Why we're Choosing to have a Hysterectomy at 32
This isn't a normal recipe/craft/etc post that we love to share on Avdaye- its a bit, um, personal. If you're not comfortable with basic medical terms and the names of female anatomy, this post 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. We're putting this out there in case there is someone else who has gone through what we're going through right now and is comforted by the realization they aren't alone.
We've been suffering from Endometriosis since shortly after our 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, our heart goes out to you.
Our Endometriosis Journey & Backstory
We've never talked about our endometriosis journey here, but let's say it has been a long, painful and often hopeless trial. Endometriosis is not only painful (and sometimes life-altering), but a isolating condition.
Many people have never heard of endometriosis- and plenty of doctors (shockingly) have little knowledge of it.
We've had OBGYN's actually tell us they had painful periods too, and that we'd get over it. We've had OB's treat us like we were a drug seeker, or a hypochondriac.
We had doctors say seemingly random other health crises couldn't possibly connected, even though they happened during specific hormonal timelines.
Worst of all, we'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 we're not crazy, we are sick- and we 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.
We have always suffered from some immune deficiency and a weak immune system- including bouts of colitis, cholecystitis (had our 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 we suffer a flare up, we so happen to be in a certain place in our monthly cycle. To say we are a slave to our hormones is an understatement!
We've tried every remedy our doctors and we 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…. We've been suffering from chronic pain, often times interfering with our daily life, for a long time. In the last two years, the pain has become unbearable. In addition to the twice monthly pain we had normally endured (during ovulation and periods), our inflammation levels have skyrocketed as our endometriosis has grown- and we now have chronic pelvic pain in addition to severe arthritis pain in our ankles, knees and other joints. While our arthritis is likely not connected to our endo (it could be, but who knows), the high level of inflammation in our body, caused by endometriosis, has certainly made it much worse.
We've recently started to be in pain all month long, no matter where we are in our cycle and simple things like- ahem- going to the bathroom can sometimes be torturous.
Not to be crass, but our uterus has basically become an evil, bitter bitch that we are sick of. She's no longer welcome to rule -and ruin- our life. And it's time for her to pack her bags and go.
For someone who had significant hormonal imbalances, we had a surprisingly easy time getting pregnant and delivered two perfectly healthy babies when our husband and we 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 we've been having has made us weary to want another child.
Our husband and we both come from a family with one other sibling, so having two children was kind of our ideas in the first place- but we've put off getting a hysterectomy in part so we could be one hundred and fifty percent sure, and also because having a long recovery-heavy surgery with 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 we are (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).
We're 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 we'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 we are Choosing Hysterectomy
We are tired of feeling like we are letting everyone down. As with anyone who goes through long bouts of pain, we feel like we are constantly letting people down. We don't do much with our friends. We miss tons of events because we don't feel good. We don't follow through with plans, and avoid even making plans because it's easier to stay home. We know it doesn't help us in the long run, and that we feel better when we do get out, but it is such a process (especially when the fulltime caretaker for two kids) that we chose to skip.
We don't want to stay in a vicious cycle of painkillers. We're at the point that painkillers don't fully help the pain- they improve it. We don't like taking painkillers, and i don't like feeling groggy and loopy. We 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 we are taking regularly would have contradicted participation.
We want to be more involved with our kids. Running around after them, skiing again (we havent been in years- and we used to go all the time!), going on fun outings more- we want to feel better and be able to make all the memories our kids deserve.
And most of all- we just. Want. To. Be. Out. Of. Pain.
Living with chronic, uncontrollable pain is no way to live. It's miserable, and we want so much more. We are hoping this surgery helps- and we know we might still face challenges and might have to do some further therapy to be fully healed- but we are ready to fight back.
Why we're Completely Freaked Out
(This is a raw, rough stream of our actual hesitations and feelings at this point that we're adding because we haven't seen many people talk about their fears. Most of them we know are completely irrational and overly emotional… but we think it would help us feel less “alone” to read someone else who is having these struggles internally, even though they sound crazy.)
Kids. Our husband and we have exactly zero desire to add additional children to our family. We love our two children who much complete our sense of family.
However- there is a real part of us, as small as it may be, that will always say “but are you done? You weren't really ready for kids- are you really done?”. Which, yes, we are done. DONE. A hysterectomy seems so much more final, as odd as that sounds- even though our husband already had a vasectomy. Not only will we be getting rid of the baby home- but all eggs as well. That's the part that freaks us out a bit.
As odd a concern as this is- what happens to the eggs? Do they go in the trash? Of course they do, that is what makes sense. It seems weird, and emotional, and…. complicated.
Part of us thinks we should freeze them if we ever wanted a surrogate in the future, but we 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 we did want another child, we'd love to adopt and give a loving home to a child in need. It's impossible to drown the emotional attachment to our body's role as a mother, as a giver of life.
Complications. All surgeries have a risk of complication- especially major surgeries. We have chosen to have robotic surgery (our 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 our 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 our uterus and colon or bowel could be adhered as well- which brings about whole other sets of concerns. Since it is unknown, we are trying to not think of the “what ifs”, but it's hard to not let our mind wander. Have you ever watched an injury lawyer commercial? We feel like the one asking for class action claims for robotic surgery are always on when we watch tv. Thanks lawyers, you aren't helping.
Hormones. Often, when women have hysterectomies, they are close to or past menopause. We're 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.
We 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. We plan to remain vigilant and stay on hormone replacement therapies, but it is hard to think we are not being selfish in wanting this when we could possibly be cheating our kids out of a long life with us.
On a less serious note- MENOPAUSE. We'll be in menopause almost immediately after surgery. Since menopause is so wonderful and good, it sounds like nothing but a blast, right?
We've stocked up on chillows and cooling pads- and am thankful we chose surgery in winter so we can crack open the windows when we need. But really- we're not looking forward to this:
We know it will be okay- and we trust our doctor and the hormone therapy we have chosen- but it's hard to feel at peace with anything but our own hormones. We did talk about saving the ovaries- but with aggressive pain ruled by hormones, it isnt a great choice for us.
We'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 our 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 plain sucks.
In the end, our husband (who has been phenomenal, especially in the last few months helping us with things we haven't been able to do, supporting us through emotional over-reactions, and keeping a level head) and we decided that we think this surgery will be the best choice we could make for us- and for our family. It hasn't been easy- but we are hopeful it works!
If you've had a hysterectomy, we'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, our doctor didn't push us 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, we'd love to hear them!
We might be slow responding to emails, fb and tweets for the next few weeks as we head in, and then recuperate- but we have lots of fun and good posts scheduled for the website.
