'M.E. myself and I' by Anna Redshaw

Long story short, it’s all gone swimmingly. Surgery went well, the anaesthesia was okay, and there have been no complications whatsoever. The surgery hasn’t triggered an immediate relapse. Alas, I am not counting my chickens, will be being careful for these first six months, and will see how the year plays out.

There’s a lot going on for me and my body. Recovering from the anaesthesia and the trauma of an operation, surgical menopause (menopause induced by the removal of the ovaries), adjusting to Hormone Replacement Therapy, and the good old M.E. Fatigue, on fatigue, on fatigue. I am Unwell, but at the same time I’m doing really well…

Physically I’m doing well for me, but mentally and emotionally I don’t feel like myself yet. Just a bit ‘off’. I know from speaking to others that that’s normal and okay, and that it may stick around for awhile.

Although it has been very challenging, fourteen years of M.E. at the level of severity I have become used to, prepared me incredibly well. I’ve realised without a shadow of a doubt that I can do hard things; I’ve been doing them every single day since September 2010. I am so incredibly proud of myself; for how prepared I was going in to this and how I have approached it all.

I have written off at least the first six months to recovery. Even Blue Sunday is taking a back seat this year. My body is too vulnerable, and too susceptible to stressors, to ask very much of it right now. I have learnt to be very patient over the years.   

I am glad to be used to a lack of control and a reliance on others, but it’s still something that wears after a few weeks. I’m used to having toast that’s slightly different from how I’d make it for myself; used to not getting to choose which mug I fancy having my drink in, used to going without showers when I really need one.

We were prepared for an M.E. relapse and so, compared to my 2020 relapse, it’s been a walk in the park.

Rough overview of initial recovery

Hard to know what’s M.E., what’s menopause, and what’s surgery. Too soon to identify the differences. But the pain has definitely been bearable.

Care

My care hasn’t quite gone to plan. I’ve been by myself a lot which was not what was meant to happen. My husband took the first week off, and my parents called in too. For the second week, he had to be back at work so I was to stay with my parents. But while I was there, they both came down with bad colds. Bit stressful! We felt being back at home with less care was better than me staying and catching a cold (particular when I couldn’t yet cough or sneeze). My sister couldn’t visit either because she had a cough and so did one of my nephews. I didn’t get to see any of my nephews for over a month, and only had one friend who could visit me.

Hygiene

Some of the basics have gone. I can’t wash my face, or brush my teeth twice a day (of course I can’t always do those things because of M.E. anyway, but worth noting). In the first days my husband helped me brush my teeth before bed with the help of a trusty cup to spit into. We’ve done this before, and we know we’ve got it covered.

Wet wipes for the win, as they so often are anyway. And face wipes too. I bought a new paddle brush for my hair as I know them to be easier on my scalp if my hair is knotty.

I had my first shower a week after surgery. I’ve already got a bath board and a good system going with my husband on hand for support. When I relapsed in 2020, I could have a bath every now and then, but not a shower. It was a sensory thing I think – the noise, the feeling of water. I knew I couldn’t have a bath post-op for possibly 12 weeks. So it is a relief and a delight to have been able to shower up to a few times a week!

Eating

I didn’t have much of an appetite for the first 10 days or so. Full disclosure, weight gain is at the back of my mind. It can happen with the menopause and I know it happens for me when I’m in bed more. But I haven’t been restrictive with what I’m eating. My body needs to build tissue and strength.

For the post-surgery constipation I relied on prunes, figs, peppermint tea! Wonderful things.

Bandages, incisions, and bleeding

I have three incision wounds, all with disposable stitches and tegadirm film dressings. My stitches started to fall out 19 days post-surgery. It took 4 weeks for the last one to budge. I cleaned them every few days with salt water, and changed the bandages at the same time.

By the two week mark I had stopped bleeding and didn’t need to use sanitary towels (or my new favourite stretchy Tena lady type disposable knickers). With my cervix removed, I now have a vaginal cuff. Bit freaked out by that actually but hey ho!

Anaesthesia

Like I said in the previous post, my anaesthetist gave me the standard anaesthesia and it wasn’t tweaked because of my M.E. Adrenaline wise, my teeth were chattering now and again for first 36 hours or so. I feel that it took about two weeks for the adrenaline to wear off, be that from the anaesthetic or just from my body’s natural response to the trauma of an operation. Although I felt incredibly close to vomiting a few hours after waking up from surgery, I didn’t actually vomit.

Toileting 

Good grief! The trapped wind pain was the devil himself. Peppermint tea helped a lot, and it had passed by the end of the week.

I managed a bowel movement by the second day but constipation was severe. I relied on fybogel sachets rather than the laxatives I was sent home with. I had a normal bowel movement by day 6, and things were fully back to normal by day 10

For the first three weeks I slept through the night and didn’t need a wee in the night which is unusual for me.

Emotions

Relief. Relief. Relief. Relief

I’ve cried a few happy tears of relief, and then a few of overwhelm. I feel like I haven’t processed it all yet, and tears aren’t coming as easily as they used to (I had this with Zoladex too and felt almost blocked up).

So far there hasn’t been any grief, with regards to childlessness. In fact, for the first time in perhaps five years I was able to read a post about someone with M.E.’s pregnancy and even congratulate them. This has been impossible for me to do before. But the lack of reproductive organs has taken any choice or doubt away. That feels freeing.

Aches and pains

I didn’t need the opioids I was sent home with and got by with paracetamol and ibuprofen. The pain was less severe than Adenomyosis pain.

It was very difficult to sit up or move for the first week (due to pain and swelling and tightness and a complete lack of core strength). But when you’ve had Severe M.E. and struggled to do those things you’re well equipped to manage a week or two of this. You can’t use your core at all. I found a knack for pulling myself up on my bedside drawer handle so I could sit on the edge of the bed before trying to stand up to use the toilet. Keeping my knees and ankles together was important to not accidentally pull my stitches or internal wounds.

I bought a postpartum abdominal band thingy because I found whenever I stood up, I needed pressure on my belly to reduce the pain and discomfort. I just felt more secure and protected with it on.

Pelvic aches worsened after day 10, but I was more mobile by then so could be just because I’m using my body that bit more.

After six weeks, it’s a period pain type ache rather than pain.

I had some numbness and tingling, and my skin was sore to touch between my belly button and pelvic area. The area that felt numb and tingly gradually reduced in size, with just the area over where my left ovary area was. By one month point this feeling had gone.

Exercise

Probably not something you ever thought I’d be blogging about. My risk of blood clots is greatly increased by my low mobility/sedentary lifestyle, which is a direct result of having M.E. I was given anti-coagulant injections for the first week which is standard practice (and had been told I’d have them longer than that. Much to my relief, I only ended up with a week’s worth. Nasty things.)

But I needed to be doing ‘simple’ exercises to reduce my risk of clots, keep my blood flowing, and strengthen my core.

Ankle flexes have been my go-to. As close to 30 as I can get, every hour, and when I first wake up. I usually can’t do them immediately after waking up because, well M.E., but I’m giving it a good go.

Abdominal core strengthening exercises and pelvic floor exercises have also been important. Pelvic tilts, knee rolls, bridges. I can only do two or three repetitions per day but hopefully that’s better than nothing.

Mobility

I could shuffle with help from the day after surgery. Once we’d got me home, I could get up the stairs to bed (we’d asked my Dad to help Mr Tree Surgeon get me upstairs but actually he wasn’t needed and we did okay).

My husband bought a second hand rollator and I used it to help me stand up off the toilet at my parents’ house (where I stayed for my second week of recovery) because their bathroom layout is different from ours. I used the rollator for shuffling around my parents’ bungalow, but honestly I was too tall for it and although I was quite slouched and hunched after surgery, it wasn’t much help.

By week 3, and back in my own home, I could use the stairs infrequently without help.

With my “sedentary lifestyle” I was to wear anti embolism stockings for six weeks, 23 hours a day. This was to reduce the risk of blood clots, which are more common after surgery. I been converted to compression socks. If anything has come out of this surgery it’s that I need to have been wearing compressions socks since 2010. They’ve improved my sleep because my feet never get swollen or too hot.

Unexpected things 

My mouth, lips and throat were a bit messed up from being intubated. I had ulcers on the roof of my roof and the back of my throat, and a lot of broken blood vessels. My lips were quite damaged and scabbed over.

My skin was flaky where the iodine (for operating) had been. Almost like a chemical peel.

My cannula bruise stuck around for 3 weeks and a scar has formed now.

I’ve had ingrown hairs on my calves from wearing compression socks round the clock.

Surgical menopause 

A few things I’ve noticed so far

• Night sweats and hot flashes by 3 week mark (HRT takes a few months to settle in)
• I feel grumpier! More irritable. Still not enough to take it out on anyone but definitely a noticeable feeling each day 
• Vivid dreams – had this with Zoladex so it’s either menopause or HRT

One of my biggest concerns with this surgery was whether I would be swapping PMDD for surgical menopause and whether they’d similar. PMDD was dire. Time will tell…I’ve had a couple of days so far where it’s felt similar in terms of feeling numb and detached, but so far it’s not as intense as PMDD.

I am concerned about entering the menopause so young, but haven’t had to fight for HRT and a, hopeful that will protect my body and bones from osteoporosis.

A new chapter

This has all been years in the making. Counselling, Adenomyosis diagnosis, mirena coil, Zoladex. I only ‘officially’ waited 5 months for surgery, and it was only in April 2024 that I knew surgery was on the cards after the initial rejection in February 2022. I don’t think that’s too bad, considering I’m 14 years in to M.E. with no end in sight for that particular ailment.

I’d been very concerned I’d be swapping one type of pain for another; that my bladder or bowel would be ‘caught’ during the keyhole surgery and I’d be swapping one issue for another. That hasn’t happened.

It’s too early to know the long term effect this will all have on M.E. Fatigue and lethargy and cognitive dysfunction are all winning at the moment, but not in the ways we’d feared; I am borderline functional, if not back to my pre-surgery baseline.