Sunday, January 27, 2013

Endo Happy: Surgery & Recovery Tips

Following on from last weeks post of Acceptance, this week is about preparation which is a practical approach to tackling things that are ahead of us. Most of us I'm sure know now what it is like to be in hospital as a result of living with endometriosis, I don't think having surgery ever gets any easiar, the nerves remain and the last minute fears arise but if we can prepare for our hospital stay and recovery time we are one step ahead in coping with this emotional and physical ordeal. I recently asked you all to answer two questtions regards surgery and recovery time and I have used your answers along with my experiences to create this Surgery Guide that I hope will help all of you.

(Photo Credit: Endo Happy)
Things that you may not know about your Surgery

·          Firstly please be aware that Endometriosis can reoccur after surgery, educate yourself about the condition and discuss with your consultant what treatment you will be given post surgery to delay or prevent reoccurrences. Make healthy eating and exercise a priority in your daily routine. Gluten, dairy and meat products are all thought to ‘encourage’ growth of endometriosis, consider cutting these out along with keeping alcohol, caffeine and sugar to a minimum! Eat plenty of fruit, vegetables, fibre, oily fish, legumes, nuts and seeds as well as drinking lots of water and herbal teas. A healthy body is a strong body and will help you to face whatever struggles you need to overcome.

·          If you are having a laparoscopy be aware that you may need to stay overnight depending how you are after the operation and what is done, however most of you will go home the same day. With a laparotomy/hysterectomy you will likely need to stay for 3-5 days, again it depends on individual circumstances. Recovery time for a laparoscopy is average 2 weeks and laparotomy/hysterectomy is average 6 weeks but your consultant/the hospital will advise you on an individual basis. It’s important to tell your employer how long you are likely required to need to be off work so that you are not feeling pressured to return to work before you are ready.

·          When you wake up your mouth may feel dry and your throat may be sore. You will may have a drain in your pelvis too, you will see blood coming out of it but do not be alarmed, it’s a standard procedure, doesn’t hurt, but can be uncomfortable if you need to sleep with it in but once out the incision will heal quickly. You may also have a catheter in depending on the procedure, this can be uncomfortable at times but is for your benefit so you don’t need to get up to urinate, if it is bothering you try changing position slightly, it can help and/or tell the nurse and they will help!

·          After a laparoscopy you will likely have 3-4 small incisions on your abdomen and one in your belly button, they heal quickly and most of them will become very feint. After a laparotomy you will likely have a 3-4 inch cut on your bikini line. Both will have a dressing on them, again depending on what is done you may see some bruising on your abdomen but this is normal. A cut will take longer to heal but will after time become less noticeable too. 

·          Be warned that the couple of days after surgery can be the worst, as you come down from the anaesthetic you may start to become very emotional, many endosisters found themselves crying, if this is the case then just let the tears out. You may also feel overwhelmed from the whole experience of the waiting for it, the fear that you may feel in the days leading up to it, the actual experience of being in hospital itself and the pain you have been enduring up to surgery. The pain itself can also be worse in this time, do not be afraid to ask for additional pain relief if you need it, you may also feel sick or have a headache, and again they can give you something to help with this.

·          Whatever procedure you have, you will be very bloated and have a lot of ‘gas’ inside you that needs to escape, this can be extremely sore and often result in a painful shoulder, but usually this will go with a few days and when you are up and walking about it will help to disperse it. The bloating will stay with you for a while, but you should see a slight change every day until it disappears.  

·          Some of you have reported that your incisions bled slightly and some of you experienced passing blood clots soon after surgery. 

·          The majority of you also reported a ‘stinging/burning’ while urinating after the catheter is removed, this usually passes within a few days, try to relax while on the toilet and drink plenty of water! It may also take a few days for your bowel movements to become regular again, I wouldn’t worry too much, again drink lot’s of water, keep moving and you will soon hear everything gurgling away inside. Don’t strain when on the toilet as this can be harmful, the hospital may give you a gentle laxative to take home with you (more common after a laparotomy) but I wouldn’t resort to a shop bought product. 

·          It can be common for incisions/wounds to become infected, once you are home, keep them dry, clean as per hospital recommendation and get as much air to them as possible. My tip is to lie on top of your bed, once a day, with only your underwear on for at least 30mins. An infection is usually very smelly, if you think you may have one contact your GP to make an appointment, they are easily treatable, usually with antibiotics.

·          You will feel incredibly tired and will find simple tasks exhausting, the hospital will advise what you should/shouldn’t do during your recovery time, please take the advice seriously. If you don’t further complications can result, as many of you reported!

·          Lastly many endosisters have reported the first ‘period’ after surgery to be very painful and sometimes for it to of come early, let your partners know this too so they can be prepared for you need some sleep/rest for a few days if this happens.

Things to help you with your recovery

·          Firstly acknowledge that your recovery time is essential to your healing and is also an opportunity for you to recover emotionally and physically from the pain and suffering you have had as a result of your endometriosis. You may also get news after your surgery that isn’t positive and be feeling overwhelmed from that too. It’s essential to rest i.e. sleep/lie down, don’t rush back to work, school or college, those that have did told me it just led to further complications. Those around you may perceive you to be ‘recovered’ if you start rushing about again; remember that nobody cares about your life more than you do.

·          Before you go into hospital get organised! Get some grocery shopping done and/or prepare meals to be put in the freezer. If you haven’t done so already register online with your favourite supermarket so that post op you can get your shopping delivered (so much easier!). 

·          If you have children arrange for childcare for perhaps 1-2 days longer than you may think is necessary. Look ahead to what activities they have got and make sure kit/bags etc are organised for them. Make a list of all essential numbers i.e. doctor, school etc and give it to whoever is looking after them also. Depending on their age consider whether you want them to visit you in hospital if you need to stay in, for younger children it can be upsetting for them to see you in such an unfamiliar environment, but only you will know what is best for you and your family. Again if you have pets make sure their care is organised and vet numbers etc are left with plenty of pet food purchased in advance.

·          Presurgery it’s a good idea to cut down on alcohol & caffeine and increase fruit & vegetable intake, I would also recommend to take vitamin C & zinc for the immune system and an endosister recommends arnica tablets for bruising.

·          A supply of DVD’s, Books and Magazines is essential, so get this organised before you go in, ask friends and family for recommendations and/or if they have anything you can borrow, a ‘box set’ is an endosister favourite. This is an easy way for people to help you, often your friends/family just don’t know what to do, but anybody can help with practical issues. I personally recommend not watching ‘daytime’ TV it can be very repetitive and bring on cabin fever! Put the radio instead, music is very therapeutic and the radio can be very entertaining especially when lying in bed.

·          The following are essential purchases for post surgery; mints (dry mouth) peppermint capsules (gas, wind, shoulder pain) bottle of potassium citrate (stinging/burning while urinating) eye mask (help you sleep) new pyjamas (to feel nice while resting) a loose comfortable nightie (to wear in hospital if a longer stay) comfortable trousers to wear home from hospital & while recovering, good suggestions are leggings, sweat pants or yoga pants (if may be a good idea to get a size bigger than you need, remember you will be very bloated) The Hospital should discharge you with some pain killers but make sure you have some basic meds at home too. I would recommend some vapour rub too (blocked/stuffy sinuses) Honey (to ease a sore throat) big knickers, the type that cover your belly button (much more comfortable than the smaller kind that can irritate/rub wounds that are trying to heal. I recommend to buy a size bigger then you usually wear)

·          Depending on your length of stay your hospital will advise you what else to bring, the basics are a nightie, slippers, dressing gown, flannel for washing, body wash, shampoo + conditioner, something to read and your iPod to listen to some music. I would recommend taking your favourite snacks in with you, nothing like looking forward to some chocolate etc when you are able to eat again. It may also be an idea to take your favourite tea in with you also; just a few bags in a plastic bag won’t take up much room in your hospital bag.

·          One of the most popular mentions was to get yourself a soft ‘squishy’ pillow for the journey home from the hospital (to place on your lap, under the seat belt) and to use at home to make yourself more comfortable when resting, popular suggestions were a ‘v’ shaped pillow and a ‘feather’ pillow, all easily available online.

·          The most popular mention was to have a heating pad and/or ice pack. Many endosisters use an icepack as a way to sooth the swelling and cool you down and a heating pad to ease the pain. Popular variations of a heating pad are a hot water bottle, electric hot water bottle, wheat bag and one endosisters told of a ‘fuzzy’ bag! An electric blanket sounds old fashioned but is a lovely way to warm up your bed ready for you to get into it. 

·          Lastly everybody said that support during this process was essential. Let somebody take you to hospital and to come and see you after the op, you may not be up to much of a conversation but just seeing somebody you love there is very reassuring. Don’t be afraid to tell people about your surgery either, people can be very kind, and just a few words of encouragement may help you through it. Many endo sisters had partners/friends/family stay with them during the recovery process.


Thank you to Katie from Endo Happy for another amazing blog post!! This is a very
helpful list of tips for pre-surgery and recovery! If you are not already doing so,
please follow Endo Happy on Twitter @_endohappy

What advice do you have for someone with an upcoming surgery? Leave a comment
xo Heather 


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    Thanks, xoxo

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  6. Thanks for this article! I just had my first laparoscopy two days ago to remove a cyst and they found endo while they were in there too, which they were able to remove. Not really sure what to expect going forward, but seems your blog has a lot of helpful info. :)

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