Yesterday I learned a valuable lesson

I haven’t had surgery since Christmas 2011 for Endometriosis, and I have been purposely avoiding any further surgery by trying all the treatments under the sun. After that op I had some improvements but these gradually worsened over the past 4 and a bit years.

Yesterday I had my third surgery and I learned to trust myself. Despite going to my previous consultant for help, sometimes in tears, sometimes with my partner. The consultant believed the pain I was experiencing was merely the mirena coil settling. He was not keen to operate and to be honest I wasn’t keen either. This was drummed into me so much, and I had a lot of trust for this consultant that I started to see myself as a false case, no longer with endometriosis but for some reason experiencing severe pain, bowel issues, painful intercourse, fatigue etc because of the mirena?

The consultant who performed my operation yesterday was keen to operate and certain they would find something. I nervously agreed and felt full of fear for months up to the surgery – am I wasting their time? Am I attention seeking? Will this operation be a massive waste? It wasn’t. I woke yesterday from the op and after trying to read my notes on the bed (a very poor attempt due to the anaesthetic – with limited focus or energy!) I asked if endometriosis was found. It was! And what was found looked minimal at first but there was actually a recto-vaginal nodule hidden away. Potentially one was also found by the urethra, that rings a bell but this is from my post-op talk with limited memory.

It’s weird coming away from an operation smiling, but I am just so thankful that I was listened to, supported and treated. I have my confidence back now knowing I wasn’t wrong – I was feeling those symptoms progress for a reason and now it’s being managed!

Apologies if this is a ramble, this is less than 24hrs post op but I felt I needed to get out how I was feeling! If you feel symptoms are progressing and you aren’t getting believed/taken seriously definitely get a second opinion. Your pain is real, and important.

 

Endo-sister love

Becca

 

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Post-op tips

From the journey home, to the first shower or dealing with shoulder pain. Recovering post-op can be hard, but it can be made easier. Here are my top ten tips, I hope they are useful:

  1. A pillow or cushion can be useful for the journey home. If you place it against your stomach before you put on your seat belt, the pressure of a seat belt digging in won’t feel as bad.
  2. If you get the referred shoulder pain from laparoscopy, you may find hot peppermint cordial or peppermint tea beneficial. Peppermint is often recommended for IBS to help with gas pain.
  3. You may also find that if you have shoulder pain that it is worse when lying flat. Gather a few more pillows and adjust to what level is most comfortable for lying down or sleeping.
  4. Be kind to yourself. Each person varies and so does recovery time. Don’t expect yourself to go to work straight away or manage house work. Watch some films, eat your favourite food, ask your family or friends to help out.
  5. Heat can be more soothing than pain relief. Electric heat pads/blankets may be more preferable than hot water bottles as they won’t burn the skin. I find it beneficial to use two heat blankets, one for my lower back and the other for my abdomen.
  6. Wear loose fitting and comfortable clothing. Some trousers could put pressure on the stitches so something loose fitting will avoid any extra pain. Little knickers (ones that fit below the stitches) or Bridget Jones style underwear (that fit above the stitches) may be useful to avoid elastic digging into the wound sites.
  7. Keep topped up with pain relief, it might take a  little while for the pain from surgery to settle, so try to keep up with taking paracetamol at the correct times, or any meds you are prescribed. Be wary of codeine or oramorph because these will give you constipation. If you need to take these meds (I’m someone who does) then it might be worth buying over the counter laxative or asking your doctor to prescribe you one.
  8. Rest and get lots of sleep. You may find that you feel completely exhausted after the surgery, and if you’re anything like me that makes me really emotional! If you feel tired try having a nap, listening to relaxing music (Tycho and The Album Leaf are two of my favourite bands for this), or even setting up an audio book so that you can lie back and listen.
  9. You may find you will bleed for a few days post-op. It may be less painful to wear sanitary towels rather than tampons, I would recommend getting a high absorbency pack and take some to the hospital with you so that you can put one on post-op. Some hospitals may provide you with one after the op.
  10. If, however you feel you are bleeding too much/for too long after the surgery or have severe pain that you can’t control, call your GP and see if you can have a phone appointment or book an emergency/urgent appointment for that day, or if it’s after hours then dial 111. They should hopefully be able to tell you what to expect and if they are worried then they can ask to see you.