I can’t think of any other good title for this post. I’m kind of surprised I’m writing it at all. Honestly, I’ve never really been a private person, so I figure if I have to get my uterus yanked before I’m even 40, I should at least use the experience as writing inspiration. So why am I getting a partial hysterectomy so young? Well, long story short, I’ve been having horrible pain for two years now and it turns out there’s a giant fibroid hanging out on my uterus. That’s the short story. Here’s the longer version.
Mystery Pain and Missed Periods, Oh My!
It all started in February of 2012. I ended up in the ER with horrible pain in my lower left side. My period was late for the first time since 2004 but all the tests said I wasn’t pregnant. I started to worry that maybe it was an ectopic pregnancy. After several not-so-fun tests, the doctor told me that it was a cyst on my ovary. Over the next couple of months, those painful cysts came and went. I had a laparoscopy and they found small fibroids on my uterus. The doctor also said my uterus was “enlarged,” and mentioned ademyosis. Later, she said that wasn’t a big deal.
Months later, I was back in the ER for pain, then back in the OR for another lap with a different ob/gyn. This one was right before Hurricane Sandy. I was recovering during those 8 days without power, which could account for part of the reason I went a little ’round the bend, so to speak. During that trip into my abdomen, my doctor found some cysts but said she couldn’t find anything that could be causing this much pain. Meanwhile, my cycles were a mess, one doctor told me I was in early menopause, the other said it was all normal and I was just miserable. At the same time, I was thinking that maybe I was totally insane or something. Could it have been in my head? Was I becoming a hypochondriac?
It is NOT in my head!
Last week, on February 21st, I was back in the ER again because I felt like someone was trying to rip my uterus out. After several tests, the ER doc said he couldn’t “visualize” my left ovary. He was concerned about a twisted ovary. He passed me off to the on-call GYN, who offered me two choices: she could do surgery to see if anything was wrong and fix it or she could admit me to wait and see. I asked for the surgery. I wanted the pain to end. She over-ruled my “choice” and admitted me instead. For the next 12 hours, nurses gave me some pain meds and loaded my full of antibiotics that I didn’t need. No doctors came to see me. I begged to see one and finally I got another on-call doctor. She told me there was nothing wrong with me, that I should keep track of my pain for a month and write it down. Then I should see someone.
I cried hysterically. I was still in the same amount of pain and she was telling me to go home, take a Tylenol and log my pain. I ended up calling a “Condition H,” something that Pocono Medical Center has when a patient feels they are not being treated well. In the end, I was told I could spend the night and go home in the morning or go home then. Nothing else would be done for me. No additional tests were done to see if my ovary was okay. If it was a twisted ovary, it would have been dead by that time and I would have been on my way to sepsis. Thankfully, it wasn’t.
After going home and taking the T3s the doctor finally gave me, I waited until Monday morning and called the OB/GYN office again. I got an appointment with a different doctor. One who I had heard does wonders with pain. He got me in this past Friday. I walked in and he looked at me, asked if I wanted more kids. I said no. He said “you want a hysterectomy?” I asked if I needed one and he said yes.
Finally, an answer!
All this time, the pain that I thought was coming from ovarian cysts was actually coming from the ginormous fibroid on my uterus. It’s about the size of a tall doctor’s fist (he said it was “this” big while holding up his fist). He told me I could torture myself for the next 12 years or just lose the uterus. I can keep my ovaries. The doctor said this fibroid could have been growing for years. What I want to know is, if it’s been there all this time, how did NO ONE see it? Two trips into my abdomen, at least half a dozen ultrasounds and three CT scans. No one saw it. No one but a man who looked at my latest tests once. Thank goodness for him. I came home and looked up the symptoms of fibroids. I have all except constipation.
So my surgery is scheduled for the first week of May. It takes a while to get my insurance to approve it since I’m still considered young. I have two months to prepare to say goodbye to my uterus. It’s funny, I wasn’t planning on having more kids, but knowing that you absolutely can’t makes it harder somehow.
What would you do if you were me? Am I doing the right thing by getting rid of my uterus? I honestly want to hear your opinion, I’m so conflicted about the whole thing.
I would. I would have gotten gutted after I had my last baby if I could have. I had my tubes tied, but I would have loved to get rid of the monthly misery.
Getting rid of the monthly misery is definitely one of the major pros of all of this, especially since it’s gotten so much worse in the last two years.
from people I hear about this from who have had their uterus out they say they feel a ton better and no more periods it also means no more giving birth. I would be all for it if it was me
It’s good to know that others say they felt better after the surgery. I have this fear that I’ll have an entire body part removed and still not feel better.
Wishing you the very best of luck. I had my hysterectomy in November 2012. If you are interested you can read my initial experience post-op at http://ericabuteau.com/2012/11/30/hysterec-to-a-new-me-my-personal-account/ and six months later http://ericabuteau.com/2013/05/23/hysterectomy-recovery/
Personally, I’d do it all over again if I had to! But I really wonder if keeping my ovaries was a blessing!
Thank you for sharing those, Erica, I’m definitely going to read them now. It’s reassuring to read other’s stories and see how they got through it.
I would definitely have the surgery. I hope that it makes you feel so much better!
As a male I’m 100% sure I don’t have an appropriate comment to make. So…I’ll just say…best of luck on your journey!
Thanks so much, Scott! That’s a perfectly appropriate comment!
Good luck in whatever you decide. Honestly, if you’re in pain, I would probably do it.
If it will help your pain, do it! All you can do is make the best choice with the information you’re given. Good luck with your surgery!
I would do what you’re doing, no question. My mom recently went through something a bit similar (at 74) with no one taking her seriously – it wound up so much worse than it had to be. Good for you for advocating for yourself and finding a good doctor.
Thank you for the reassurance! It is so horrible when you know you’re in pain and doctors look at you like you’re crazy. I hope your mom was okay in the end!
I think if by getting rid of your uterus, you are fixing the problem, then of course it needs to be done. You said you are done having kids, but the option wont be there anymore, and I know that probably is hurting you inside. BUT if taking your uterus out will make you feel better, I say go for it! Good Luck with your surgery!
Thank you! Logically, I know it’s the best decision. I think I just need to let it sink it emotionally too.
I have a tiny fibroid that they doctor is watching too. I hope that your surgery goes well and that you heal quickly from everything.
Ugh, good luck with your fibroid! I hope it stays tiny. I don’ really understand how mine grew so fast. No one mentioned it being huge when I had tests done less than two years ago.
I would definitely have it removed. I hope the surgery goes well.
Thank you. Just thank you for writing this. Not only did you not let doctors tell you there was nothing wrong, you didn’t give up. I dislike doctors for this reason, honestly I do. You didn’t give up and you kept demanding to see someone, most people give up. I’m sorry that you’ve been in so much pain, but I am glad there’s an answer, and it will become better for you. I look forward to hearing about you once you start your road to recovery! I bet this is a slight relief for you, finding out, knowing there’s something to be done.
Given the information presented here, I would do the same thing you are doing and never look back and worry about if I made the right choice.
You could always get a second opinion but my “gut” tells me this doc knows what he is talking about. Here is to a pain free future for you.
Sometimes you just have to do what is best for you and I know the pain can be bad at times. I have endometriosis and it’s terrible. I wish you all the best with your surgery.
It’s so frustrating when you know something’s going on but you’re told it’s nothing. I’ve heard a lot of stories like that too! I’m glad you found your answer, and I wish you well.
I am so sorry for what you have been going through and I can unfortunately relate. I can not get anyone to listen to me, not even my husband who sees how much pain I am in. I am actually jealous that you are getting yours removed, after we have kids and we know we are done – do we really need to keep them. They seem to cause more harm than good once we hit a certain age.
I actually had a small fibroid right before I was trying to conceive. It does change your period but I didn’t have that much pain. Glad you got everything figured out!
You are very brave for writing about this. I bet there are thousands of women who will go online and see this. Thanks:)
I am sure that there are a lot of women that are grateful for your honesty and knowledge on this subject. Thanks for the info!
I had to have a hysterectomy in 2007. I had dreamed of having one more child or two, but fate wouldn’t permit. They were concerned I had cancer so out everything had to come. it’s a bitter pill to take when something is being done to and with your body that isn’t your choice. I will spare you the recovery story.
I would probably make the same decision as you. You need to take care of your body. I am praying that I don’t need to have a hysterectomy until later in life -but I know many of my family members who have had them done in their 30s.
My mom had one when a tumor was present. Its a tough decision to make but to save a life, you need to do what you need to do.
I’m so sorry to read about the fibroid… Have you considered alternative medicines to get another look at them? Sending healing light your way.
Wow. I’m glad they finally diagnosed you and they have a solution. I’m sure it’s not going to be the easiest thing in the world to let go of something that’s been a part of you for so long…and has helped grow your family! We’ve been trying for a baby for 7 months now with no luck. I would be devastated if they told me now that I needed to have this surgery…
I hope everything goes well – not easy to have such struggle but I am sure everything will be fine. Believe.
Wow this sounds super scary because I was recently told that I too have a cyst in my right uterus but they also said it looked to be a small one and now I’m waiting to go in for more test. I get really bad cramps during ovulation that feels like giving birth so I really want to be sure that the cyst is not something that will eventually send me rushing to the ER. Hope the surgery goes well.
The cysts come and go, and they’re actually pretty common. Sometimes they cause pain, sometimes they don’t. Get the tests though to be sure. It’ll be okay! Thank you for your thoughts!
Kissed mine goodbye at 29. Was given the green light at age 25 to have it out but had 4 little kids to care for so waited as long as I could to lessen the post op burden. Best thing I ever did. Went from 7-10 days of life altering pain every month to….nothing! No pain. No rocking in the dark in a bedroom while my family enjoys the day. No regrets!
I definitely do not miss the rocking in the dark begging for the cramps to end!!