What is recovery anyway?

It’s been a year now since my excision surgery, where endometriosis was removed from my ovaries, utererosacaral ligaments, bowel, bladder, pouch of douglas, peritoneum, and diaphragm. Lot’s of people have been asking for an update about how I’m doing, and I realise it has been a while since I wrote about my own condition, so I thought I’d write this post to update you all and to share some of my thoughts managing the surgical ‘recovery’ process.

recovery

The road to recovery is a long one. There will be obstacles.

I give so many different responses to the question ”So how are you now?”, depending on who is asking- I’ve realised that not everybody needs or even deserves to hear the truth. The honest answer to this question is this: I’m doing OK. Not fantastic, not terrible.

To clarify, I am certainly MUCH better than I was before my surgery, the difference is remarkable. I now no longer have period pain, which is a huge shock and something I never believed was possible for me, having spent 15 years in agony with every single period. As Mr B and I are trying to conceive, I am off the hormones and painkillers , and am managing well, which would not have been possible a year ago. I am actually enjoying being totally drug free, and am still using holistic and dietary techniques to promote my health, along with exercise, which I am really enjoying. This disease has basically turned my into a hippy. Or Gwyneth Paltrow. I’m OK with that.

On the downside, I’ve still been experiencing chronic fatigue since my surgery, which is with me every day and ranges from mild to debilitating. I do have adenomyosis and some other health problems which are likely playing a part in this though, so I don’t see this as any kind of failing from the surgical process. Slightly alarmingly, I have also been experiencing what I think are random diaphragm and endometrioma related pain flare ups again over the last couple of months, but I am just going to track these for a while before I start to panic or take any action.  Another gloomy point, no baby in sight yet, and I haven’t even had any near misses, and that has been getting me down a little bit too sometimes. I know it’s relatively early days in the process though- so I am staying as optimistic as I can. (Funny story though- I went to London Zoo with Mr B recently, and I cried when I saw a stork. New level of crazy right there!)

So, as ever when living with chronic illnesses, there are pros and cons, to my current situation, but I am looking on the bright side about how much progress I have made. Thinking about how far I have come since my surgery a year ago, I started to understand that recovery from a major laparoscopy for endometriosis and the journey back to health is a long one- much greater than the couple of weeks they advise you to take off work. In my view this journey can be helped or hindered by two key factors, which I’ve outlined in greater detail below.

Managing my own expectations:

chronic illness forever
As we all know, there is no cure for endometriosis. While surgery, hormones, or dietary approaches can be useful on their own or in combination, they will not solve the problem completely.

When I see other people sharing their stories online, and through my own advocacy work, I have noticed that many put all their hopes onto a particular approach ‘fixing’ them, in the sense of making them feel exactly like they did before they got really sick.

This makes me worry that they are setting themselves up for disappointment and failure. I am not immune from this myself, for at least a year after being diagnosed I was desperate to work out how I could get back to being my previous healthy self and carry on as though nothing had happened. Eventually I realised this isn’t feasible, my body has changed and I have changed too much. So I gradually started to alter my mindset to focus on how I can become the best and most healthy version of my my new, chronically ill, self.

I’ve found this new approach so liberating and helpful- and it certainly isn’t defeatist if that’s how you’re reading it. It meant that I went into my surgery with positive hopes that it would lessen my symptoms and improve my quality of life, while also being realistic about what it could really achieve in both the short and long term: So when my recovery was hard, and I’ve had flares up, and my endometrioma came back,  and my diaphragm hurts, it was disappointed for sure, but I wasn’t crushed like I used to be.

This new approach to my thinking has also encouraged me to keep striving for health through diet and exercise etc, rather than feeling demotivated and giving up on myself because things will never be as they once were.

Managing the expectations of others:

get well soon
As well as managing your own expectations about what a treatment or approach can feasibly achieve, I have also realised it is just as important, if not more so, to actively manage the expectations of the people around you. No matter how good I have felt about my progress, it has sometimes only taken a small comment from other people to bring me down and lower my confidence. Examples I have experienced have included:

Family member: It’s disappointing you’re still experiencing some these problems isn’t it?!
Friend: How come you’re still feeling bad- do you need another surgery?
Boss: What do you mean you still have fatigue? I thought you had surgery to sort these things out!

Even though I have told people that endometriosis is a chronic and incurable condition, the fact is most people are much more familiar with acute illnesses that get better with treatment, and they will fall back on these experiences to make sense of what you’ve been going through. I mean, people have surgery to fix them right?!

I think if and when I have another laparoscopy, I will work to reinforce realistic expectations of my friends, family, and colleagues during and after the procedure, to improve their understanding and  to limit these comments. Well informed people makes much better cheer-leaders. When people expect that you’re going to be well, or improved, or cured, it is really very difficult to confide in them that your not, and this can increase feelings of loneliness and isolation. It feels like you’re somehow disappointing them or simply not trying hard enough to get better.

Goal setting to aid recovery:

goals
There were a few months after my surgery when I felt frustrated with my progress (well, my perceived lack of) and felt like I was just drifting aimlessly through life without any vision for myself or support. This was really weird for me as I’ve also been a planner and had a strong sense of where I wanted to be. My self confidence was in tatters, as was with fitness and progress on my PhD.

What has really helped to turn this around has been having specific and realistic goals to work towards with regards to my recovery and general health. Over the past year these goals have included: Working on getting leaner, improving my stamina, working to reduce the inflammation in my body, getting pregnant, and finishing my PhD.

The joy of goals is they can be adapted over time depending on your needs and vision for yourself, and they help to develop your sense of purpose and self worth. Without them, the journey to recovery can feel like a never ending road to nowhere.

I would recommend making some short term goals immediately after surgery for the following weeks, and then introducing long terms ones gradually in the months afterwards. The key to success with such an approach is making sure the goals you set are realistic, and that you can identify the steps you are going to take in order to achieve them.

So what exactly recovery is, and to what extent it is possible, I still don’t really know. It’s certainly more than physical healing from surgery and is an ongoing process requiring lost of thought and practice. Like everyone else, I am just trying to do my best in difficult circumstances, and trying to make positive decisions that are right for me.  If you’re feeling lost, or discouraged, on your road to better health, take heart, and take one day at a time. We will get there in the end.

I hope these thoughts are useful to those of you who have had or will be having endometriosis surgery. I would love to know if you have any other tips for aiding recovery and health! And what goals you have for yourself despite endometriosis/chronic illness.

Love, as always,
Claire
xxx

Recovering from a laparoscopy for endometriosis.

Two weeks ago today I had my laparoscopy at UCLH. The surgery lasted for three hours, during which endometriosis was removed from my ovaries, diaphragm, bowel, pouch of douglas, and peritoneum. In addition, my uterosacral ligaments were removed and my ovaries were unstuck from my uterus and peritoneum, and  a large number of adhesions were. Overall this is a positive result, and no unexpected complications occurred for which I was at high risk- such as needing a colostomy bag and/or a second surgery to address my more complex areas of endometriosis. In all honesty the most difficult aspect of my admission was being last on the surgical list and having to wait around all day starving and dehydrating my butt off.

My bowel prep the day before was a whole other story though. I wasn’t that stressed about it beforehand, having undertaken one before when I had a colonoscopy. However, my body does love to troll me, so I spent the entire day before my surgery unexpectedly ‘firing from both ends’ (TMI I know- sorry) in my London hotel bathroom while my parents and husband awkwardly pretended not too hear in the bedroom next door. I don’t know what that was about as I was fine the last time I took one. The hilarious/ironic/awful thing was that the bowel prep didn’t even manage to complete itself as I was still going to the loo constantly throughout the next morning, so I ended up having to have an enema too. Life is so cruel!

Since having my surgery I have been approached by a number of people on endometriosis forums asking me to comment on the quality of care I received at UCLH, which is registered as a BGSE specialist centre, but seems to have a somewhat mixed reputation within the endo community. I have decided to write a more detailed post about this at a later point, once I have had my post surgery follow up with my surgeon, so do keep a lookout for that. For now I will say that overall I was pleased with my care throughout my admission and was impressed by how knowledgeable and compassionate my surgical team and nurses were.

I was well enough to do yet another TERRIBLE post-op selfie. Somebody needs to remove my phone when I'm under the influence of morphine.

I was well enough to do yet another TERRIBLE post-op selfie. Somebody needs to remove my phone when I’m under the influence of morphine.

I’m now recovering at home with the support of my husband and parents. Recovery is a tricky business isn’t it? Nobody ever prepares you for that. It is a given that you are going to be anxious when preparing for surgery, and people respond to this with understandable sympathy, but afterwards it seems like everyone expects you to be ‘fixed’, happy, and to just get on with life again.

I have been feeling slightly on edge because I am so desperate for this surgery to have worked to have some quality of life again. It’s weird because I think with most operations you know very quickly afterwards whether it has been a ‘success’ or not, whereas with endometriosis being a cyclical in nature it’s much more of a waiting game to find out whether the surgery has reduced or eliminated your symptoms. I don’t like waiting games, I am fed up with them now. Mr B and I also want to try for a baby soon, so I am beginning to secretly stress about that too. I’m really scared about whether I will be able to. I’ve never walked down infertility road but it looks a scary place to be from what I’ve read and the people I have talked to who have been there.

Being off work gives you a lot more time to think about these things. Too much time perhaps.I’ve been feeling quite flat, like I don’t know what to do with myself now. It’s like a big anti-climax as you spent so much time and energy focusing on and preparing for the surgery and then suddenly it’s all over.

On this plus side, I think I’ve been recovering really well. My scars are teeny tiny and healing well, I’m in little to no pain, and my family and friends have rallied around me this time so I am feeling really supported. I’ve never been good at relaxing and putting myself first, so that’s what I am going to work on over the coming weeks I think. I am also going to take up yoga when I’m well enough again to get this body as healthy and strong as it can be. Things ARE going to be better from now on I can feel it…they have to be.

I’m happy to answer any specific questions about surgery, bowel prep, or UCLH if you have any, or to hear about your ideas and tips for post-surgical coping and recovery.

Love,

Claire

What’s it like to have a laparoscopy for endometriosis?

During the six weeks or so that I was waiting for my laparoscopy to remove my ovarian cyst and confirm my suspected endometriosis I was literally terrified every day. I had never had any surgery before, and even trips to the dentist make me feel anxious. A lot of crying was done.

Having asked around my family and friends it quickly became clear that nobody I know has ever had a laparoscopy or knows what one is. As pleased as I am about that, I knew that I was very much on my own with this. So, as all twenty-somethings naturally do in my situation, I turned to Google, even though I know this is often a TERRIBLE idea for health related matters. I have had internet search related health meltdowns more times than I care to admit. I once thought I had SARS. Seriously.

So anyway, after lots of searching about what a laparoscopy would be like, I came away disappointed that I was still little better informed than when I started. There doesn’t seem to me to be much written about the procedure in it’s own right, it is usually a minor footnote in people’s wider experiences of gaining an endometriosis diagnosis. I read a lot of forum posts, and these were often horrifying worst case scenarios- or at least, that’s what I had to tell myself that or I’d never have gone through with the surgery. An additional problem was that most of the sites I came across were American, which were helpful to a point, but I know that processes and things can be quite different in the NHS.

I decided that once I was through the laparoscopy, I would write a post about what it was like, to help women in the UK better understand what to expect- before, during, and afterwards. I know that everyone’s experience is unique but I think it is probably helpful for more of us to lay this on the table to demystify the process and help remove the fear. Remember- Knowledge really is power! 😀 I have written this post in Q&A form to address the questions that I felt were important leading up to my laparoscopy, and also what friends and family wanted to know.

Q: How were you prepared for surgery when you arrived at the hospital?

A: When I arrived to hospital (at 7am- that seemed insanely early at the time!) I was quickly seen by a nurse who took my blood pressure, and weight etc. She was very friendly, and I felt able to confide some of my worries to her. She did her best to reassure me, and went to get the anesthetist. He and I had a long chat about what would happen during the surgery- and I think knowing this in detail helped to relax me a lot. After this, I had a short meeting with my surgeon/consultant, where I had the opportunity to ask any final questions. Then I was whisked away, changed into my very flattering and beautiful surgical gear, and was walked over the the operating theater. I remember chatting to a few of the surgical team about the ska band ‘The Specials’ and then shortly afterwards I was asleep! It all went by so quickly, and actually, after weeks of worry I felt very calm on the day as everyone was so supportive and reassuring.

Q: What were your biggest worries about the procedure?

A: These types of worries are very personal. For me, it was mainly the possibility of the anesthetic not working, pain after my surgery, and the risk of having to have a bigger cut made (a laparotomy) if something went wrong. I discussed these worries with my nurse and anesthetist, and I am so glad that I did, even though I felt really daft, because they were excellent at tackling each of my worries and explaining what they would do to manage each of them. My anesthetist actually gave me a really impressive talk on ‘awareness’ during surgery, and why it wouldn’t happen to me, that was very moving both visually and emotionally- I assume he wanted to be an actor but his parents had pressured him to going to medical school.

Q: What was having a general anesthetic like?

A: Quite a surreal experience, but not a horrible one at all. I’d already been given a sedative at this point- presumably because I was ‘quite anxious’- so it was actually quite difficult to stay awake anyway. From my general experiences in hospitals over the past few years, I always recommend taking the sedation if it’s on offer- it is your friend. The anesthetist told me he was putting the anesthetic into the drip he had placed into my hand, and so to open my eyes, and that was the last thing I remember. It wasn’t a general drift to sleep- I was out like a light. After the surgery, I don’t think I had any bad side effects from the anesthetic- such a nausea. However, I was quite drowsy for a couple of days.

Q: How long did the procedure take?

A: From walking over to the operating theater to waking up in the recovery area took three hours.  For me, it felt like three minutes really, but my parents said it felt like three days as they waited in the hospital coffee shop. Time is relative in these matters I think. My surgical team had initially thought my operation would take half that time, but they hadn’t expected to find such widespread endometriosis inside me, and spend a long time documenting and photographing it on my various organs.

Q: How did you feel when you woke up?

A: Very calm. When I first woke up, I felt like I was gently waking up from a good nights sleep. I felt positively sprightly! After a couple of seconds I remembered where I was, and looked around to see a nurse sitting beside me. We had quite a nice chat for 10 minutes, and she assured me that my operation had gone well and that they hadn’t needed to remove my right ovary. She also gave me some oxygen through a tube which went up my nose. Over the 10 minutes, I began to become aware of some pain in my abdomen. If I had to describe it, I would say it was a combination of a muscular ache (similar to the feeling after you’ve done too many sit-ups), and a sharper more stabbing pain where the incisions had been made. I was offered morphine, but said I was happy to try paracetamol and ibuprofen and see how things go. I actually managed fine with that level of pain relief throughout my entire recovery.

Q: What happened during your hospital recovery period?

A: Not much really, once I was wheeled over to the recovery ward. I was mainly just left to rest and chat to my mum and dad. I was on a slight euphoric high I think because I was so pleased that I had got through the surgery OK. I was given some tea and toast, which I really didn’t fancy, but when I started with them they were the best thing ever. Honestly, I think it was miracle toast, because after I had finished it I felt so much better and in less pain. Hurray for toast and the nurses who make it for us! I also needed to go to the loo quite a few times, which I found slightly odd since I was so dehydrated. Mum mum helped me hobble to the bathroom- but it wasn’t really painful, just slightly uncomfortable. They make you check there is no blood in it, as this can indicate problems from the surgery, but mine was all fine.

Q: How were you given your results?

A: After being awake for about an hour, my consultant/ surgeon came to talk to me and my mum. I thought she did a good job of explaining the findings of my surgery in a simple way that I could understand. She also showed me some photographs of my insides which was actually quite cool, although really surreal. I thought my mum was going to faint though when she saw the photos- she is very squeamish.

Q: When were you able to go home?

A: I went home at 3pm, with the help of my parents, around 3 hours after waking up. I was actually quite lively and was able to move around fine. I had dreaded the car journey back home, but that was actually fine too! Just be very wary of where you are placing your seat belt, and maybe take a cushion to help with this.

In your drug addled state, never EVER think it is a good idea to take a post-op selfie. The results will be hideous!

In your drug addled state, never EVER think it is a good idea to take a post-op selfie. The results will be hideous!

Q: How was your post-op recovery?

A: Much easier than I’d anticipated. I’d say I was quite sore for about four days, and after that felt OK, just tireder than usual. I used it as a good excuse to be waited on by my partner and parents! 🙂 I was back to my hardcore boot-camp exercise classes 3 weeks later- which shows how quick your recovery can be.  Emotionally, recovery has been a little bit harder. I was initially ecstatic that I had (finally) received a diagnosis that could explain my symptoms, but after about a week the full implications of having endometriosis began to sink in. I’d definitely recommend talking to friends/ family as much as possible during this time. I bottled it up- and I think it set back my recovery in some respects.

Q: Do you have any tips on aiding recovery?

A:There are a few things I wish I’d know about recovering from a laparoscopy, and here they are:

(1) When you meet with your surgeon after your surgery, have somebody write down what was found- because it is quite hard to remember the details in the coming days/ weeks once the anesthetic has worn off. This information will be useful in working out your aftercare and for visits to your GP.

(2) Rest, rest, rest. Websites, and probably your doctor, seem to make out like you will bounce back from a laparoscopy after a few days. In reality, I found it was about 5 weeks until I was completely back to normal.

(3) Involve friends and family as much as you can, by keeping them updated and letting them keep you company. Trust me, you don’t want to go through this alone.

Q: What are your scars like?

A: Not too bad- they are actually surprisingly tiny. Three months on, my navel looks pretty much back to normal!  They were itchy for a couple of days the week of my surgery, but have been no bother since.

Q: How has your follow up care been?

A: I have been discharged to the care of my GP, who is a lovely and understanding lady. Although I was recommended the Mirena coil, I have decided not to go ahead with this the moment as I weigh up its advantages and disadvantages, and my GP has been quite good at helping me working out what might be a viable alternative. I am giving the pill a try at the moment, and seeing how things go.

So, that was my experience of having a laparoscopy to diagnose endometriosis and remove and ovarian cyst. I do hope this helps, even if it makes things just a bit less scary.  If you have any comments or questions I’d be more than happy to answer them. I could also add them into this blog post if it would be helpful.

Love,
Claire
xxx