Feeling lost. Any advice appreciated.

[BeeBumble]

Hello.

I hope you are all having a good day.

I am looking for some advice on where I can go from here. I was diagnosed with endo last April and had excision surgery at the same time to remove nodules. This was through a referral from infertility services. I ended up being sent to a private hospital for the procedure because of the backlog. I had some relief from pain for a few months but since then the pain has got worse and worse again. My husband and I eventually stopped trying because I was in too much pain and I went on the contraceptive pill to manage the pain. I had no success with this unfortunately - it just led to breakthrough bleeds and a period every three months that lasted around 24 days and was more unbearable than the alternative. Back off the contraceptive pill and gynaecology can’t offer help because I am “no longer a priority” as I am not ttc.

I am back on 6 cocodamol a day and have to plan my activities around these to be able to function. Two when I arrive at work, two after lunch time, and two when I am home. I try to get to sleep before the wear off. I also use a Mira Pro (tens machine) almost all of the time on my abdomen and use heat to help. I am prescribed 60 cocodamol at a time and I feel like an addict when I phone up, being questioned about “why I need them again already?” until I point out that it is the correct timescale and get a reluctant “oh yeah, okay”. The call always upsets me, despite steeling myself each time ahead of making the call.

I am on my feet all day as I am a teacher, and I love my job so much, but it’s getting harder and harder to work through this pain.

I wish I had the money to just go private but I don’t. I feel low today as I feel stuck and I was wondering what you would do now?

Thank you for your time.

[h0lli3]

Although I can't offer advice as such, just remember you're not alone. Also ttc and given up from pain. I have been prescribed dihydrocodeine which is stronger than codeine I believe. Perhaps ask your GP about that. It can be addictive, so I am told take only when needed rather than everyday. I also have to say Womens physio is a game changer. Just some simple stretches and abdomen massages has helped relieve pain. my muscles have basically contracted themselves so much as a defence mechanism that pain is constant with any movement, and radiates from the pelvis up my back, acrosss my stomach and down one leg. But I am given some stretches I can do whilst just sitting down at work and others to do at home and gradually train my pelvis to loosen up!

[BeeBumble in reply to h0lli3]

Thank you so much for your kind reply. I am sorry about your pain. I will speak to my GP and definitely look into women’s physio - the latter is something I hadn’t thought of, so thanks again.xx

[KM1986]

I'm so sad reading this and sending you a hug 🫂 Not a priority because you're not ttc. That baffles me. You could be in zero pain leading a normal life but because of that you become a priority.

I know how you feel about the pain relief and made to feel like an addict. Its horrible feeling guilty and ashamed for taking medication that gets you through. You wouldn't treat a diabetic that way for ordering insulin. In reality although addiction is a risk, its actually a very low risk. I've had opioids on repeat prescription - dihydracodeine, tramadol and morphine - for 11 years and been fine. They help my pain on bad days.

I hate that everyone thinks on a bad day you're curled up on the couch with a heat pad. In reality, some of us still have to work 50-60 hours a week and need medication to be able to work without passing out from pain.

I would suggest going to your gp and asking for a different pain killer. If you've used the cocodomol responsibly they shouldn't have an issue.

It's horrible being made to feel that way. Good luck x

[BeeBumble in reply to KM1986]

Thank you for your kind words and understanding. It really helps to feel listened to. I will call and speak to my GP again, looking into physio and go from there. Thank you again. Take care.xx