ENGLISH BLOG

Endometriosis surgery

02/04/2017 Emma H.

Part 1 - How to best get ready

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Endometriosis can be fully removed (cured, if you wish) only by a well-performed surgery. (If you don’t know much about the disease, feel free to read my story Endo… Learning to live with pain or check out my article on the first documentary on endo.)

Endometriosis is a systemic disease (possibly of autoimmune nature) that affects approximately 1 in 10 women. It is usually extremely painful and it’s one of the most common causes of infertility. It is caused by the uterus lining (the endometrium) escaping into the abdominal cavity, where it sits and grows further (e.g. on the ovary, bladder, bowels or the abdominal wall). The endometrial tissue responds to the female cycle - it grows and gets ready for potential pregnancy, and it is shed and bleeds if no fertilized egg was produced in a given month. The problem is that the bleeding tissue is trapped inside the body and cannot leave, thus causing extremely painful internal bleeding and inflammation.

Endometriosis is usually removed by laparoscopy. The technique that is almost always successful is called wide excision. For detailed explanation on laparoscopic removal of endometriosis I warmly recommend Dr. Andrew Cook’s book Stop Endometriosis and Pelvic Pain: What every Woman and her Doctor Need to Know [1]. Dr. Cook explains that there are two effective excision techniques – thermal excision or ablative vaporization. Both lead to complete removal of the disease. This means that there is no endometrial tissue left to grow in the body and symptoms can’t come back in time.

Excision is very demanding in terms of both the surgeon’s skill and time. A well-performed surgery can take on average four hours, but depending on the endometrial growth in the abdomen, it can take up to eight hours, possibly even longer. That’s why it’s vitally important to look for an endometriosis specialist skilled in wide excision.

Note:

If the technique of coagulation (or its sub-type cauterization) is used, some endometrial tissue is usually left in the body. The disease remains active, the endo lesions start to grow again with time and the disease “comes back”.

Now I’ve given you an overview of endo surgery basics, let’s have a look at how to best get ready for it.

1. Take your time to figure out whether you really want to undergo surgery.

This advice may seem a bit superfluous in an article on actual surgery preparation but I still believe it’s the most important one. Endometriosis surgery can bring about a lot of complications, in addition to the fact that surgeries in general put a burden on the body and several weeks of recovery are needed. Moreover, if the surgery is not done well, it can do more harm than good. This is the main reason why endometriosis “comes back” in so many women who’ve undergone one or several laparoscopies.

This is how I see it: Take your time to reflect upon whether you’re ready for an endo surgery in the given moment in your life. I personally believe that a well-performed surgery is worth all the hassle but be aware of the fact that it is hardly a straightforward process.

Think about whether this is the right time for your surgery. Of course, you could clench your teeth, take two weeks off work and just do it, but I’m convinced that you deserve better than that. A wrong moment, a wrong surgeon and a skipped preparation could hamper your recovery process and your overall health.

If there are important projects you need to finish at school, at work or with your family, this may not be the right moment for such a complicated procedure. You may be better off waiting a bit. If you decide to wait, this may also give you a wonderful opportunity to focus on diet and lifestyle changes that are known to alleviate endometriosis symptoms greatly. And you’ll give yourself more time to make the right decision. (I basically took five years to figure out what the disease is about, how I can manage it naturally and where to get the best care in my area. During this time, I was able to reverse many of my symptoms and get myself into a great shape, which in turn helped me deal with the surgery much better, and speed up recovery. It was all worth it!)

If you come to the conclusion that you’re ready and a surgery is the right thing for you, please keep in mind that you’ll need to dedicate time and energy to your health, and that other things may need to be put on hold for a while.

2. Get hold of as much information as possible.

Endometriosis is a pretty complicated disease. It’s still not well understood and there are many myths surrounding it (often still perpetuated by unknowledgeable doctors themselves). Make sure you find as much information as possible (check out my favourite books section, for example). Get to know your enemy. Not only will it be easier to make truly informed decisions but it will also be easier to talk to your doctor (and to decide whether he or she is a good specialist). If they tell you that “Endometriosis can be cured with the pill.” or “When you get pregnant, the disease will go away.” you’ll know that you’re not talking to a very knowledgeable individual.

It is true that endometriosis can only be diagnosed with 100% certainty through a laparoscopy. I personally had it confirmed via an MRI (which happens in about half the cases, when you have so called deep-tissue endometriosis). However, more and more specialists worldwide agree that endo diagnosis should be built primarily on the patient’s symptomology.

I warmly recommend the above-mentioned book and documentary to start with. Please, also keep in mind that endo is a complex systemic disease whose many symptoms (like pain, inflammation, digestive issues or chronic fatigue) can be managed through diet and lifestyle changes (which is the main topic of my blog). I also encourage you to read Aubree Deimler’s book From Pain to Peace with Endo [2] which focuses on natural remedies. Feel free to join my English Facebook page Good Vibes – Healing through nutrition, where I share tons of useful resources virtually every day.

3. Find a good specialist.

After you’ve done your research on endometriosis, it will be clear that in order to have a successful surgery it needs to be performed by an endometriosis excision specialist. Because the surgeon needs to find all endometriosis lesions in the abdominal cavity and remove them completely, the surgery is very demanding.

Be aware of the fact that looking for a good specialist will take time and effort. Depending on where you live, you may need to travel to see them. And you will most likely need to have more than just one appointment before you head to the hospital. (This is for your own good, to get all your questions answered and all your fears allayed. Do not let anyone convince you otherwise.)

4. Discuss hormonal treatment with your specialist.

The majority of doctors I’ve seen have offered hormonal treatment as the first option (either the pill, or stronger medications inducing hormonal menopause). Many gynaecologists will tell you that apart from surgery, hormones are the only option to manage (even cure) the disease. Let me stress once again: This is not true! Once you have endometriosis lesions in the abdominal cavity, they will not go away (and can only be removed via surgery). Which means that hormonal treatment will not make them go away either.

Hormones deactivate the disease, you will stop ovulating (and sometimes menstruating), which in turn represses the unpleasant painful symptoms – the tissue will grow less, you will bleed less and it will be less painful (hopefully). But this does not address the root cause of the symptoms.

Moreover, hormonal treatment can have a huge negative impact on your health. It completely disrupts the functioning of the endocrine system and brings about many negative side effects (it damages the digestive tract, impairing nutrient absorption, but it can also lead to conditions like depression or anxiety). Plus, don’t forget that once you stop taking hormones, your body will need a lot of time to get back to natural balance.

And there is one more problem with hormonal treatment of endometriosis. Endo is an estrogen-driven disease, endometrial tissue depends on estrogen, and it releases its own estrogen, too. As long as the medication contains even a minuscule amount of the hormone, it can make the disease worse. Even though your symptoms will be masked, the disease will likely spread without you being aware of it.

I doubt that your doctor will be open to this type of conversation (if they are, shout it from the rooftops so that other women can get hold of the doctor!). Of course, it’s up to you to consider the pros and cons of hormonal treatment. But I believe you should definitely talk about it before the surgery and find out whether the particular surgeon requires an accompanying hormonal treatment to go with it. You can also make it clear that this is not a viable option for you and try to discuss an acceptable alternative.

5. Focus on the things you can influence.

Once you have your surgery date, it is best to direct your energy towards things you can truly influence. Let’s admit it – we are all scared before a surgery (especially after we’ve done our homework and found what a complicated procedure an endo surgery is). Here are some tips on how to get ready and what not to forget.

6. Arrange for post-op care.

You won’t be able to function normally (at least not 100%) for at least two weeks after the surgery (depending on the extent of the lesions). For at least a few days, you will need someone to be with you and help you with the basics of taking care of yourself and the household. (I had someone stay at my place for a week and will get grocery and heavy-lifting help for at least a month.)

7. Clean up your diet but don’t start any new experiments.

Three or four weeks before the surgery is the best moment to get back to fully adhering to your dietary protocol. I am currently doing a modified Paleo (after an autoimmune elimination phase I now know what foods are safe for me and which ones I’d better avoid, or eat scarcely).

There are times when you can let go and forget about healthy diet for a bit. Birthdays and celebrations, for example. But there are also moments when it’s more than worth it to religiously stick to your protocol. I do that usually while on a business trip because I need to be in top shape (plus who’d want to be bothered with digestive issues when away from home).

Another moment to be extra strict is before surgery. I recommend sticking to your protocol (e.g. grain-free, dairy-free, Paleo, or whatever you’re doing), plus skip treats that are otherwise allowed once or twice a week (i.e. quit sugar). You will make it possible for your body to gradually and naturally get rid of toxins. It won’t be burdened with substances it has trouble processing and it will be ready to fully launch all the necessary healing and regeneration processes after the surgery. Don’t forget that your body will also be full of chemicals from the  aesthesia and painkillers you’ll get during and after surgery.

These usually bring about headaches, nausea or muscle pain, as well as a general feeling of being drugged. Your liver will have to do the much work to get rid of these toxins. The more you reduce the load beforehand, the faster the detox and recovery afterwards.

I would still warn against any experiments, though. You could think: “If I need to quit sugar, I may just as well go low-carb and stick to 50g of carbs a day.” I’d be all for such a move, but not before surgery (if you’re not used to it as part of your regular protocol). Such dramatic changes present a challenge for the body. They increase its stress response, cortisol levels go up, your adrenals get more taxed and your thyroid needs to keep up. The whole balance could get tipped in the wrong direction and that’s not what you need right now. You need to be strong and well rested.

8. Allow yourself to ease up on physical activity.

The same applies to your training. If you’re used to pushing your limits, hats off if you do that with endometriosis but you should consider slowing down three to four weeks before surgery. I’m not saying you should stop exercising (let alone moving) because there’s no doubt that physical activity is imperative when it comes to chronic conditions. I’m just saying that you may skip that breakthrough workout Mark Sisson advocates to give your body a shock and force it to get better. Such workouts require several days of recovery. Give your body space to gather energy for the upcoming event. (And trust me, I know what I’m talking about. I’ve paid for pushing hard myself – though not before surgery, fortunately – by getting to a point where I totally crashed and had to take a year-long break from exercising. I know it’s hard to admit that you’re chronically ill. I know it’s hard to get to terms with the fact that you’re not able to do what you were able to a year or two ago. But ruining your body’s ability to regenerate and find balance is not worth it.)

This is the right moment to remember your old yoga routine or find that list of meditation songs you put away.

9. Stop taking dietary supplements.

When you talk to your doctor, don’t forget to ask about what medication (and supplements!) you need to stop taking before the surgery. Drugs like aspirin influence blood-clotting abilities and it’s mandatory to stop taking them before any surgery. But supplements like fish oil (omega-3) have the same effect! It’s better to stop taking them seven to ten days before surgery. (Discuss specifics with your doctor.) The same applies to vitamin E. Other supplements may tamper with anesthesia or painkiller effects. Check out this article at LiveStrong for more details – it says that it is preferable to stop taking supplements like ginger, ginseng, echinacea, St. John’s wort or valerian (among others). And don’t forget to ask your doctor how soon after the surgery you can start taking them again.

10. Cook some meals beforehand.

This really depends on who will take care of you after the surgery. It may be worth considering preparing and freezing some post-op friendly meals for when you’re back home. Anaesthesia and painkillers may slow down your digestion and cause constipation. Plus, your belly will be sore from the excision, so you want to have a supply of digestion-friendly meals ready.

I decided to do a few more days of no-fibre diet after surgery (fibre adds bulk to the stool), incorporating primarily broth water and warm coconut cream.

Think about what other meals are low-fibre but still full of nutrients, vitamins and minerals. The more you stick to your healing dietary protocol after surgery, the faster your body will be able to recover.

Note: It’s customary to do a bowel preparation the night before an endometriosis surgery, in case endo needs to be removed from the bowels, too. The preparation is usually the same as colonoscopy preparation – four days of no-fibre diet and a laxative drink the night before. I already had an experience with this, so I knew that being on the Autoimmune Paleo Protocol, there won’t be much left for me to eat. So, I did four days of broth water and coconut cream detox – with great success! This helped my body to naturally start detoxing on the third day and I had no issues with the laxative prep the night before. I’m also sure that this approach helped my body recover from the anaesthesia extra fast, with virtually no side effects. I woke up after the colonoscopy and literally in five minutes I was ready to up and walk away on my two feet (which I did, only three hours later). I had no headache whatsoever. As far as my endo surgery goes, it wasn’t as rosy but I still managed to recover miraculously fast, and I’m convinced it was because of my careful approach before the surgery.

11. Get your hospital bag ready.

There are several items you don’t want to forget. Make sure you have comfortable, loosely-fitting clothes (possibly a nightie for after the surgery, and definitely loose underwear and loose pants for when you go home). It wasn’t my case but many women find that their belly gets to the size of six-month baby bump after an endo surgery, so keep that in mind. That’s because the surgeon needs to pump gas into your abdominal cavity to make it easier to operate on. You can rub yourself with oil several weeks before the surgery to keep your skin moist and supple (I use 100% pure fractionated coconut oil).

You’ll also need comfortable slippers, it’s handy to bring your own pads (I personally almost didn’t bleed but it’s better to have them on hand) and other things that will make the stay more pleasant. I was happy I decided to bring my own blanket, warm socks and my favourite jumper, as well as my little plush toy talisman I held onto all the time for emotional support. I definitely recommend bringing your own drink (e.g. coconut water) to chase away the laxative solution the night before. You probably don’t want to stuff yourself with the pro-inflammatory sugar-laden energy drink the hospital provides. Some more food (maybe some easy-to-digest fruit) can also come in handy, I had a small fridge in the room. The infamous hospital food was the last thing I wanted to put in my body in this fragile post-op state. It’s also a good idea to bring something to distract yourself with the night before, be it a book, an audiobook, a film on your tablet or a diary to write.

12. Don’t forget to prepare mentally, too.

This may be the hardest part. I don’t know anyone who would not be scared before a surgery. It’s only natural. Well, this is my take: You can either suppress the fear, or work with it. I chose the latter and decided to focus on all the good steps I took before the surgery: I chose a renowned hospital and a very skilful surgeon (my surgery took place in Leuven, Belgium). In the five years it took me to decide whether I even wanted a surgery, I managed to get into a wonderful shape and practically became a new person. Just before the surgery, I stepped up my dietary and lifestyle efforts and made it possible for my body to prepare as best as it could.

If you meditate, you can add in positive visualisation or positive affirmations.

It might also help to come up with a project for when the surgery is done and you’re well again. Something that will make you happy. Put your thoughts and effort in it. Come up with new ideas, make preparations, be creative, get supplies. It could be a design for your new balcony garden. Or a holiday with your family or friends. New hairstyle or colour. Or a long-overdue meet-up with your friends. You get the idea. (For me it was writing a real-food guide for women with endometriosis for my Czech blog.) Once you invest your energy into a new project, the surgery will become just a simple reference point. It will be there before you, then the moment will come, it will pass by, and then you can concentrate on getting better and stronger, and completing your project. Yay!

 

This is it, that’s all I did before my endo surgery. I’ll be happy to hear from you! What’s your experience? What suggestions do you have for women who need to have the surgery done? Leave a comment below, or feel free to get in touch with me through my web contact form, or connect with me via my Facebook page Good Vibes – Healing through nutrition!

Never stop hunting for good vibes!

[1] Andrew C. Cook. Stop Endometriosis and Pelvic Pain: What Every Woman and Her Doctor Need to Know. Femsana Press, 2012

[2] Aubree Deimler. From Pain to Peace with Endo: Lessons Learned on the Road to Healing Endometriosis. eISBN: 9781483542546

Note:

This blog has a Czech and an English part. The content is broadly similar, and the mission is definitely the same. Feel free to join my English Facebook page, subscribe to my English newsletter, or find me on Twitter and Pinterest!

 

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