to be your jam. And if you’re seeing this from an email subscription list- don’t worry, this won’t be a regular installment. I’m putting this out there in case there is someone else who has gone through what I’m going through right now and is comforted by the realization they aren’t alone.

I’ve been suffering from Endometriosis since shortly after my periods began in high school.

If you’re not familiar with endometriosis, it is a condition/disease where endometrial tissue grows outside of the uterus- causing mild to severe pelvic pain either during periods or sometimes nonstop. It can also invade non-reproductive organs like the stomach, bowel, colon, kidneys, liver, and even lungs!

Since Endometriosis is not easily diagnosed, and often confused with other reproductive issues, actual numbers of women affected is a bit unclear- but as many as 6-10 women out of 100 have endometriosis. Im not in any way a doctor, so check out the Endometriosis Association for more information if you’re interested in more information.

Endometriosis is real, and if you’re going through it, my heart goes out to you.

My Endometriosis Journey & Backstory

I’ve never talked about my endometriosis journey here, but let’s just say it has been a long, painful and often hopeless trial. Endometriosis is not only painful (and sometimes life-altering), but a very isolating condition.

Many people have never heard of endometriosis- and plenty of doctors (shockingly) have very little knowledge of it.

I’ve had OBGYN’s actually tell me they had painful periods too, and that I’d get over it. I’ve had OB’s treat me like I was a drug seeker, or a hypochondriac.

I had doctors say seemingly random other health crises couldn’t possibly connected, even though they happened during specific hormonal timelines.

Worst of all, I’ve had to explain the condition over and over to friends who have no idea what endometriosis is, and explain (mostly to justify to myself) why I’m not crazy, I am really sick- and I really do get sick all the time and have a ton of health issues and surgeries. It’s hard when you’re a “healthy” adult, but feel like you’re in your 90’s.

I have always suffered from some immune deficiency and a weak immune system- including bouts of colitis, cholecystitis (just had my gallbladder out in May), frequent rashes and hives, random infections, and flares of reactive arthritis.

While these are likely not caused by endo, they are certainly aggravated and worsened by it. Every time I suffer a flare up, I just so happen to be in a certain place in my monthly cycle. To say I am a slave to my hormones is an understatement!

I’ve tried every remedy my doctors and I could think of- hormonal birth control pills, depo provera, depo lupron, mirena, laparoscopies, the endometriosis diet, accupuncture, physical therapy, getting pregnant, metformin, clomid…. the list goes on.

Some worked for a while, some didn’t work at all, and some worked well but came with side effects (weight gain in excess of 60 pounds on an already un-skinny frame) that worsened other health issues, like poly cystic ovarian syndrome and horrible arthritis.

In short…. I’ve been suffering from chronic pain, often times interfering with my daily life, for a long time. In the last two years, the pain has become unbearable. In addition to the twice monthly pain I had normally endured (during ovulation and periods), my inflammation levels have skyrocketed as my endometriosis has grown- and I now have chronic pelvic pain in addition to severe arthritis pain in my ankles, knees and other joints. While my arthritis is likely not connected to my endo (it could be, but who knows), the high level of inflammation in my body, caused by endometriosis, has certainly made it much worse.

I’ve recently started to be in pain all month long, no matter where I am in my cycle and simple things like- ahem- going to the bathroom can sometimes be torturous.

Not to be crass, but my uterus has basically become an evil, bitter bitch that I am sick of. She’s no longer welcome to rule -and ruin- my life. And it’s time for her to pack her bags and go.

For someone who had significant hormonal imbalances, I had a surprisingly easy time getting pregnant and delivered two perfectly healthy babies when my husband and I decided we were done having children.

We didn’t want to go through another round of pre-eclampsia, and the constant arthritis and pelvic pain I’ve been having has made me weary to want another child.

My husband and I both come from a family with one other sibling, so having two children was kind of our ideas in the first place- but I’ve put off getting a hysterectomy in part so I could be one hundred and fifty percent sure, and also because having a long recovery-heavy surgery with very young children wasn’t exactly ideal.

We’re in a place now that with school, our parent’s availability to help with the kids for up to four to six weeks, and our own job situations it seems like a better time. But choosing a hysterectomy is still insanely complicated. And intense. 

Although there is a lot of information and support for women having hysterectomies (check out Hyster Sisters for more information than you’ll ever care to know), there aren’t a ton of people voicing what it is like for someone so far from menopause- and usually, women who undergo such a drastic surgery at this age are doing it to prevent the spread of cancer.

Since I am (as far as we know) cancer free, it’s a fairly uncommon decision to go through a radical hysterectomy (where they take pretty much everything- uterus, ovaries, cervix).

I’m told many more women in their thirties and even twenties are having hysterectomies early- many who have suffered from endometriosis and poly cystic ovarian syndrome, like myself- but it’s hard to not feel a bit alone when most of the people I’ve come across who have had this procedure are at least a decade older (which is not a big deal in the grand scheme of things- but hormonally, being 30 is so different than 40, 50 or 60).

Why I am Choosing Hysterectomy

I am tired of feeling like I am letting everyone down. As with anyone who goes through long bouts of pain, I feel like I am constantly letting people down. I don’t do much with my friends. I miss tons of events because I just don’t feel good. I don’t follow through with plans, and avoid even making plans because it’s easier to stay home. I know it doesn’t help me in the long run, and that I feel better when I do get out, but it is such a process (especially when the fulltime caretaker for two kids) that I just chose to skip.

I don’t want to stay in a vicious cycle of painkillers. I’m at the point that painkillers don’t fully help the pain- they just improve it. I don’t like taking painkillers, and i don’t like feeling groggy and loopy. I have tried a few times to get into one of the new medical trials for a painkiller specific to endometriosis, but had to opt out once, and then another medication I am taking regularly would have contradicted participation.

I want to be more involved with my kids. Running around after them, skiing again (I havent been in years- and I used to go all the time!), going on fun outings more- I want to feel better and be able to make all the memories my kids deserve.

And most of all- I just. Want. To. Be. Out. Of. Pain.

Living with chronic, uncontrollable pain is no way to live. It’s miserable, and I want so much more. I am hoping this surgery helps- and I know I might still face challenges and might have to do some further therapy to be fully healed- but I am ready to fight back.

Why I’m Completely Freaked Out

(This is a very raw, very rough stream of my actual hesitations and feelings at this point that I’m adding just because I haven’t seen many people talk about their fears. Most of them I know are completely irrational and overly emotional… but I think it would help me feel less “alone” to read someone else who is having these struggles internally, even though they sound crazy.) 

Kids. My husband and I have exactly zero desire to add additional children to our family. We love our two children who very much complete our sense of family.

However- there is a very real part of me, as small as it may be, that will always say “but are you REALLY done? You weren’t really ready for kids- are you really done?”. Which, yes, we are done. DONE. A hysterectomy just seems so much more final, as odd as that sounds- even though my husband already had a vasectomy. Not only will I be getting rid of the baby home- but all eggs as well. That’s the part that freaks me out a bit.

As odd a concern as this is- what happens to the eggs? Do they just go in the trash? Of course they do, that is what makes sense. It just seems weird, and emotional, and…. complicated.

Part of me thinks I should freeze them if we ever wanted a surrogate in the future, but I don’t see a scenario in which we would and that’s a silly extravagance when you know in your heart you don’t want another child. And if for some reason I really did want another child, I’d love to adopt and give a loving home to a child in need. It’s just impossible to drown the emotional attachment to my body’s role as a mother, as a giver of life.

Complications. All surgeries have a risk of complication- especially major surgeries. I have chosen to have robotic surgery (my OB is the head of the Da Vinci robotic surgery department at his hospital), which significantly reduces risks- but no surgery is without risk. Since endometriosis can’t be seen on an ultrasound or x-ray, it’s impossible to know exactly what the doctors will find- and as my uterus and ovaries look to be adhered together, there might be other issues with additional complications.

It isn’t outside the realm of possibility that my uterus and colon or bowel could be adhered as well- which brings about whole other sets of concerns. Since it is unknown, I am trying to not think of the “what ifs”, but it’s hard to not let my mind wander. Have you ever watched an injury lawyer commercial? I feel like the one asking for class action claims for robotic surgery are always on when I watch tv. Thanks lawyers, you aren’t helping.

Hormones. Often, when women have hysterectomies, they are close to or past menopause. I’m a good 20 years (or more) from menopause- and statistically, early hysterectomies mean earlier death. Hormone replacement does help this, but older methods of hormone replacement also carried a significant increase in heart attack.

I have already started bio identical pellet hormone replacement- which does not carry the same heart risks- but it is hard to look at the numbers of women who die early without estrogen. I plan to remain vigilant and stay on hormone replacement therapies, but it is hard to think I am not being selfish in wanting this when I could possibly be cheating my kids out of a long life with me.

On a less serious note- MENOPAUSE. I’ll be in menopause almost immediately after surgery. Since menopause is so wonderful and amazing, it sounds like nothing but a blast, right?

I’ve stocked up on chillows and cooling pads- and am thankful I chose surgery in winter so I can crack open the windows when I need. But really- I’m not looking forward to this:

I know it will be okay- and I trust my doctor and the hormone therapy I have chosen- but it’s just hard to feel at peace with anything but my own hormones. We did talk about saving the ovaries- but with aggressive pain ruled by hormones, it isnt a great choice for me.

I’d likely go through the surgery and still be in pain- so we’re going to have a delicate balance of having enough estrogen to protect my heart and bones- but little enough to not bring on more pain.

For all that is awesome about being a woman, sometimes having a uterus just plain sucks.

In the end, my husband (who has been phenomenal, especially in the last few months helping me with things I haven’t been able to do, supporting me through emotional over-reactions, and keeping a level head) and I decided that we think this surgery will be the best choice we could make for me- and for our family. It hasn’t been easy- but I am hopeful it works!

If you’ve had a hysterectomy, I’d love to hear from you (maybe save the scary stuff until next week?). If you’re stuck in pain from endometriosis- find a doctor who will listen.

Although we feel it is the right step to take, my doctor didn’t push me into this direction, and was ready to try other options. Finding a good doctor is more valuable than anything else- keep searching until you find one you trust. And if you have any specific questions, I’d love to hear them!

I might be slow responding to emails, fb and tweets for the next few weeks as I head in, and then recuperate- but I have lots of fun and delicious posts scheduled for the website.