Struggling with day to day life

[Eleanorbargates]

I’ve been diagnosed with endometriosis and have a 10cm cyst on my right ovary. I have been put on a 6 month waiting list for keyhole surgery. Crazy isn’t it. I’ve been signed off work for two weeks as the pain was unbearable. But I know when I go back I “won’t be better,” if anything I will be worse.

My usual day routine is being woken up at 4 - 5am and get up for an hour in pain, fall back to sleep until 9 or 10am. I have to have a nap in the afternoon after lunch as I seem to get so tired, and im in chronic pain after eating dinner. This usually lasts most of the evening and I can’t fall asleep until very late. I have changed my diet but it now doesn’t seem to matter what I eat, I get the pain. Pain when I eat, pain when I need the toilet, pain when I walk around too much, pain when I sit in the car for too long. It’s getting a bit too much now. I help manage a restaurant and the physical demands and long hours needed for that job is proving to be so difficult. I get pain when loading and unloading glass washers, bending down to get into the fridge, carrying heaving plates of food. All of which I’ve told work I cannot do anymore due to this cyst and I now feel useless as that is 95% of my job.

I am in need of some positive inspiration. I asked my GP for stronger pain medication and she said I can only take Ibuprofen for the pain??? Is this right? As it doesn’t cut it at all. 💛

[Christin_a]

Hello.

I'm sorry to hear that you're in pain. I can't give any insight from personal experience of cysts and I've not had any. But your Dr saying you can only take ibuprofen sounds ridiculous considering your signed off work due to pain. Maybe try going to a pharmacy and seeing what they suggest or book an appointment with a different GP and see if they are any more helpful.

[veneerofclass in reply to Christin_a]

Would definitely second this! I know it’s difficult but you may need to keep trying with different gp’s until they help keep your pain under control. Them only suggesting ibuprofen does not sound right at all. Hope you get the help and support you need soon.

[Sos100287]

Hello Eleanor

I am so sorry to hear you are going through this and TRUST ME I empathise!! At that start of my IVF cycle in January they found a 5cm cyst, but still proceeded with the cycle, after my unsuccessful cycle the cyst on my left ovary increased to 15 cm and the pain became unbearable while I was on holiday in July! I went to a and e as soon as I came home and the doc gave me cocodomal and told me it would go away itself! This was completely the wrong advice!!

I then suffered for several more months going through a similar daily routine to yourself, until I got rushed to a and e where they drained the cyst but said I would need to wait on a waiting list for a specialist to remove as this infact would not go away itself! I was then sent for an MRI and was told because of the size of the cyst the extent of the damage was too great and that my ovary would need to be removed along with my fallopian tube as the extent of damage caused had rendered my ovary not only no longer working but in risk of cancer!

I know you were looking for a positive story and I appreciate mines is anything but. However I am writing this from my hospital bed begging that you push this further with your doctor and do not let it get to my stage as there is only 5cm of a difference btw the size of our cysts!!

I hope this helps and send you all my well wishes

S xx

[Eleanorbargates in reply to Sos100287]

Hello, Jesus I can’t believe it took until you being rushed to A&E before they sorted it out and even then so much damage. Wow it grew 10cm in 7 months! And you had to wait basically over a year. That’s disgraceful. I’m sorry you had to go through all that, physically and mentally. I am waiting for blood test results and potential MRI. When I get these done on NHS I might have to go private to get the surgery. I’m in waves of pain, I can’t imagine what it will be like in 6 months. I don’t think I could cope. Was your cyst just on the one ovary? Do you have the all clear on the other? Does cancer cells start to grow on large cysts like that? If untreated? Thank you for sharing I hope you have a minimal pain and resting recovery 🌷

[clareheraty]

Just Ibuprofen?! Thats not right at all. I am on 30/500 cocodamol and this seems to help me a lot, also look into getting prostap injections. I don't know about you but each time I was ovulating it kicked off the pain more. by stopping your ovary from working it may reduce the pain too. I would recommend getting another opinion on your pain relief. good luck x

[Eleanorbargates in reply to clareheraty]

Thank you Clare, yes I’ve been advised to get the injection but I’ve heard mixed stories about it, for some women it didn’t stop the cyst getting bigger at all. Yes during ovulation that pain is unbearable. Did you have the injection? Did it help you? I need to see a different GP I think.

[clareheraty in reply to Eleanorbargates]

Yes i have the injection and I have been better on them. Hope you find the right treatment. Keep taking yourself to A&E if you're not happy. good luck x