Sticky Blood-Hughes Syndrome Support
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Uterus problem

I have been having problems for several years now, my doctor has not been terribly helpful and last year was treating my issues as diverticuar, so I changed my diet. Ended up in A&E taken by ambulance due to terrible pain on left side low down in pelvis. They carried aout an Xray and told me there was no diverticula flare up colon looked normal but i did have fibroids so go and see a gynaecologist.

Went yesterday had an ultra scan and the Radiologist said 'I have never seen anything like it before'! Anyway long and short of it is I have a cavity at top of uterus which is possibly filled with blood, the consultant told me that I have a tilted womb and a heart shaped uterus. Don't think this is really relevant. Anyway my question is does anyone out there with Huges know anything about this or has anyone had this happen to them? The consultant seems to think it is because of being on warfarin that could have been a factor. She does not think it is cancer but is going to do a Hysterocopy on me in near future.

12 Replies

I hope they get to the bottom of this for you. MaryF


First of all I'm sorry you are going through this it must be quite worrying. Please try to not stress too much as sometimes these things don't turn out to be as they seem.

Having a tilted womb is actually quite common and has nothing to do with APS. Also if it is fibroids that as you probably know is also very common. Sometimes things show up on scans that set alarm bells going, I remember years ago I suddenly had bleeding mid month which was something I never had. When I saw my gyny and he examined me I was whisked off for a scan so fast my feet didn't touch the ground and my hubby was summoned from work. I was told I needed emergency surgery for a huge cyst that was about to burst and if I was anywhere other than in a hospital I would be in big trouble. I was also not given answers when asked if it was cancer. After the op my surgeon almost skipped into the room because what he had found was not what he thought as he had been treating me for 5 years and I'd shown no signs of it - endometriosis! That meant no cancer.

So try not to worry, until they have a look you won't know for sure and then hopefully it will be something reasonably easy to deal with. Please keep us updated.


I too have a tilted uterus but apparently it's not uncommon; just a nuisance when they use a speculum.

I have had a few incidences of post menopausal bleeding investigated which is always scary but each time has been clear. Last year my gynae stripped out the lining of my uterus and put in a mirena coil. I wasn't sure I wanted it, but it has completely cured the problem and haven't had any problems since so I'm glad I did. Otherwise I would probably have been facing a hysterectomy by now.

I hope things work out for you - it's the uncertainty that's always the worst. When you get a date for your hysteroscopy don't forget that you need to come off your warfarin or they won't do it. And be prepared for some bleeding afterwards. Best if you can to take your own pads - hospital ones are pretty useless!!!


Thanks Panda60

I actually did have the mirena fitted years ago and it was pretty awful!! I had it taken out in the end.

It is more this cavity filled with blood I am worried about, sounds pretty horrendous, and also I am so much discomfort but at least I know what is causing it.

I think having a tilted womb is common and my sister has one too, also my uterus is heart shaped apparently!! think i am a bit abnormal all over!!

thanks for heads up on pads though I will go prepared. :)


Yes I too have a tilted womb which makes sense as I also have a tilted pelvis – which my OB guessed-and he was right - -that one of my forebears was Amerindian.

Before I went on a gluten-free diet, I had many fibroids and horrendous bleeding. All gone now.

I do hope all of this is diagnosed and treated with as little discomfort and inconvenience as possible. Do let us know how things go.


Thought I'd chime in. I also have a tilted uterus and apparently it's also tiny. My gyn laughed about it last exam. Please keep us posted on what the doc's find. I've been having excrutiating pain the third week of the month which should be my menses but I had an ablation done years ago and don't bleed. Scan showed no evidence of fibroids/endometriosis but gyn is kind of treating me like I do. She doesn't know what's causing the pain.

I wish I could be more helpful to you.


Hi Holley

Well i did read that the cavity could have been caused by my ablation that I had about 10 years ago!!!! Will keep you updated.


I had severe endometriosis from a young age and several laser laporotomies to remove adhesions. As I got older I developed many fibroids. I was always in a lOT of pain, especially in my low back. Finally decided to have a hysterectomy and insisted they take my uterus in one piece due to the robotic morcellation issues goin on. It turned out that in addition to fibroids I also had adenomyosis which is very painful. My uterus weighed over 6 pounds. Thank God no cancer as my mother had both cervical and uterine cancer which is what prompted me to have a full hysterectomy in the first place even though it was dangerous because of the coumadin. Anyway, they had done multiple scans on me and had no idea about the adenomyosis. So I hope they get UT all sorted out and that it's something totally benign. Good luck to you and God Bless.


Thanks ZRHonda I will keep you updated


Sorry you're having issues. I don't want to scare you, but I need to be frank. Most the time a fibroid is no big deal. But sometimes, rarely, it can be an issue. It was mentioned above about NOT allowing the robotic morcellation. Talk to your doctor about getting the fibroids out as you just never know when a rare occurrence might happen. My wife had a fibroid that grew to the size of a bowling ball by the time it was taken out. Thankfully the obgyn had a low suspicion that it could be uterine cancer and did not want to use the robotic morcellation process. Had she done that my wife would have been automatic stage 4. It turned out to be Uterine Leiomyosarcoma. Again, I don't want to alarm you, but it is imperative that as many people as possible know about fibroids and the morcellator.


Thanks Huges comrade

I had not heard of this robotic morcellator!! So defineltely wont be going down that path. My fibroids at present are not very big, biggest being about 3cm so they do not think that that can be causing pain/discomfort. I am going through the menopause although I know that does not mean they will shrink for definate, but my sisters did after menopause, so you never know.


Morcellator used on Dr. Amy Noorchashm and her story. These are the two main people making way in getting the tool banned.


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