So confused!

Hello,

A few weeks ago I had a CT scan because I was in so much pain which showed a 2cm x 3cm cyst. The hospital sent me on my way saying that I couldn't be in that much pain especially considering the size of it but they'd do a vaginal ultrasound to follow it up. I've just had it this morning and the woman said she couldn't see anything unusual or even the cyst. I've had endometriosis in the past and had a hysterectomy for suspected adenomyosis (leaving my ovaries) and have been pain free since until a few weeks ago. Now I don't know what to do!! I feel like I must be imagining the pain?

12 Replies

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  • hi. How you feeling? No one else can tell you how much pain you are in and with endometriosis and cysts it's location can have an impact on the pain you are feeling. Have they said what they want to do next? They kept telling me that I had harmless cyst that would go on there own, when I ended up in hospital with the pain I was reassuring told it's my appendicitis after the 5.5 hour I was told I had endometriosis with complex cysts I had no I!

    don't be fobbed off keep mithering till you get taken seriously.

    good luck. Xx

  • Thanks for replying! They thought it was appendicitis with me too! Only ruled that out after 2 days in hospital.

    They just said they'd write to my gp with the results. I'm just confused about why we can't see the cyst now, why I'm still in pain, whether I could have endometriosis again. I think I'm going to try and see the specialist I saw years ago privately xxx

  • hi. They did the same with me I was in for 3 days before they operated I think its a common mistake. Did they say if they saw free flowing fluid? They can burst and its very painful and if that's happened there isn't always much they can see. If your in the position to pay privately I would just for your own peace of mind, we went privately but unfortunately the type of surgery I need is to complex to be done at the private hospital so we're seeing the same specialist but at the NHS hospital he's at.

    good luck with it and I hope your endometriosis hasn't returned. Xx

  • No they didn't say anything about fluid. I think I will go privately, I'm fed up of medical professionals who don't know much about endometriosis! Thanks so much for your help xxx

  • My consultant asked my permission to take pictures of my insides when he was doing my lap because he was full sure he was going to find endo and he wanted me to see that despite countless other consultants telling me otherwise.. it was not all in my head ! I will add that he diagnosed in 15 mins what 10years of others all missed. And that was without any scans. He listened to me to every little detail and symptom and he knew just from that what was wrong. You need to find someone who will listen! This isn't in your head! I often had pain that felt like appendicitis but turned out to be from my bowel having been caught up by fibroids and even thou he couldn't see it my consultant found a cyst on my ovary during surgery.

    If you are in a position to financially or health insurance wise You're best bet is the private consultant. You are quite within your right to request a laparoscopy to investigate if that's what you feel you need also.

    Best of luck with it x

  • Thank you, I think I will go privately. My husbands health insurance is going to cover it luckily. Thank you for replying and convincing me I'm not going crazy!! xxx

  • hi. How you feeling today? Do you live near a bsge centre? We found the specialist and got to see him privately it was a relief to be told the symptoms I was having were typical endometriosis so its well worth taking up the health insurance. Good luck with getting sorted.

    kitteh cat I had to smile about the pictures as I've asked them to take pics to as I want to see it, he's offered to video it out as I was so interested in it! Im sorry you had to wait so long to get something done, how are you since the operation? Xx

  • Hello, not great, the pain was even worse yesterday! I do live near a bsge centre but I think I'm going to see my old specialist privately since he has done my last 3 operations and he is an expert in endometriosis. Can't get an appointment for 2 and a half weeks though!! xxx

  • Sylv, sorry to hear you're suffering but hopefully now you've made the appointment you can get the ball rolling again and finally get some answers x

  • Thank you. Earliest appointment is 1st June so I've got to hold on until then xxx

  • Hi Tilly. I was so surprised when he said about the pictures . Its so rare to find consultants who don't just treat the physical but acknowledge the mental side also. My op was in December and I went back January and he gave me a 3 month Decapectyl injection. Last month was the most pain free I've ever been but over the past couple of weeks it's been increasing again so I've made an appointment to see him on Friday. My endo is very tricky because it's sat on my pudendal nerve and in my bartholins gland. Yah me πŸ˜‚

    Did you have yours yet ? That video sounds so like an amazing idea.

  • Hi. Hope your appointment goes ok today how has the pain been?

    The specialist seemed amused by my interest and it can also be used for training to my hubby thinks I'm bonkers!!

    I got a call on Wednesday to say they are planning to operate the end of May, day before our daughters birthday but hopefully it will bring some relief as I can feel the cysts all the time

    Have you tried any alternative things for the pain?

    Xx

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