April 5th marks one and a half years or 18 months post op from my hysterectomy. And I felt it was a good time to do an in-depth status and update again. So many people find my blog specifically because of the healing progress entries I wrote. I’ve received many comments and emails thanking me for the information they provide. It feels good to be able to give something back and help other women who have gone through, or who are currently going through this too.
This entry is likely to get very long and possibly TMI in things that other people who are NOT recovering from surgery might not want to know about, so I’m going to put the updates and specifics behind a cut. Casual readers of the blog are welcomed to skip this entry if they want since it’s all going to discuss surgery, medical issues, recovery and healing timeline.
I’m going to try and break this down into specific categories so that you can read all or only the ones that you’re curious about. I’m going to try and address as many things as I can think of and how I feel now that I’m 18 months post-op. It’s my hope some of this can help be a comparison to your own timeline and you can perhaps get an idea of how it went for someone else and maybe even feel less alone through this process.
Note: This is my own personal experience only. Information given is NOT intended to be or replace medical advice. Please consult your doctor(s) and/or surgeon for specific issues you might have. Thank you.
My surgery
I had a Total Laparoscopic Hysterectomy (TLH) at age 34 on October 5, 2011 but I kept both functioning ovaries. My uterus and cervix were removed during the surgery. The reason for my surgery was nearly 3lbs (yes three pounds) of tumors inside my uterus as well as attached to the outside of the uterus.
Hormones
Since I kept my ovaries, I didn’t need to take any hormones. I still technically ovulate each month, though of course, I have no more periods. I also of course don’t have any cramps or anything (no uterus to cramp!) and I don’t experience any crazy range of PMS symptoms. I also don’t have any menopausal symptoms. It’s really the most amazing part of all of this is how normal and even I feel all the time. I never have to worry about the debilitating pain I used to have during my cycles. Every few months, I may feel a little pain in the area of an ovary but that’s about the only indication of ovulation at all. It’s really amazing.
Energy
I have so much more energy and stamina now that I’m healed. During the year of healing, I was definitely much weaker and much easier to tire then I was before surgery. The healing process really does take a long, long time and that full year was really needed for me to feel normal again. The good thing is that I actually feel better than normal these days. I think that eliminating not only the 3lbs of tumors in my uterus but also the pain and stress my body endured every month for my periods was really taxing me so much more then I realized. It’s only now that I’m healed and healthy that I really FEEL healthy. I just feel like I can do more then I could before; even stupid things like being able to carry more groceries up the 3 flights to my apartment without being crushingly exhausted like before surgery. It’s not that I’m Superwoman or anything, just that I never realized how much the chronic fatigue was tied up in my horrendous monthly cycles.
Acne
Unfortunately, the only downside is that I never knew how much my birth control pill was managing my acne! I had been on the pill for so many years without break in order to try and manage and regulate my periods. (Without being on the pill, they were so extreme, I wound up more then once in the ER as a result of blood loss.) So now that I’m no longer on birth control, I have a lot of problems with acne on my back and chest. Not so much on my face, but it’s been a struggle to keep it under control on my back. If this is the worst side effect of having had my surgery though, it’s a minor aggravation and one I’d still gladly take for all the positives I’ve gotten in exchange!
Migraines
Another amazing thing is that my migraines are almost completely gone after my hysterectomy. I used to get 3-4 days every month at the start of my period of a non-stop migraine. I also used to get very intense “aura” symptoms with my migraines like extreme light and sound sensitivity and visual distortions. Now, when I do get a migraine, it’s usually once every couple of months. I’ll have what is a “low grade” migraine where it can actually take me awhile to realize the ache in my head is actually a migraine. It builds much more slowly. They tend to linger for 2-3 days BUT, it’s a much more mild version of what I had before. It doesn’t impair me anywhere near as much as it used to and it never feels like a “full blown” attack like before. This too is an amazing perk of my surgery and has added to my overall quality of life and how much better I just generally feel these days on a daily basis.
Belly Button (Navel)
I had a lot of sensitivity in my belly button from my laparoscopic incision there for more than a year following my surgery. The RN at my gyno’s office said it happens to a lot of people (though not all) because of the need for nerves to reconnect and reattach at that location after being severed for the incision. She said that for most people, the “creepy, crawly” or “tingling” or just general “irritated” and “sensitive” feelings tend to wane and eventually go away completely. Some never really experience it. And for some, it never fully goes away.
Mine has gotten better, but it’s not entirely gone. It was probably about month 13 or 14 that it started being less of a constant thing and more of an intermittent thing. I spoke with one woman who said it was two years before it went away for her, so *fingers crossed* mine too will eventually go away completely. I can wear just about any pants these days for a least the length of a day, but still, sometimes, if I wear something that presses in just the right way for a long period of time, it drives me crazy. And sometimes, it still just kinda aches a little. Not to be TMI (but this whole entry is a bit TMI!), but I find sometimes it’s worse after a BM. Something about the “pushing” can sometimes make it more aggravated. It’s not pain per se, just kind of an uncomfortable feeling both in and slightly below my navel. In those times I find myself rubbing it a little to help sooth the annoyance.
Weight Gain / Swelly Belly
I had swelly belly for months and months after surgery. It was probably a good 8 months or more of my stomach being “rounder” then it seemed like it should be. Around a year, it got a lot better and I felt like it was back to being more flat like it should be. (I’m 5’6″ and approximately 122lbs) But, in the 14-18 month range, I’ve noticed I seem like it once again is more swelly and rounded then it should be. It kinda bothers and disgusts me honestly. I feel “fat” even though weighing myself, I’m probably only about 3 or 4lbs over where I’d like to be. (I like to stay no more then 120lbs and I’m fluxing between 122-125ish right now.) Sometimes, my stomach is nice and flat and normal. But sometimes, I feel like it’s very puffy. It frustrates me that it got better but now it’s getting bad again. I almost kinda feel like when you get a female cat fixed, she gets a little flabby belly. It’s unattractive to me and an issue I’m struggling with currently. I’m sure to most people, I look fine and they would think I was being weirdly obsessive. In clothes, I also don’t feel like it’s as noticeable. But when I look at myself in the mirror, I am often disgusted by the weird and exaggerated roundness of my stomach. I’m thinking I want to try and start a workout routine focusing on my core, in the hopes of strengthening my abdomen more in hopes of some of it going away. This is one issue that does bother me a lot right now.
Abdominal Strength
Related to the topic above about “swelly belly” I would further expand a little to say that despite the fact overall I feel I have more energy and more strength, I do feel in a lot of ways that I’m still less strong in the abdomen then I was before the surgery. Taking a year of healing and the restrictions on moving/bending/lifting that came with it, I feel like I’ve gotten a little softer and weaker in those muscles specifically. Again, possible TMI, but even sometimes the “bearing down” action of a BM can make me feel like I’m weaker in the core muscles then I used to be.
Related: My #1 Post-Surgery Bathroom Tip Roll up a towel to make a “barrel” or “jelly roll” shape and set it on your lap against your stomach during a BM to help “hold” your stomach. I found it was the absolute most invaluable thing I did to counter that week, hollow feeling and difficulty when trying to use the bathroom post-op.
Hollow Feeling / Feeling Like Your Guts are Going to Slide Out
All of that is long gone. I felt very hollow for awhile while I was recovering. It felt like there was a big, gaping void in my abdomen. But it was just the change of position in how your organs settle a little differently. You get used to it and don’t feel it anymore. (Because you’re not really hollow at all; it’s just a trick of the brain. Promise!)
And, I also felt like my organs were going to slide right out of me if I didn’t hold them in after the surgery. It’s a result of the surgery itself and again of the positional changes. It goes away too. That weird, creepy, slippery sensation doesn’t last.
Incision Sites / Scars
My incisions sites don’t hurt at all anymore. I would still get the occasional ache deep down by the one on the left (my largest) up until about a year or so. I honestly can’t remember though the last time I had any aches though from them. I know the internal healing takes a full year though so I think that was pretty spot on in my experience.
My scars are looking smaller and lighter and better than ever these days. My largest on my left has lost the purple color it had for the first year. It’s now the slightly-paler-then-skintone color of an older scar. The same goes for my belly button. The others are so tiny they’re pretty much entirely gone. I’m really impressed at how nicely they healed up and how you’d really not notice them at all unless you were really looking.
Life In General
Is good. In fact, it’s so much better now then I ever thought it would be. It was such a long, hard process. From the diagnosis in the ER in May 2011, to four months of Lupron (inducing a medical menopause which thankfully was temporary!), to surgery to recovery – it was hard. Way harder then I thought it was going to be. It was more painful then I expected. So many women said they were up and back to their lives in a week or two. Ha! No, that’s just not true. And when I really stopped and talked to other women who were going through it with me at the same time, as well as those who had gone through it, I realized it really IS that difficult. It really IS that painful. If you’re going through it, don’t for a minute think less of yourself for needing your pain meds or for needing help or for it taking a seriously long time to heal. It truly does take a full year to get back to “normal” and in some ways, it can be even longer! Do not take it as a sign of weakness on your part that it’s hard. Recognize that it’s major surgery and you only get one chance to heal properly. Follow your doctor and/or surgeon’s information, don’t hesitate to ask questions if you’re unsure about something, listen to your body and give yourself the space and time needed to heal. The time goes by both slow but also fast and before you know it, you’ll be feeling so much better.
I hope this helps other women healing from hysterectomy and that it inspires them to know it gets so much better! Whatever your reason for the surgery, you CAN be healthy and happy again after.
I’ve been following you since the CNN story. I am just thrilled to see the great update. I am really happy for you!!!
Thank you so much! I’m very happy to be doing so well these days now too. 🙂