Life After Adenomyosis – 2nd Hysterversary!

Wow how time flies! It’s been 2 years since I said goodbye to evicted my uterus. Sometimes it feels kinda weird that I’m only 27 and am already 2 years post hysterectomy + prophylactic salpingectomy (uterus/cervix+tubes, I kept both ovaries), but I’m happy to say that I have no regrets. If I knew then what I know right now, I would make the same decision. It’s a life changing surgery – and definitely not one I’d have done unless my uterus itself had something wrong with it – but life sans angry, dysfunctional adeno uterus is pretty great.
So, how did I get here? Well ….

THE SYMPTOMS:
Labor-like Uterine Contractions
Blood Clots
Burning Bowling Ball Mid-line Centered Pelvic Pain
Back Pain
Pain with Sex
Pain with Orgasm
Full Bladder Set off Uterine Contractions
Pain Radiating Down Inner Thighs
Bowel Pressure

NUMBER OF PHYSICIAN OPINIONS OBTAINED PRIOR TO SURGERY:
3

UNANIMOUS PROFESSIONAL OPINION / INDICATION FOR SURGERY:
Adenomyosis

DATE OF SURGERY:
December 30, 2014

AGE AT TIME OF SURGERY:
25

THE SURGERY:
*Total Laparoscopic Hysterectomy (uterus/cervix removed)
*Prophylactic Bilateral Salpingectomy (tubes removed as cancer prevention)
*Lysis of Adhesions (minor scar tissue removed)
*Cystoscopy (bladder checked out – normal yay!)
*Right Ovarian Cystectomy (ovarian cyst removed from right ovary – pathology confirmed it to be a normal, cyclical functional cyst – nothing to be concerned about – woo hoo!)

POST OP DIAGNOSES:
Adenomyosis
Adhesions
Right Functional Ovarian Cyst

The best part? Absolutely NO endometriosis found anywhere which means that the specialist excision for my endo back in 2010 – which enabled me to conceive my daughter – had been overwhelmingly successful in getting rid of my endo while preserving my organs. Today, my ovaries continue to chug right along and I remain endo symptom free. I’ll mark 7 years free of the stabbing/throbbing/knife in pelvis “endo life” in June 2017.

THE RECOVERY:
Ughhhhhhhhhhhhhhhhhhhhh. No, really, it was pretty rough but I survived. From a physical standpoint, I felt like death warmed over for around 12 days before rounding a corner and declaring that I was “probably going to make it”. After that, each day was slightly better than the previous day. By 6 weeks, I was back to nearly all daily activities and, at 8 weeks, my surgeon removed the last of my recovery restrictions. I was hit (by what felt like a freight train) with a lot of emotional recovery stuff that I wasn’t expecting. We have one child who was 2 at the time and we were done in the reproduction department. 11 months earlier, we had permanently closed the door on more children when my husband had a vasectomy. I was terrified of becoming pregnant again – because of the complications I had with my one and only pregnancy – and also because we realllllllllllllyyyyyyyyyyyyyyyyyyy just didn’t want more kids. Imagine my shock to find myself squalling over loss of fertility. Hormonal roller coaster from hell that thankfully smoothed itself out when my ovaries shook off the shock and went back to work. Hysterectomy recovery in a word? Survival.

THE FIRST YEAR:
My first year saw me adjusting to life with no periods. For me, that meant getting rid of an impressive collection of “supplies” and developing an obnoxious snicker that comes out every time I see the tampon aisle in the grocery store. I eventually quit expecting my period with bathroom trips and I’ve concluded it’s not coming – even if my period tracker app thinks I’ve been “missing” it. I haven’t. I bought new panties and new pants, and I no longer worry about waking up covered in blood or bleeding through in public. My first year also saw me making 13 weekly treks for pelvic physical therapy (highly recommend) for a mild case of pelvic floor muscle dysfunction (diagnosed pre-operatively). My nearest in-network pelvic floor physical therapist is hours away in another state so that made for some fun adventures with the hubs. The strength of my pelvis improved with the PT and my marriage got stronger from the “kid free” hours the hubs and I spent driving back and forth.

YEAR 2:
Year 2 has seen me have some bittersweet moments as my now 4 year old has noticed that she doesn’t have a brother or sister like her friends do. This has resulted in her routinely asking for a sister which tugs at my heart strings (although, logically speaking, I know she wouldn’t have gotten a sister anyway – hyster or no – because we had no plans for more children). I think it’s because before I was making a choice not to have more kids, and now it’s not up to me – and that’s taken some time for my type A personality to get used to.
It occasionally sinks in that, unless the hubs had his vasectomy reversed, we did egg retrieval and got a surrogate (all things that are not only not desired, but that are also financially out of reach), there’s absolutely no chance of ever having another child. 99.999999999% of the time, that’s perfectly completely wonderfully fine.  Honestly, I find my feelings on surgical sterility rather ironic really for someone who used to worry about getting pregnant and took great steps to avoid it.

I’ve also checked off another annual exam + a smear (yes, you read that correctly – hysterectomy doesn’t automatically mean the end of smears – discuss with your doctor about your case). My gynecology care plan as it stands is for a pelvic + breast exam yearly, and a smear every 3 years. At the recommendation of my gynecologist, I’m also starting some vitamin E capsules daily in an effort to reduce the discomfort from fibrocystic breasts. My primary care doc discovered the breast issue awhile back (but had no suggestions), so I’m glad that I discussed it with my gyn. The breast soreness comes and goes throughout my “cycle” (still have both ovaries) and I’m just about tired of it. I’m hoping for some relief from these super sore boobs! My well woman exam this year was on 12/20, and my doctor noted that I was likely about to have what would have been my period. I was not at all distressed to realize for the 171524th time that, were it not for boob changes, crankiness, and an increased consumption of chocolate, I’d have no idea where I am in my cycle. With my endo long since expertly excised/gone and my “soft, boggy, angry, obvious source of pain” adenomyosis uterus kicked to the curb, my “cycles” remain completely free of pelvic pain! Carry on, ovaries, carry on. I’m still dealing with some vaginal dryness that started a little over a year ago (side effect of surgery in my case blah) which is annoying but I’ll take the trade off.

Overall, 2 years out, I’ve very well adjusted to life post hysterectomy and I’m thrilled to say that I don’t miss my not-so-dearly-departed uterus at all – I’ve found that I am a much healthier and happier woman without it.
Adenomyosis – 0
Me – 1
Year 3 here I come!

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About ducksinarow55

Wife. Mommy. Endometriosis/Adenomyosis/Bell's Palsy warrior. Advocate for advanced excision surgery as the gold standard treatment for endometriosis. My posts will include my personal journey with both endometriosis and adenomyosis, as well as links to resources by reputable endometriosis/adenomyosis sites (ie. Endometriosis Research Center, World Endometriosis Research Foundation, etc). Follow me on twitter - twitter.com/rlgibson
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