Fibroids seen with ultrasound but not hysteroscopy

[GemmaZzz]

Has anybody had any experience of this?

I'm 51 and was diagnosed with 4 fibroids last November from an internal ultrasound and then the same was confirmed with an external ultrasound in January. The largest fibroid was 4.5cm but in both cases they said the endometrium didn't seem very thick. This was actually a huge relief for me because I've suffered heavy painful periods for the last 5 years or more.

Yesterday I had a hysteroscopy with a biopsy and the surgeon's notes said he had a good clear view but no sign of fibroids or polyps. Follow up 4 weeks. I mentioned it to a nurse who kindly phoned him and he said the fibroids may have been hidden at the base of the uterus...

I was told prior to surgery a mirena coil might be fitted but that didn't happen either.

I'm just wondering if anyone can offer any insight or advice as to what might be going on please? Could it be adenomyosis?

[Leighdorr]

Hi Gemma, I had the same for several years after suffering with awful periods and hemorrhaging every month, I was told it was several small fibroids in the muscle wall and then a cluster with a bulky uterus and finally after switching from having fibroid artery embolisation to a hysterectomy because I just couldn’t live a normal life from pain and inconvenience it turned out to be a fibroid the size of a small melon and adenomyosis, insist on a MRI scan that’s the best way to get a proper answer then you can decide how to move forward, you haven’t said if you are in constant pain or not but it’s worth getting checked out. I’ve learnt so much, I can’t believe these doctors don’t spot it a mile off with every one have such similar symptoms. I’ve posted an awareness post on my Instagram page about my dyagnosis, feel free to have a read if you have Instagram, I was amazed at how many people suffer unnecessarily with all this technology we have now, good luck but push for a proper answer 💛 Leigh x

Instagram name is @leighdorrington

[GemmaZzz in reply to Leighdorr]

Hi Leigh and thanks so much for sharing. I joined Instagram and read your post. That's a great war wound you have there and I'm glad to see you've won the battle. I hope everything's still improving for you and you're going from strength to strength.

As for me, I'm not in constant pain, but it can be excruciating during period times especially when I'm so swollen up I can't pass wind (sorry for the extra info there). Also, I can't seem to get across how much I'm bleeding. I'm passing huge clots. I've kept a record of all my periods since Jan 18 but when I've told the consultant I can bleed for up to 22 days. Its like its just nothing. Whatever I say just seems to go in one ear and out of the other. Its as if its just incidental to him and I feel like I'm coming across as hysterical or neurotic even though I know I'm level headed. I can't begin to tell you how frustrated I am. And now after the hysteroscopy he says there's nothing to see. I've been left in the dark and I'm thinking well two scans saw fibroids so is there some other sort of mass there? I'm actually thinking the worst. I can't believe he didn't think it worth discussing after the op. I mean, how effin arrogant! Every time I've been to see him his opening line has been we'll get rid of those tags for you and I'm like whaaat? I don't have tags or polyps, I have fibroids! I don't believe he's ever read my notes. I'm angry, frustrated, helpless, its why I came here to see if anyone could shed any light.

So, I'm going to take your advice and insist on an MRI. Up to now I've been very accommodating and allowed the experts to lead but time to be strong and put me first.

Incidentally, I go to a private hospital but under the NHS. I wonder if these doctors bite off more than they can chew. They're too bloody tired to read notes or actually listen to people. They just wing it.

Enough of my moaning drivel. Thanks again Leigh (if you managed to read down this far haha) and sincerely hope everything with you continues to get better. xxx

[Leighdorr in reply to GemmaZzz]

Hi Gemma, it’s like me all over again, the patronizing way the docs play everything down, I can remember emailing my doc once after she sent me a copy of the letter she sent to my GP,

I had to correct her by saying just because you say I have x 10 1cm/2cm fibroid that doesn’t make them less painful because they’re not what you call large!! and how you describe your pain, it’s not normal period pain, it sounds like to me you could have adenomyosis and fibroids especially with the clots, I seen a locum last Dec he got me an urgent appointment as my tummy was huge and so painful and I described the amount of blood loss to him basically it was poring and pouring which I found out accidentally by wearing a pad instead of a tampon it was scary and would be worse when I stood but I know why as the adenomyosis can cause the uterus to change shape and it was causing a blockage right by my cervix so would flood. That locus gave me a prescription for Tranaximic which is for people who have lost limbs and to stop the blood flow!!!! Talk about ignoring the problem. Yes you must push for an MRI and get the consultants secretary’s email, you can nag her to get things moving and don’t let him tell you your appointments are 8/12 weeks time insist on 2 weeks max when you need to go back to see them, that’s what I did, if I didn’t then my original appointment to sign for my op was going to be beginning of Jan and I had a letter to cancel that appointment for 12 April 🙄 so good job I said no I’ve waited 7 weeks to see her I’m not waiting and other 6 weeks so they gave me an appointment on the 12th December which is when we agreed on a hysterectomy. You must keep on and tell them how much pain you’re in and tell them it’s not acceptable to wait anymore, good luck 😉 and yes it’s a big wound but I’d just eaten my first meal after no food for 3 days after the op and my tummy swelled up so not a flattering picture but I hope got my point across ☺️ I’m day 19 post op I and remembered last night that I’ve had no period pain since my op hooray!!!

Don’t get me wrong the pain was bad having the op and I’m sure keyhole would of been easier but I’m getting better every day, bit disappointed with the pain I get when walking sometimes but I’m not a very patient person, good luck Gemma and I hope you get to the bottom of it, please let me know how you get on xx 💛

[GemmaZzz in reply to Leighdorr]

Hi Leigh, hope you're still mending well. I'm jealous of your no periods!! I can't wait for that. My sister's were all mid fifties when they got to menopause and that's 4 years too long for me.

This is just a little update to tell you I got a follow appt for 3rd week of May grrrr. I've phoned the hospital and asked to speak to the consultant's secretary who was really lovely actually. He's away until next week but she'll try and bring the appt forward. In the meantime she'll also ask if there are any drugs I can take in the coming weeks to alleviate the symptoms. You've inspired me to keep at this and bejeez I will!!

I'll let you know what happens. Hope you're taking good care of yourself xxx

[Leighdorr in reply to GemmaZzz]

Hi Gemma sounds like you’re onto it now, good for you 👍 that’s good you’ve got your next appointment it sounds like you’ve got an 8 week appointment which is good it seems they either offer you 4/8/16 so notvto bad but yes let them know you need help with pain and would prefer an earlier appointment. This menopausal thingy us girls have to deal with well i thought it happened to ladies in their 60’s omg how wrong Im just 48 last month and mine started about 3 years ago, but just goes to show!! No one talks about it that’s why I admit to being totally ignorant about the whole subject. I’m wondering if no one talks about it because it’s like a taboo subject I guess it is like the devil has got a hold on us 😂 Thank you for the update Gemma, I’m really pleased you’ve taken my advice 🙌 good luck with your appointment and don’t forget to keep on top of it all & keep me posted xxx