8cm cyst on my ovary - how do you all cope with the pain whilst waiting for surgery?!

[ShropshireLassInPain]

I collapsed at home beginning of June and was admitted with suspected appendicitis (pain is all right sided).

CT scan cleared appendix, but showed a 7cm cyst on my right ovary. Discharged as ‘non-emergent’ as it was not ruptured or infected - given codeine for pain, told I’d be added to the gynae outpatient list.

Luckily, I have private medical insurance through work, and used it to seek treatment from Nuffield Health. Got an appointment for early July, MRI middle of July and results this week. Cyst is still growing, now being just over 8cm, and has written off my ovary and fallopian tube so waiting on removal of it all.

But the pain is just immense. Sacked the codeine off as that caused more issues than it solved. Tramadol worked for a while but maxed out and supplemented with Paracetamol but was still pretty much bed bound. So now on Nefopam with paracetamol top ups.

My question is - how do you cope, mentally, with the pain when there is no set end date to aim for?

Im on an emergency list so just waiting for the call, but this means I have no stated operation date in mind. Could be next week, could be end of September.

My mental health is at an all time low. I can’t be a mum to my 4 year old, I can’t work, I can’t help out around the house.

I’ve been awake in agony since 4am, and so am exhausted.

I feel like I’m losing my mind. Please tell me it’s not just me ‘being a wimp’ and that there is light on the horizon?

Thank you 😔

[ar1497]

Hey lovely, first of all just wanted to say I’m so sorry you’re going through this and you’re in so much pain. You are absolutely not a wimp and you’re doing an amazing job - it’s so hard just sitting and waiting and having to adjust to a “normal” of being in pain. The fact you’re still thinking of your 4 year old when you’re in so much pain is so selfless so you really deserve credit for that. Not having a set date for treatment is so hard.

I haven’t had surgery for my ovarian cysts but have experienced a few ruptures. First thing is to let yourself be in pain and not feel like you just have to ignore it when it’s bad. Your pain is valid and just because you’re experiencing it consistently, it doesn’t make it any less painful. When we’re unwell we sometimes unintentionally force suffering when we experience chronic pain - but that’s what the painkillers are for and they should be used if you need them. As you’ve asked for things that help mentally I’ve stuck with this, but you know your body best so keep doing what you need to with medication.

The things I’ve found helpful have been gentle stretches when I’m not nauseous, even when it’s the last thing I want to do! Trying to keep moving is helpful too - this can just be a slow walk around the block or a potter around the garden if you have one. Nothing dramatic or high impact, but just something to stop the muscles from just going into cramp mode and curling in on themselves. At times it was definitely a bit of a placebo effect - it gave me a reason to get out of bed for a few minutes and that alone felt like an achievement. I avoided any high impact or strenuous exercise as it exacerbated my pain and made me feel sick so if you’re experiencing the same, definitely try and avoid that too. A lot of people struggle with that if they’re very active people and experience guilt over not exercising, but it’s not worth doing if it makes you more unwell.

Sharing how I was feeling with my closest support network helped too. Even though it was a difficult conversation, because they understood more about what I was going through, it felt a lot more validating - and when I didn’t feel well enough to communicate what I needed or how I was feeling, they were now informed enough to understand how to help and what I needed. It’s a little thing, but it takes a lot of the mental load off and gives you some time back to just focus on yourself. Finding time to be with the people who bring you joy will help. Although it can feel daunting to be in a group, if there’s people you trust and you can be a bit quieter but still in their company, it’s a really good low-pressure distraction and just being in the presence of other people can be wonderfully healing

If you’re really struggling day to day and worrying about your mental health, please see your GP. Even though it’s normal to be having these struggles mentally when there’s something so painful which is affecting you physically, you still deserve mental health support and care. Anyone that tells you that “it’ll be fine once you have your surgery” is ignoring how much of a toll this waiting game can take. Please don’t feel like you need to just push through and wait for the surgery. It depends on region, but there will be some self-referral treatment options out that you can use as and when if you’re having a really bad day.

there’s so many things that can help, and I’m not going to tell you to “stay positive” because that doesn’t help anyone! But finding a mantra and sticking to it is helpful too - a little bit of self affirmation can be really helpful for keeping some of the anxieties at bay for a while.

Sending love and I really hope you can have your treatment soon 💜

[635703]

I’m in the same position, as in severe chronic pain and waiting for a surgery date. Nothing has worked and now choosing a laparoscopic hysterectomy and I have never been pregnant. No date given yet. Have to loose 10KG, have an MRI, have a combined HRT patch and have a face to face with The Endo Specialist.

For you, there is an end to this and that’s surgery. So just do one day at a time, 1 hour at a time and go with your body and listen to it.

Sleep when you can, use the pain meds, try to eat nutrient dense foods to keep your strength up. Sitting outside in fresh air and in natural daylight - maybe have a cuppa in the garden for 30 mins? This helps you prepare for sleep. Circadian rhythm is you want to look it up yourself.

I usually have a Netflix show and a book I’m reading on my kindle. My Carers come in twice a day and that’s the only routine I have. Just do the very basics for now. You will get a new normal after surgery. So hang onto that. Even though it’s the hardest of times. Release yourself from Mum guilt and focus on yourself. Lean into friends and family to get you through to surgery, and recovery.

Things like a citrus shower gel to wake me up on a morning help. Lavender for evening bath or shower. And wipes and dry shampoo for awful days. I have a Lavendar oil roller before bed to helps me relax. I feel better if I smell nice. Changing sheets that have been on the line is a lush comfort. Candles help me too and it’s self care in the middle of a living hell. Sounds stupid but it really helps take me out of my negative thoughts. I use bio oil for my stretch marks. It smells lush. I Wear a nice M&S cotton nightie and shower and stay in it most days. Obvs changing in lol 😜 I like Netflix shows that have 6 seasons so I can get to know the characters and it stops my mind spinning downward into a deeper depression. I have antidepressants too. I have a dog and he keeps me going with cuddles and he keeps me going, knowing he relies on me.

I haven’t worked for 3 years and have 2 other chronic illnesses 😱 So it’s super tricky. In the early 00’s I was in a similar position to you. The Gp gave me dicolfenac and fentanyl patches. More recently I have had diclofenac suppositories and they helped me loads. But I can’t take NSAIDS now as I have a bowel illness. Now I take a type of slow releasing morphine in tablets called Zomorph. Opioids are the top of the pain management meds. I can take it and codiene and paracetamol if I am desperate. But these should NEVER be taken together. I am doing this to stay out of A&E as they just deal with catastrophes that are life threatening, essentially. An emergency hysterectomy is probably not a thing and I hate going to A&E as there is little understanding of Endo pain and I don’t want more trauma from Drs tbh.

I have a Medical Psychologist and I have learnt thing like distracting my mind with a book or a tv show. This with the pain meds, I use a heating pad £25 of Amazon and it’s a comfort and I have a TENS machine about £25. Both do not take away the pain but they bring comfort to relax a bit. This helps me.

I honestly was given the best bit of advice. Take the pain meds regularly and stay ahead of the pain. This way, it will not make anxiety spike and will get you to a lesser overall pain level. Which is more manageable. This is what I need, something to help me cope until I get my surgery. I use Field Dr for quality ready meals. Take supplements to support my body.

Look into Magnesium Citrate as it helps muscle relax and can be like a very gentle stool softener and helps with anxiety. I use the solgar magnesium citrate from Amazon and have it before bed. A simple thing like staying hydrated can make us feel so much better. If you are backed up this will make you feel lousy too. So reducing this will help you feel a little better.

You’re not alone 🫂

good vibes from your fellow bed bound and sofa ridden Endo Sister 💛💐💝

[lizzieog]

Is there anyway you can get to travel. The north does have a lack of experts generally even in private care. I had to wait 2 months, but if your health provider allows it, it might be worth travelling. Phone around. A pain for sure, but as more people are going private for speed, the waiting times are longer. Had what you had, a nitemare, and have had further complications from polyps. I Travelled from London to Bath. Wonderful expert, Mrs Qureshi, but always has a waiting list. No one should have this pain.

[ShropshireLassInPain]

I just wanted to send an update and my thanks again to those who commented on my thread.

I had my laparoscopy last week and whilst things didn’t go to plan with completely removing the cyst, they did manage to drain it to relieve the pressure! I’ve been on no pain relief since coming home, which is just IMMENSE!

Bad news is that Lap showed my cyst, ovary, tube, appendix and bowel are all stuck together by Endo to form a giant mass, so i am going to need further surgery. But my case needs to go to MD panel for discussion so we’ll cross that bridge when we get to it.

In the meantime, I’m planning on resuming life, returning to work and acting like I’m 31 again instead of 91!!

Thank you again for support during one of the darkest times of my life so far ❤️