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

It’s two days until my excision surgery- scared much?!

It’s just two days to go until my excision surgery at UCLH! I’m hopeful that the surgery is going to give me some relief and restore some quality of life. Unfortunately this means that tomorrow is the dreaded bowel prep day *sob*.  Having undertaken one before I know what a miserable experience it is.

bowel prep
There are so many conflicting thoughts and emotions rushing through my head at the moment, and everything just feels a bit difficult. It really isn’t easy to be an endo warrior. I never knew it was possible for my brain to be so busy. It is constantly like: Will this work? How much will it hurt? Will they tell me I’ll never have a child? I don’t want to die! I’m not going to die-don’t be stupid! What if the anesthetic doesn’t work? What if they bowel prep doesn’t work? What if you end up with a colostomy? Hey, it’s all worth it in the end if I start feeling better! But what IF I don’t feel better? And so on…

Despite all this ruminating I’m actually feeling quite numb overall and just want to get this whole ordeal over with. It seems that the terror/ excitement / anticipation are all counterbalancing each other.

I’ve also made the big/stupid/brave decision to take some time out of my PhD to get my head and body back into working order again. I won’t return to the office until January, and I am really grateful that I have this opportunity to just relax and focus on myself for once. No more pretending everything is OK. I know I’m lucky to be able to take a break, as this isn’t an option for so many people living with chronic illnesses who desperately need it.

So, I’m off now, but plan to post an update about my surgery experience as soon as I am well enough. Do take care of yourselves in the meantime! 🙂

Love,
Claire
xx