Endo and Fibroids?

Hi all, I am so relieved to find this site as I sit here with my hot water bottle dosed yet again on max ibuprofen and considering taking a co-codamol too as the pain is so bad in my back and hips. I have always had heavy periods and taken it that that is just the way it is for some women. However, the pain has become so much worse in the last 4 years and my periods have gone from heavy to very heavy and protracted - 10 days long or so. To try and help, I went on the progesterone only pill 20 months ago (cerezette) and bled continually from that time. I also had the constant need to pee. Meanwhile, routine blood tests had kept showing traces of blood in my urine the Dr kept saying this was probably due to my bleeding and offered nothing more. I went back as I was worried he was missing something. I was sent for a scan of my urinary tract and they found a large fibroid uterus pressing against my bladder - Again my GP was happy to leave this!! I said I wanted treatment as I was experiencing so much pain and that the pain felt like it was also in my bowel and that I thought I had endo - he said possibly but that a lap wasn't something they would do and that they would treat the fibroids if I really wanted that - He said this could be ibs but reluctantly he sent me for a gyny appointment. The gyny was an awful experience tbh - I had an arrogant non-communicative consultant carry out a surprise hysteroscopy and fit a coil. I was left in shock as I hadn't had any pain relief and I was there alone - He insisted he should do it while i was there to save me coming back. I had to drive myself home shaking. The coil made things even worse, the pain was immense for but the bleeding abated for a few weeks and then started again but more lightly, but still all the time. So less blood, but more pain. He said to come back in 6 months if it hadn't settle. It didn't settle and the brown to red bleeding continued as before without any breaks with cronic pain every 2 weeks and excruciating pain after sex - I felt un-clean, miserable and uncomfortable for 6 months. After the 6 months was up, I contacted the gyny dept again telling them that the coil hadn't settled and they threw me into the system as a routine appointment meaning I had to wait from June to September (their earliest routine apt) to be seen!! I was devastated that I wasn't being taken seriously. I was having contraction level pain by August so my GP put me on norethisterone for the few months while I waited for my Sept appointment. My bleeding stopped after a few days, but I had low level pelvic pain constantly and then the light everyday bleeding started again after a few weeks - My moods were shocking and I didn't feel like myself. I had my gyny apt in September and am now waiting for an embolization for my fibroids - I have a pelvic MRI booked for the 24th November. Here's the thing. I am sure my fibroids are not causing me this pain. I don't think they are helping with my belly size etc, but the pain is in my ovaries and lower back is more like endo. Will an mri show endo - Can I ask them to look for other things - It appears that each apt is specifically only for what you've been sent for ie, in this case fibroids. I'm sick of not knowing what I'm dealing with and now realise i'm going in for a procedure that possibly won't be a solution to this pain and maybe should have opted for a hysterectomy! I'm 44 and have 2 grown up children - I started young. Any advice and opinion on my sysmptoms would be so so welcome ahead of my appointment on the 24th November. Thank you so much. Janey

2 Replies

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  • Hi Janey,

    Firstly, it's your body and only you know how it feels. Speak up and tell whoever is doing your scan where you know the pain is.

    I was treated for IBS for the whole of last year. I went back repeatedly to the gp and told them exactly what was going on and, that in desperation, I had examined myself and felt a lump behind my cervix!

    Eventually I had my scans done privately because I couldn't bear it any longer. As I was paying the bill I wanted control, so told the radiographer what I knew. She was brilliant and found a huge pelvic mass and severe endo. Straight away.

    So do speak up. And if they say that they have a specific thing to look for and that's it, tell them where the pain is, tell them that your gp isn't listening to you, tell them how bloody awful it is! Tell them you know it's not IBS!

    Quote their care motto!

    Drs get it wrong sometimes. They're GENERAL practitioners!

    Ok, rant over! I wish you all the very best in getting this sorted out.

    Cazza 😊

  • Hi Cazza, thank you so much for replying. I'm sorry to hear you've also had similar problems - did you have treatment for the mass? Where did you go for your private treatment? I may have to do the same if this apt isn't successful in helping me. I hear what you're saying though and instead of being relieved and trusting that I'm in good hands, I shall be firm and persistent this time. Wishing you health and again thank you for replying. XxxxxX

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