This post contains frank symptom descriptions. If you’re squeamish or don’t want to know the details, don’t read on!
It must have been much scarier in times past, when recuperating after having major surgery.
You would worry if any unexpected, odd symptom was ‘normal’. You’d wonder if you should call the doctor, yet again.
At first, information sheets and pamphlets were produced to allay concerns, stop the flood of calls and visits for non-problems.
But now, there’s the internet.
Of course, there is a lot of misinformation and complete garbage ‘medical’ advice on the net.
A pinch (or handful) of common sense is necessary.
But then again, you still need common sense when doctors give you advice.
I spent 10+ years with doctors and surgeons saying the endometriosis/adenomyosis symptoms and pain were all imaginary.
My common sense said they were wrong, so I kept hunting for more knowledgeable doctors.
Demystifying a hysterectomy
I’m very grateful to the forums over at HysterSisters - almost every question I’ve had in the lead up to my operation and during my recovery has been asked and answered already.
The accounts of women, just like me, struggling with the same issues have helped keep (most) of my worrying, and my partner’s panic in check.
Extreme cramps, a host of bladder and bowel issues, prolapse concerns, intermittent slight fever, severe headaches, dreadful breast tenderness, odd bleeding from the second week - all of these worries have been chased away by searches through the forum.
The questions that I haven’t found answers to:
- Why is my neck still so stiff and sore from the central venous catheter?
- Will I be granted an Anschlussbehandlung (rehabilitation program)? Especially as I haven't yet earned enough to be required to pay into the federal retirement program funding the rehab program.
- What are the withdrawal symptoms of Visanne (dienogest)?
Symptoms after my hysterectomy
Actual symptoms I’ve had since the operation include:
- bowel - anal prolapse (this seems to always happen after colonoscopies to me now), extreme cramping with wind/bowel movements (as bad as before the hysterectomy). Difficulty voiding due to pain in cuts/lack of muscle control, Lactulose helps. But no bleeding yet!
- bladder - pain and cramping on urination, urgency yet difficulty relaxing enough. Thankfully no UTI (perfectly clear and light coloured), so I chalked this up to inflammation. Ibuprofen helps, but the pain returns when I stop taking it. Kegel pelvic muscle exercises have also helped.
- stomach - nausea and my first ever bout of heart burn (perhaps due to the Lactulose)
- bleeding - light pink mucous to start with, now brown. Apparently this is a common symptom to appear at week 2 after a vaginal total hysterectomy (removed cervix), as the stitches around the vaginal cuff start to loosen and dissolve.
- skin - first severe peeling, then bumps a little like an allergy. I put this down to stopping Visanne (my acne has almost gone!) and actually being allergic to some of the sticky tapes used.
- breasts - ballooning, extreme pain in the nipples. Probably also due to stopping Visanne (estrogen dominance returning, as I kept my ovaries).
- plus other random things like bloating, weight fluctuations, pulled stitches, leg cramps, mild fevers, pain when anything puts pressure on my abdomen (like wearing trousers).
Of course, other fibro symptoms have popped up - sciatica is worse for sitting/resting a lot, costochondritis is worse from the gas in the abdomen, side sleeping, and having arms in front of me too much.
Headaches, neck and jaw pain are worse from the lack of physio treatments for my dodgy C2. The supporting muscles were probably further aggravated by the central venous catheter.
A normal recovery
I’ve reassured myself with the range of ‘normal’ recovery times (3-8 weeks) over at the forum, and through friends who’ve had similar procedures.
At almost 3 weeks, I’m not yet very mobile (10 minutes gentle walking is my limit), and can’t sleep in my preferred position on my belly. But I can wander around the house, shower, grab a snack, spend some time at the piano, and play footsies with the cats with some ease.
Cooking a full meal or baking is not doable in one hit, although I suspect my problems with gripping a knife, or opening bottles and jars, is due to my old fibromyalgia/nerve problems being opportunistic.
I have to switch up activities - don’t sketch, game or type for too long (keyboard in lap is very poor ergonomics), spend only a short time on the piano or stitching every few days, stand up and stretch gently throughout the day. It’s easy to remember to get up and move regularly when dealing with an irritated bladder!
Of course, some days are better than others. If I overdo it, my body reacts obviously - the spotting, fatigue and pain all increase for a day or so.
But on the whole, and compared with my previous five (much simpler) endometriosis laparoscopies, I am recovering very well from the hysterectomy.
Pressure to recover
Why then, do I let skepticism and pressure from family members upset me? Habit perhaps?
These same people have called me a hypochondriac, doubted my pain, disbelieve the diagnoses of specialists. Their ‘belief’ that I should be back at work, completely healed and mobile, should be the least trusted.
Yet, I let them make me angry and upset.
Common sense tells me a little more distance may be necessary.
Anger is not good for recovery.
Neither is sneezing!