Sunday, 6 December 2015
When I was planning this blog post I thought about how I might explain what it feels like to have endometriosis and/or adenomyosis (I had both.) When I realised that the pain is so bad that you choose to have chemotherapy to make yourself feel better, I realised that it needed no further explanation.
2015 saw me have 9 shots of Prostap (Lupron), a GnRH analogue, which is a horrible injection used to treat prostate and breast cancer. I won't lie, it was hideous. The pain from endo is excruciating (mine was like advanced labour, and I did pass out on occasion.) Also, towards the end, I was bleeding heavily every day of the month without a break. Prostap DID stop all that, which is obviously good (and why I continued to take it). However, I just felt ill the whole time - I was moody, stressed, I had migraines, I had chronic pain - it was pretty bad. In addition, I needed a whole raft of medication to combat the side effects caused by the Prostap and they, themselves, came with side effects. I felt bloated and slow, I put on weight, my running - and life in general - slowed down massively. I am SO thankful that that stage of my life is now behind me.
Waiting for the hysterectomy was pretty hard. I felt strange wanting surgery, but I just wanted an end to both the original symptoms and those caused by the cure to the symptoms - and, indeed, those caused by the cure to the cure. I was officially put on the waiting list on July 7th 2015 (somewhat ironically 18 years exactly since I went into labour with my eldest chid) and I had my hysterectomy on November 25th 2015 - which was 20 weeks and 1 day later.
I had a Laparoscopically Assisted Vaginal Hysterectomy (LAVH) and bi-salpingo-oophorectomy (try saying that when you've had a drink!) which essentially means that I had my uterus, cervix, both fallopian tubes and both ovaries removed. They went in through my belly button, and put two probes in through the side of my abdomen, snipped the ligaments and pulled everything out vaginally.
I am now in full menopause and need HRT for at least the next 10 years and possibly more.
If you are facing something similar, this is my advice:
1) Do the emotional work
You are facing major, life changing surgery. Make sure you give yourself time to start the emotional work and make the mental adjustments you'll need to make. Obviously, once you have a hysterectomy you will no longer be able to have children. This wasn't a huge deal for me as I was lucky enough to know that my family was complete, but this isn't the case for all women. If you want more children, or even if you aren't sure either way, take special care of yourself and allow yourself the time you need to grieve. For it is a grief process, of sorts.
Even though I didn't want any more children, I had to come to terms with the fact that this was a major change of life stage for me. I had always imagined my future in terms of being a young, sexually active woman with a family. I hadn't really ever thought about what I might expect of my life after that stage. In not giving it any thought, I had kind of lined old age up after the baby stage, but in the blink of an eye I am suddenly here, at this stage of life, and I needed to think through what it means for me. I hope to continue to feel young and have a sex life. I hope to be fit and active for decades yet. However, one's self esteem can be very easily bound up in ideas of femininity and sexuality - especially in today's society - and the work of thinking through where you will fit in after your hysterectomy does take time. For me, reading, sitting with my feelings and talking it through with friends and my husband was enough to help me process everything. However, it might take a few sessions with a counsellor, so bear that in mind. Avoid this stage at your peril. You need to go into your hysterectomy with your emotional baggage as sorted as possible. I crocheted a blanket and found that I used a lot of this time to reflect upon what was to come.
2) Get Knowledgeable
I struggled to find many decent books on the topic of hysterectomy. Most of those I did find had an emphasis on homeopathy and alternative therapies that just aren't part of my world view. You may feel differently from me and, if you do, there are lots of resources like this available - Google away.
I read '101 Hints for a Happy Hysterectomy' which was OK. It wasn't rocket science, but it did provide some food for thought.
I liked the website "Hyster Sisters" (www.hystersisters.com) which had a huge resource of short articles which were very useful, especially when you have a particular question. However it is a US website and often the medical "what to expect from the system" information is very different from what we can expect in the UK. The forums really are excellent. I didn't post very much, but I read voraciously.
I joined several Facebook Groups and these really were where I learned most of what I knew. One note of caution: that vast majority of women in these groups are patients rather than medical professionals, so retain your critical eye. Make sure you check anything you're not sure about with your doctor or nurse. However, in terms of peer support, the Facebook groups are unrivalled. I used: Adenomyosis Support, Hysterectomy Sisterectomy, Early Menopause Support UK (I am 41, the average age of menopause in the UK is 52), Hysterectomy Support - A Caring Sisterhood, Adenomyosis and Hysterectomy Sisters UK.
Write down any questions you have and take them to your appointments with your gynaecologist.
3) Get Prepared
This is the part I jumped right into and, in retrospect, it was the least important of them all. However, there are lots of ways you can make your life easier after the op, so why not take advantage?
I compiled a ***huge*** list of all the hints and tips I could find, then picked out which made most sense to me and my life at the time. I will share this list with you and urge you to be equally critical. Please don't feel as though you need to do everything on the list, I think that would not only be unnecessary but it would drive you mad.
Have a short and long stay hospital list. Pack an overnight bag and then put the rest of your supplies in a box or bag at home. I only stayed for 2 nights and didn't need a lot of the stuff I thought I would. If it's all together in one place at home, it's easier for someone to bring it in for you.
Things to pack for the hospital and the week afterwards -
- 3 x nighties
(I didn't want anything with a waist band in case I had unexpected abdominal surgery. I was glad I did this - and felt most sensitive about 5 - 7 days post op. I went for long nighties for maximum coverage around strangers and their visitors, having visited my Mum in hospital a few months prior and seeing more of one middle aged lady than you should ever see...)
- Lightweight dressing gown
Hospital are hotter than the hinges of hell. I took satin, which was awful as it was sweaty. Cotton would be better. You will wear your dressing gown a lot, so choose carefully.
- Towel x 2
One for hair, one for body. I took a shower on day 2 but was very glad of a strip wash next to my bed on day 1. Have more on standby at home that a visitor can bring in, as there's nothing so lovely as a clean towel if you've gone to the effort to have a shower when you're unwell.
- Front closing bras
reaching around might be difficult if you have abdominal surgery. I went for non-wired which I actually found more uncomfortable (I normally wear underwired bras) as they soaked up sweat and kept my skin damp. Know what you like and are used to.
- Big Knickers
1 to 2 sizes bigger is a must. I bought big old apple catchers, but I didn't wear them much as I don't usually wear that style of pants. Again, this is the same advice as above - know what you usually find most comfortable and go with that. Don't blindly follow what other people - including me - say. Whilst we're on this topic, I felt kind of winded for a few days - the way I felt after pregnancy when my bump had gone. I have heard people suggest support pants (or Spandex) but this was anathema to me.
- Bed socks
I don't get cold feet often so didn't take any in, but they were in my "at home" pack. You know yourself best.
- Crocs or flip flops
for wearing in the shower. Other people's feet?! Bleurgh.
- Sanitary Towels
This was the item people on the ward tended to forget. You do bleed, but it's more like the blood you get when you have skinned your knee than a period. Decide for yourself whether you'd prefer tiny towels, or big ole' mattresses - I went for the soft, fluffy, cotton wool sort as I'd been advised when I had my babies that the Always gel sort can dry out stitches and your foof area in general. I did not regret my decision. DO NOT take tampons, everything will be much too sore.
- Wash Bag
Buy those miniature bottles that you get to go on holiday as you won't be able to lift lots of big bottles. I put too many into my wash bag (it was too heavy), so my advice would be to double up on products - just use shampoo for a couple of days, not shampoo and conditioner, and use shampoo to wash your body, for example. Or buy products you can use at your bed side - leave in conditioner, face cream and hand cream not kept in your wash bag, etc. I actually made a wash bag with a shoulder strap, and that was helpful.
Things you might like to put in your wash bag -
(if you need them all, consider having a smaller bag to take to the bathroom and move products from the big bag to the small when you need them):
shampoo / conditioner / body wash / deodorant / face cream / hair brush / make up / hand cream / lip salve / hair bobbles / dry shampoo / waterless body wash and shampoo (I bought this on a recommendation and hated it, it has an awful really strong fruity smell. But, in principal, the idea is good). Anti bac gel, toothbrush (some people say an electric one is easier on tummy muscles, but I managed fine with a manual), toothpaste
I used the website www.gotiny.co.uk to buy miniature toiletries, but they also sell them for a good price in Wilkos.
- IPad / Phone / Chargers (preload with films and audiobooks) Audiobooks / podcasts were a godsend. I couldn't concentrate on a book and, TBH, I often drifted off with an audiobook on, so make sure it's something easy to follow. Please be aware that my hospital had no wifi, which rendered my iPad useless, and you weren't allowed to charge devices either. It made me realise how much comfort my phone brought me, by being in touch with my loved ones. If my items were PAT tested I would have been able to use them, so if you have access to PAT testing through work, it's something worth doing.
You also need non-electronic ways of entertaining yourself.
My Runphones were perfect.
- Eye Mask / Ear Plugs
I can't recommend these highly enough. Helpful to help you sleep, escape from other people and I used mine when there was a distressing emergency on the ward. I couldn't help and I'd just be putting extra strain on the doctors and nurses if I got upset, so I took myself out of it.
- Adult Colouring book and pens - I did loads of this, it was the perfect activity.
- Hard sweets - for post anaesthetic, dry mouth. I took in Polos to double up the wind-reducing mint effect.
- Squash - if you don't always like water, squash is helpful. I didn't use mine much in hospital, but I did at home. Peppermint Cordial is ideal for hospital as it helps bring up wind (which caused as much pain as the actual surgery.) Mine was prescribed for twice a day. I was horrified, and brought my own in as I needed more. I was led to believe hospitals were very proactive when dealing with wind, but mine were not.
- Flexible Straws - to sip when you're not sitting up straight. Invaluable.
- Small Fan - I had my op in November and it was so stiflingly hot I felt awful. A hand held fan was a lovely luxury.
- V Shaped pillow - I cannot tell you what a treat it was to have pillow that smelled like home. I was surprised by how emotionally vulnerable I felt afterwards and this really helped.
- Baby wipes - Lovely for a cool down and an instant refresh. I didn't actually take these in and I regretted it.
- Large Zip Lock Bags - These are great for putting dirty laundry in. I'm always a bit suspicious about cleanliness in hospitals (although actually, Hull Royal was immaculate) so it was nice to keep dirty clothes very separate from clean ones. The zip lock really helped with this. I appreciate I may be a little OTT about this...
- Any medication you need, in their original boxes (ask about this at your pre-op if you have any questions)
- Snacks - cereal bars, plain biscuits, grapes. I took these in because I was concerned about taking pain killers on an empty stomach. I ate very little when in hospital (which is not like me at all) but there were times when nibbling on a plain biscuit was helpful. I expected to feel like I did after giving birth, but breastfeeding obviously plays havoc with your metabolism because I did not feel hungry at all - I was always starving when I was breastfeeding.
- Thermos Mug - I did without this luxury and didn't miss it. I didn't really fancy tea or coffee much, either.
- Chewing Gum - apparently it helps with wind pain. I tried it, but was unconvinced.
For home afterwards:
- Maxi dresses these were *invaluable* because I had a few days where I could not bear waist bands and my tummy was very swollen. I used summer dresses and layered them up for warmth.
- Lounge pants, 2 sizes bigger - Luxury. You can see me smiling from here, can't you? Now is not the time for style. Embrace the comfortable.
- Peppermint tea (helps gets rid of wind - they expand your abdomen with gas to do the op.) I think herbal tea tastes like pond water and my tastes didn't change post op, so I didn't use mine.
- Stool Softeners I got myself in a bit of a panic about stool softeners as everyone goes on about them SO MUCH. My first post-op poo was a bit scary, but I breathed deeply and went with the flow (as it were), secure in the knowledge that my body knew what it was doing - and it did. Pooing was nowhere near as painful as I thought it would be. My first poo was on day 2 - earlier than I expected. Don't be afraid to ask for Movicol or Lactulose on the ward if you feel you need it. Most people were given it to go home with.
And guess what I found? The most effective remedy was to make sure I got my 5 a day and drank lots of water. That worked way better than the stool softeners. In fact, that would be my top post-op tip - get your 5 a day and drink lots of water. Not exactly rocket science. Bran Flakes and nuts also helped.
- Windeze - I'm not sure if they helped, or they made me feel better because I was doing as much as I could to reduce wind, but it was worth it. They didn't do any harm.
- Laxatives - I didn't need them, but it was nice to have them in the house in case I did. Glycerin suppositories are good because they are effective but inert.
- Small pillow to hold against your abdomen when coughing / sneezing / to guard against small children. I just used a sofa scatter cushion. It worked.
- Grabber - one of those devices to pick things up off the floor. I did not get one and I did not miss it. I was more than capable of picking things up off the floor after a day or two. It might be different if you had an abdominal hysterectomy though.
- Lightweight tray for lap - I didn't use one, but I did find it hard to have the laptop on my lap for a few days, and that surprised me.
- Bath Step - to get in and out of the shower. I didn't use one, but we have one shower that is walk-in rather than over the bath, so I was grateful to use that. I think I would have appreciated a bath step in the early days if I didn't have this option.
- Arrange bedside table before you go into hospital, so everything is at easy reach when you get home. I didn't spend any time in bed, other than at night, so this wouldn't have been helpful to me.
- Pedicure and manicure before op. Entirely pointless as you have to take off all nail polish before the op. Glad I didn't get it done.
- Hair cut before op - I didn't do this and I would have been more comfortable if I had.
- Bulk cook and fill freezer - my husband is more than willing and able to cook for the family. However, if you don't have this option then bulk cooking is a great idea. Also make sure you have takeaway leaflets in, and don't beat yourself up if you use them. As long as everyone in the family, especially small children, are fed then it doesn't matter where the food comes from for a few days. My only caveat would be to be mindful that processed food doesn't contain a lot of fruit and veg and this may impact on how traumatic you find it to return to full bowel health.
- Spring clean / decorate / DIY done - WTF? Decorate and DIY? No. I didn't spring clean because I was working until 4.30am the two nights before I went into hospital to get my paid work done. It would have been nice to get the place tidier, but it was no big deal for me. Lots of women on the ward talked a lot about getting their ironing up to date, etc. If this is important to you, then getting it done beforehand will give you peace of mind.
- Travel kettle - I didn't bother and didn't need it.
- Teddy bear for small children to kiss when you're away - I didn't do this and the children didn't need it, but it's a nice idea.
Other things I read about, but are not my sort of thing. They may be yours though:
- Zinc supplements
- Calendula cream - scar healing
4) Adjust your expectations
Everyone told me that I would feel better from the moment I woke up. I went into hospital just before my op and both women on my ward said it was much easier than they imagined.
I actually found it harder than I expected, for the first couple of days at least. I had never had an operation before, or a general anaesthetic. I felt sick, suffocated and claustrophobic and my pain wasn't managed especially well because nobody took account of the vast amount of painkillers I was on before the op. However, this had the unexpected benefit of weaning my off the painkillers very quickly and, within a couple of days, I needed fewer pain killers than pre-op.
I felt as though I had cabin favour for the first week or so. It is all getting better - and physically I am OK now, just quite tired. I guess my advice would be to expect the unexpected.
5) What worked best for me?
If I had to sum up the things that worked best for me, this is what I'd say:
- Use normal knickers and bra. Go with what you are used to. Now is not the time to make changes.
- Get up and about as soon as possible and as often as possible. Potter about. Have a little wander round every hour without fail; more if possible. I walked circuits of the ward and have done the same regularly since coming home. Within 5 days I was outside walking up to 1km at a time. It made me tired, but I felt SO MUCH better with a bit of fresh air.
- listen to your body - rest when it wants, and take care when lifting. I could do more than I imagined though.
- Don't be afraid to fart. Don't cringe! We're grown women, we can talk about trumping. The wind can be more painful than the surgery, so don't be polite post-op. The only way shyness is good is if it encourages you to walk to the bathroom to parp - walking is very good for you. If you worry about wind, sit on the toilet to trump. Your body goes into autopilot, and you really do need to get rid of that stuff. No-one else will tell you this stuff. You're welcome.
- Expect to cry. I asked the nurse if it was normal, then witnessed all the other women being surprised when they had a little weep. It's the anaesthetic / hormones.
- There were two worst bits for me - getting out of bed for the first time and having the vaginal pack removed. Once I was out of bed, standing up and walking around were much, much easier than getting up that first time. As for the vaginal pack - imagine the magician's hanky trick, and you kind of get the picture. There was a lot of it and it hurt like hell when it was coming out. But once it was out I felt so much better.
- I was sent home with Fragmin injections to self administer, to prevent DVT. They weren't hard to do, but be prepared for it. I also had to wear compression stockings whilst on the ward, but thankfully was able to take them off when I came home. I used running compression socks for a couple of days and they were much more comfy as one toe doesn't poke out (does this happen to anyone else with compression stockings?! It drives me mad.)
- Green smoothies, fresh soup cooked from frozen veg - make lots and enjoy. It will do your innards no end of good and is the easiest way to get your 5 a day.
- Water, water, water. Think how good your skin will be if you keep this up! Water fills you up, cleans you out and makes you walk to the bathroom. ALL GOOD.
- I was rather surprised to have insomnia for a few days post-op. It did pass without any intervention but don't be surprised if this happens. Again, it's something to do with the anaesthetic, apparently.
- Make sure you have enough pain relief at home. A tip one of the nurses gave me was to make up peppermint cordial with warm water and dissolve paracetamol in it. It was magical. I am now a total convert to soluble paracetamol.
- If you have small children, like I do, then you will need support with them. I got stuck on the way home from the ward. My husband went to fetch the car so I didn't have to walk too far, and my 3 year old daughter had one of those "if I don't go to the toilet now I'm going to do it on the floor" moments. I had no choice - I had to lift her onto the toilet. Not advisable then, and it's something I avoid now. Use every contact you can to get people to help you out by minding the children, even if it's only for an hour whilst you get some sleep. Pay for childcare. You will need it.
I think that is everything in this mammoth post. I hope you do well - I am 11 days post op and already I feel so much better than before in so many ways. I'm most excited about embracing the next stage of my life.
If you are post-op, please post your top tips in the comments below, so we can provide a resource for women earlier in their journey.
Love - and very best wishes