Some advice please: Fibroids, high CA125, lots of symptoms

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I'm hoping this is the most appropriate forum for this. I'm looking for any advice people may have. 

I'm 37 and I have had a long history of digestive issues, from the age of 11 (diagnosed with IBS) but managed to mostly resolve this through drastic lifestyle changes about 10 years ago. I still had occasional problems but usually put it down to lapses in my eating. I've always been healthy weight, exercised regularly (weight lifting was my main hoby), don't smoke, very infrequent alcohol use and have built up a good knowledge about nutrition (I'm the collegue who is eating quinnoa and avocado on pizza day!). But around 2 years ago I started having a whole list of health problems. My stomach started 'acting up' which was extreme bloating where I went from a flat stomach to looking like I was 7 months pregnant, with all the swelling from my belly button down, coupled with lower back pain, constipation/diarrhea, fatigue, a rash on my face and just generally feeling awful. I also have progressively had a feeling of pressure/inflamation in my pelvis which can get extremely painful. I get unbareble pain when ovulating but my periods have become lighter and don't cause much pain. My last smear test which was about 8 months ago was extremely painful.

I dismissed my 'stomach' issues as a flare up of IBS but went to the doctor with my face rash, they diagnosed as impitigo at first and put me on several courses of anti biotics and as that didn't help, they started treatment for a herpes type infection but that also didn't help. I continued experiencing fatigue but thought this was because of the medication. Over a year ago my fatigue got extreme, I couldn't work, had awful brain fog and a doctor suggested coeliac disease so I spent a year waiting and undergoing testing for that (bloods and endoscopy), which all came back negative. I was discharged from gastro with a diagnisis of IBS and felt I came to a dead end  with my doctor so I started seeing a nutritionist in October and followed a very restrictive gut healing diet (autoimmune protocol but with low SIBO and FODMAPS) but my symptoms got worse. As it was not resolving, the nutritionist suggested further tests so I went to a doctor I hadn't seen before to request tests for for heliobactor pliori, SIBO and EBV, while there, the doctor asked to examine my abdomen and then suggested I get an ultrasound. She also added on other blood tests to the ones I'd requested but didn't mention this to me. The tests I requested all came back negative but the ultrasound showed that I have a 'bulky retroverted uterus' and 2 fibroids, a 5.1cm arising from posterior uterine wall and 2.6cm from uterine fundus. The other bloods she tested for were CA125 which came back as elevated (75). I was told this is a marker for ovarian cancer but as it wasn't extremely high, she said to run it again a month later. My lymphocyte levels have also been gradually falling and were slightly low. This was on 22nd Dec so I'm sure you can imagine me having a nice relaxed christmas!! The test was done again last week and the resutls are that it's risen again to 120 so I've now been referred urgently to gynocology. 

My fatigue is awful. I can't work and my daily activity is now 5 mins of stretching and a 15 minute walk, some days I can't even manage this. I'm exhausted from just going to the toilet. I have a constant feeling of pressure in my pelvic area and a constant feeling of constipation, even if I have emptied my bowels. I have pain and swelling under my arms and neck. Pain in hips and a strange choking feeling in my throat. I'm naturally terrified that I have ovarian cancer, particualry as this has all been going on about 2 years. 

What I want to know is, can all my problems be explained by having fibroids? As I understand it, mine are not very big so I'm wondering if they can explain my symptoms, patricualrly my fatigue as my periods are not heavy at all. 

Sorry if this is very long and all over the place. I've tried to sumarise as much as possible and my brain is like mush!

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8 Replies

  • Posted

    Hi there

    I just saw your message and wanted to say that I think all those symptoms can all be caused by fibroids. A raised CA125 can also be caused by fibroids. I also had a raised CA125 and worried just as you did. They can cause gastric problems and pelvic pain, constipation and the stress of the worry about what is happening in your body can then have psychological effects. Anxiety affects the body in all sorts of ways. The choking feeling could even be anxiety. I have had the same worry. If your scan shows fibroids then it sounds like that is your diagnosis and you would want to know from the gynaecologist which type of fibroids they are ( from the three types) and the options for removing.  Hysterectomy is not the only option. There are lots of others. Let us know how you get on. There are many ladies on here who will give you advice and information about their experiences. Good luck at your appointment.    

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    • Posted

      Thanks for replying!! I didn't realise there was different types of fibroids. It's good to know that if I'm just looking at treatment for fibroids, hysterectomy isn't the only option. I've not had children and would really like to, so that's another concern for me. 

      You're right, I am pretty anxious just now- just the waiting and not knowing is really difficult. I'm doing lots of things to try help with the psychological side of things (I meditate every day). The throat issue has been around since August which is a long time before I thought there was anything serious going on and hasn't changed when I've been more/less stressed. 

      It is reassuring to hear your opinion that it could all be fibroids. I think because all I've read is that fatigue with fibroids is related to low iron from heavy periods but that doesn't apply to me. 

      Hopefully I won't need to wait too much longer. 

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  • Posted

    Just to confirm I am saying the fibroids can cause gastric problems, pelvic pain and constipation. Some cause heavy periods but some do not. There are three types. Your consultant will advise you which ones you have. Submucosal, intramural and subserosal are the 3.
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  • Posted

    Sorry to hear your situation, its good that you have been urgently referred to gynocology and your consultant will be able to let you know what the diagnosis is and you will be given the appropriate treatement. Fibroids does cause some of the symptons you mention such as fatigue, bloating, pressure, huge stomach, pelvic pain, pain during smear test, pain during ovulation. You will feel much better once you have a professonal diagnosis from your consultant and a treatment plan. Not sure if you are based in the UK, but in the UK anything to do with possible cancer is always given the highest priority, more so than anything to do with fibroids only. Try not to let fear overtake you, maintian the exercise you can, have a good diet and await the results. All the best.
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  • Posted

    Hi Betty I understand how worried you must feel, connecting the words cancer marker with your symptoms and a referral would also send me into a state of worry.

    But, as others have said I do believe the CA125 blood test can be raised with fibroids, endometriosis and somewhere I read that before your period it can be affected too. 

    I have not had the blood test but I have had multiple fibroids diagnosed and am awaiting an appointment to see a gynaecologist.  They were found on an ultrasound which I had because of erratic periods (I am in perimenopause age 45).  I was shocked and scared at first, I didn't even know they were there.  I have had a skin rash, increased urination, pain mid cycle, constipation, bloating and fatigue.  These could be related and they could be the changes in my hormone levels.

    I do know that all the symptoms you mention CAN be related to the fibroids and I believe that fatigue can be due to the fibroids blood supply and not just related to heavy bleeding.  I think symptoms can be related to the position of the fibroids and this is something my appointment will discuss - my symptoms are on and off and am not convinced it isn't hormones in my case, or even ovarian cysts (my ultrasound could not see them due to a big fibroid! sad )

    I really do think your symptoms could be related to the fibroid and with any luck the appointment will come through soon and you will have answers to your questions.  Please read about the CA125 test on the NHS websites and even as it clearly says a raised test is NOT indicative of cancer x

    Are you in the UK?  How long do you have to wait for your appointment.


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    • Posted

      Thanks for app that. It's reassuring to hear you have the exact same symptoms but they're just looking at it being fibroids (which I'm not minimising but it is a less scary thought than cancer).

      I'm not sure of the wait time. I'm in UK and my gp said it would be up to a couple of weeks but possibly sooner as I was referred to gynaecology in early Dec when they find the fibroids and they may take that date as the referral.

      I've just looked back at the ultrasound results and it also says I have a bulky retrograde uterus. It just feels like I'm a mess in there.

      I've been trying to not Google things and look too much online but actually coming on here has really helped. Thank you.

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    • Posted

      You are welcome - I too have the cancer fear going on.  Partly because I just realised I have no idea what is going on in there! No one has mentioned cancer to me, that is in my head smile

      I think I have a retroverted uterus as well - I was told at various times during smears etc.  All this means is that the uterus tips backwards and not forwards and isn't an issue per se and many women have this, but I guess if fibroids are on the outside of the uterus they could cause symptoms from pressure if the uterus is retroverted - this is my personal rationale for my situation.

      I am not sure what bulky means, but again, I think this may be due to the fibroids, they can make the uterus bigger than it usually is eeeek.

      I do completely understand the level of concern and feeling things are a mess.  I try to remember that although this is new to me, it happens to many women and in some ways could be said to be normal.

      Glad you feel a bit better writing here, it does help doesn't it?

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  • Posted

    Hi Bettybetter

    Just chiming in with my 10pence. Like the others, I agree that your symptoms could definitely by a mix of fibroids and anxiety. I also had a high CA level along with problematic fibroids, and I was even bundled off for a biopsy as there was a question of possibly malignancy (but it came back clear!) I certainly wouldn't go spooking yourself by reading up on the internet about the various "worst-case scenarios" until you've actually had your results back and seen the gynae!

    Also, my understanding is that fibroids are more often a problem depending on their whereabouts, rather than their size, eg which organs they're pressing on, whether they're twisting up your uturus etc. So even if the size of them isn't massive, you could well still be having symptoms, even severe symptoms. 

    Anyways, all the best, keep us posted and PLEASE try not to stress yourself out while you're waiting on your results. Stress can be just as harmful to your mind and body as an actual illness.

    HUGS!! Rosie

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