MRI scan results

I received a letter from the Rheumatologist yesterday regarding my recent MRI scan of hips and pelvis, carried out because of hip pain and stiffness.  The good news is the bones, joints and muscles all look great.  At least, it should be good news but to be honest I’m just left feeling frustrated that I’m in constant pain and so stiff I can’t even bend down to put my socks or shoes on anymore, let alone cut my own toenails, but yet again no reason for my symptoms could be found.

The bad news is I have a “very large” ovarian cyst, which came as a bit of a shock.  It shouldn’t have.  I started having lower right abdominal pain about 15 years ago.  I was convinced then it was either a cyst or endometriosis and asked to be referred to gynae.  I had an ultrasound, where they found a 2cm cyst, which they assured me was cyclical and was never followed up.  Turns out they probably should have, cos the fucker is now BIG (won’t know how big until I’ve heard from Gynae).  I am livid.

At the time they offered me a laparoscopy to check for endometriosis, but they refused to do it under epidural and, as I’m allergic to general anaesthetic, I refused.  Of course I didn’t have my Mast Cell Disease diagnosis then, and all the doctors I told about my drug allergies just thought I was anxious and needed to get over my fears of surgery :-/  I know that’s probably a common story for all you other MCADers out there.

So I’ve lived with 15 years of increasing pain: horrendous pre, during and post period pain; back pain; bowel pain; bladder pain and just general burning all-over pelvic pain.  As no-one could tell me where the pain was coming from I just put it all down to my MCAD and EDS – turns out, nope, huge cyst continuing to grow, pushing my organs out of the way and pressing on all sorts of nerves.  Did I mention I was livid?!

I’m not particularly concerned it’s a cancerous cyst, though of course it’s in the back of my mind, because after all these years it would have killed me by now, but I won’t know what kind of cyst it is until I’ve seen the Gynaecologist.

Surgery is going to be a little scary, though having Googled the situation it appears I can have the cyst removed under epidural just like having a C-section although it involves having to cut me open rather than doing keyhole (if they do keyhole they have to pump you full of gas, which pushes on your lungs, so you have to be knocked out and ventilated).  Of course this means a much longer healing time but that’s just the way the cookie crumbles.  My biggest worry is pain control, though I’m hoping Lidocaine patches will be OK – please don’t suggest drugs of any description, just trust me when I say I’ve tried ’em all and am allergic to the lot, including gabapentin, antidepressants and even acupuncture!

Soooo, we’re not even in 2016 yet and I’m already facing two surgeries – that’s something to look forward to then!

The most annoying part is that having a cyst doesn’t cause your hips to be stiff.  Yes it can cause some localized groin or thigh pain, but nothing like the pain I have in both hips not to mention my sacrum.  But the Rheumy has passed me to to gynae and kind’ve washed his hands of me.  So I’ll have to have the cyst seen to, recover, then ask to be re-referred to him for my hip pain, which is just crazy and means I’ll have my third year of pelvic stiffness, discomfort and increasing disability *big sigh*.

My head is still a bit all-over-the-place from the news but it’s pointless worrying about any of it so I’m not going to and that’s the end of that 😉

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15 thoughts on “MRI scan results

  1. Janice

    Fellow EDS’er here … I had a hysterectomy for a melon sized fibroid mass in April. On the morning of the surgery they tried convincing me to have an epidural instead of a general. The only reason I still had a general was because I’m a woss and didn’t want to be awake 😂 The thing being … They can definitely do your op without general! The other thing that has happened … around 18 weeks after the op I began to get VERY stiff. My hips and back in particular were so stiff I couldn’t put socks on, but before I could palm the floor. I didn’t get why until I twigged I had been given estrogen for my hot flushes. I tested the theory by not using them and bingo it was estrogen! Your symptoms could be a sign your hormones are out of balance 😉

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    1. Jak Post author

      Oh wow, that’s really interesting Janice about the oestrogen – thanks so much for letting me know!

      I have to admit, now I know about the cyst I’m wondering if it’s been adding to my MCAD symptoms which went bonkers all out of the blue about 4 years ago. I put it down to entering peri-menopause due to the oestrogen connection there (mast cells respons to oestrogen), but now I’m wondering if it’s the cyst which has altered my hormones more than the meonpause.

      I’m so glad your surgery went well, which is also reassuring for me. Jak x

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      1. Fiona B

        I am cross for you that you have had this for 15 years and they never followed up the initial findings. The surgery will be awful but hopefully afterwards you may get some improvements across the board healthwise. I am no expert but I think that the oestrogen connection could be significant. Hopefully you wont have to wait too long for your surgery given the circumstances. xx

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        1. Jak Post author

          I’m so sorry Fiona I’ve only just seen your comment, not sure how I missed it. I’ve just received my appt to see the Gynaecologist (Wed 30th Dec) so will know more after Christmas about the size of the cyst and the surgery. Jak x

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  2. kneillbc

    Oh my goodness!! If the cyst is very large, it might just explain your hip pain. A cyst like that could be pushing on all sorts of nerves, or your body could be trying to protect yourself- I know when I had a cyst, bending over was excruciating! If it’s been that long- your brain might be ignoring pelvic pain, so your body goes into protect mode. It’s a long shot…but wouldn’t that be nice??

    I used to get cysts a LOT. Way better since I’ve had kids, which is to be expected. They were small but frequent- and they would burst without warning. One time, I was walking down Robson street (very busy shopping street), and one went on me. It literally took me to my knees. So, here I am curled up on the busiest sidewalk in the city. I was saying “I’m fine….just give me five minutes.” “No, I don’t need an ambulance, it’s just a burst cyst…” At which point the men all took a step back (it was very funny- looked like they rehearsed it), and a woman stepped forward, telling me she was a nurse, and suggesting that she help me to a bench…. She herself had cysts when she was younger, and she was fending off people who thought I needed an ambulance. Now, my cysts were very small, so I knew that I would actually feel much better in minutes, and so did she. My sister had one the size of a grapefruit. It decided to burst while they were doing their pre-op ultrasound- the extra pressure…. They thought they’d have to do surgery anyhow, but they waited a couple days to see- gone completely!

    Having had two c-sections, and multiple ‘keyhole’ surgeries, is there no way to do a keyhole? Recovery is like three days, instead of 6 weeks, lifting nothing more than 10 lbs.. A soup pot weighs a lot more than that. I understand your hesitancy about the general anasthetic, but in the long run it might be a lot easier on yor body. When was the last time you had a general anasthetic? They’ve changed a LOT in the last 10 years- I used to wake up in hell from anasthetic (now I know why), but more recently, no big deal at all. I only feel groggy for an hour or two, instead of days like I used to. Obviously, speak with the surgeon and the anesthetist, the cyst may be too big to be removed laparoscopically, in which case it’s a moot point.

    Just think how much less painful your cycle will be!! No wonder it puts you to bed! Fingers crossed you can get it dealt with sooner than later!!

    Karen

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    1. Jak Post author

      Thanks Karen, I sure hope it improves some of my symptoms having the darn thing removed. If I could do it keyhole believe me I would, but it’s not an option. I’m just immensely thankful they can do it at *all* bearing in mind my drug allergies. Jak x

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  3. d

    Ah shoot Jak, so sorry to hear you are not getting resolution to your existing problems and now have new health problems to deal with! I hope you get some relief soon, you certainly deserve a break!

    d

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  4. Teri

    So sorry to hear of more trouble for you, Jak. Extra maddening for sure with the botched medical care 😦 When I was on an estrogen blocker, post breast cancer, it made all my joints very stiff, so hormones are definitely at play in this arena. Also, hips being a trigger point for fibromyalgia, coupled with the cyst, are probably wreaking all kinds of havoc.

    Maybe in the long run this will bring you some relief, when it’s all said & done. I know the procedure is overwhelming. You’re going to have to dig deep in that barrel of strength you always manage to have and trust you gut (pun intended)! :-} ❤

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  5. Livvy_Sheep

    Another piece of the jigsaw Jak! It’s nuts you’ve had to wait this long. why am I not surprised tho? I’m just sorry they didn’t listen to you sooner. …Understand your drug allergies.. I just wanted to add that even keyhole surgery with eds can mean longer healing time (this is my experience) so it’s not a perfect option either. Hope in the long run that it improves your overall symptom burden and quality of life, even if it’s an unexpected hump in the road. The only other thing that came to mind as I was reading your account about your hip pain, was occult tethered cord… Only because I have eds and been looking into that possible reason for my own hip / pelvis issues.. BUT i know we have to deal with one thing at a time. (Sigh). Wishing you a strong spirit.xxxxxxxx

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    1. Jak Post author

      Thank you! I’ll look into the tethered cord thing – never heard of it. I did wonder about further spinal stenosis, which I had surgery for when I was 16 and I know can be an issue in EDS. Guess I won’t know til I’ve had a full spinal MRI which won’t be done anytime soon :-/ Jak x

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  6. Elizabeth Milo

    What a discovery! How frustrating that nobody looked further into your pain. I can’t believe it requires surgery. I know how scary this must be. Keep us posted on when/where/how this will happen. I’ll be thinking of you!

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