So scared

Hi ShazI and welcome to the womb group.

I can read the fear through your post about your symptoms and I can understand it feels a long wait until your appointment, which is always a difficult time for us when we don’t know what’s wrong. 

I can see you’ve had to deal with a lot during your life, but please try not to assume you have womb cancer by trying to diagnose yourself-you haven’t yet had a doctor say they believe you have womb cancer as far as I can understand? Polyps are usually benign, and adenomyosis could also be a reason for your symptoms that’s not cancer.

It’s likely that you will have an internal examination when you go to the gynaecologist, as lesions have been seen on your cervix, and it will be decided there what needs to happen in terms of any further investigations or scans to see what’s wrong. You will be asked questions about your symptoms and what’s been happening and things will go from there. May I ask if your cervical screening is up to date? 

I’ve often seen people in the community diagnose themselves with advanced cancer because of symptoms they’ve been having, but this is when fear has taken over and they assume the worst. I’m sure other ladies in the group will come along and tell you about their experiences and offer you some support as you wait-my cancer was cervical, not womb, and I hope you’ll find that things as not as bad as you are imagining.

I hope you’ll let us know how you get on at your appointment, but in the meantime you are welcome to phone the Macmillan Support line-the number is in my signature, where you could speak to the nurses or other support staff who will listen and help you with your panic.

Sarah xx

Hi, I'm in a similar position, awaiting diagnosis and experiencing daily panic attacks. Like you, my scans and attempted hysteroscopy were difficult due to uncontrollable shaking. Hopefully, the propranolol will start to take the edge off some of your symptoms. I have been given diazepam as I have a low heart rate that makes Propranolol unsuitable.

I find that my mind runs away with me when I'm panicing. It's helpful to try and slow it down. I have various techniques that I use including square breathing, meditation, mindfulness and walking. I create a safe space in my mind and try to empty it of all thoughts just imagining a beautiful, calming environment. At the moment these techniques are less effective than normal but they do still help to take the edge off the panic. I use mantras to challenge my thoughts, reminding myself that they are just thoughts not a reality. I also use diversionary techniques like listening to music, watching netflix or talking with somebody. My concentration is poor and often wanders back to my worries but I just direct it back to watching or listening. I find that this helps me to sleep and gives me a bit of a rest from ruminating.

I also find it helpful to try and take one step at a time. Try not to think about diagnosing yourself, but instead focus on that first appoitment and any questions that you might want to ask. Maybe phone the hospital and ask exactly what will happen at the appoitment and what you can expect. The hospital brought one of my appoitments forward due to the adverse impact of my anxietry, maybe you could also explore that possibility.

I appreciate that none of this is easy, and it doesn't completely eradicate the anxiety but, for me, these things have helped a little. Good luck with your appoitment.

Thank you Sarah 

I don't even want to google the terms from my scan as there are so many and I know they will point to cancer. 

For a start, I'm sure endometrium - "hyperchoic and distended by the presence of at least 1 pr 2 hyperchoic focal lesions containing blood flow. Largest is 8mm and smallest is 4mm. ET 14.9mm, this will include focal endometrial lesions" is not good. Also states although I have normal size shape contour and echotexture of ovaries, there are 2 follicles on one and 3 on the other. 

It states no free fluid and no obvious masses. However its states i had bowel gas as limitations so she might not have seen. But my uterus, although normal shape size contour and "heterogeneous echotexture" (again scared to google), it is anteverted. Again this doesn't sound good to me. Which makes me think adenomyosis can't be possible if uterus is normal size as usually it is enlarged?

I just feel with these findings and along with symptoms and the red spots in cervix, it feels like it is endo c and it has spread. 

My ca125 was 17 but I know this doesn't cover endometrial. My liver function etc is normal but when I was in hospital last week having bad abdomen pains and my BP was elevated, they said my crp was high at 5 and trace blood in urine and another thing begining with n in it which doc suggests uti but I don't have a uti. I have no symptoms of uti. My crp was only 1.1 just two months ago. I have low iron too. All other bloods normal. Seems like things are ramping up and I'm scared that it's gone too far. I've read so many scenarios of people thinking they have adenomyosis or endometriosis and being told it is that only for it to be cancer. 

My smear test 2 years ago was normal but I know they're not 100% plus I know that smears don't detect upper uterus cancers. 

I just have so many thoughts spiralling in my head. Maybe I've had adenomyosis for too long and it's turned sinister as I've read there is a higher risk if left untreated. I'm 43 so know its been a long time untreated. 

My head is spinning. I know I should call instead but I get myself into such a worry when I talk about it openly. 

Thank you for replying though. And thank you for trying to offer reassurance. I feel like I've kind of just accepted it is that now and just waiting on the confirmation. I'm so sad and fearful of what is ahead. Sorry x

Thank you cggg. I'm sorry you're going through similar. I've never been so scared. I wake up in the night thinking its all been a nightmare then it dawns on me. 

Thank you for your advice. I've been out with my kids on days out. Trying to get out and about and trying to eat a bit better. We have been having nights just sleeping on the sofa cushions on the living room floor while watching movies until I fall asleep. It helps a little. 

And thank you for the good luck. I wish you luck in your journey for answers too. Thanks again x

Hi Sazi

From your posts I can see that you are completely overwhelmed by everything that is going on. The whole process is very scary and I know it’s easy to say don’t worry but that is the hardest thing in the world. Please try not to google everything… trust me it just makes the worry worse. Reading test results without having a medical practitioner explaining things is going to make your stress worse and can lead to incorrect conclusions. One thing I can reassure you of is an anteverted uterus is completely normal it just means it’s tilting at an angle nothing to be concerned about. You should try giving the support line a call I’m sure it would be really helpful. In the meantime this group is very supportive with loads of lovely ladies with different experiences who are only too happy to help.

Linda xx

Sorry it should read Shazi 

Hi Shazi

I'm sorry you're going through such a hugely stressful time. I should think most of us on this forum have found waiting a nightmare and have been down some pretty dark paths with our thoughts. I know I got way ahead of myself. I decided to treat diversions as a positive help - it doesn't remove every trace of anxiety but I figured it was a positive thing I was trying to help myself.  The helpline can be a great help I found as it seemed easier to talk to a stranger. 

Hi Shazi

I am sorry to hear that you have been having these symptoms and are worried about cancer. 

I know that it is hard when you have symptoms not to panic and think straight away that it is cancer but your symptoms could well be due to other non cancerous causes. A referral to see a gynaecologist is about finding out what is causing these symptoms, treating them and to rule out more serious causes. Adenomyosis is a benign condition which can lead to pain and heavy bleeding. Polyps are not unusual. 

Focal endometrial lesions could be due to the polyps or having a thickened endometrial lining. (Endometrial hyperplasia) Heterogenous echotexture just means there are different textures in the same area.- so this could be hyperplasia, the adenomyosis or the polyps.

CA125 is used as a useful marker in gynaecological investigations and yours is well in the normal category. 

The blood in the urine and pains could well be due to a UTI- I have had one bad enough to go to hospital and had none of the classic signs. 

I am not trying to dismiss your worries and understand your concerns but trying to show that there may be many different non serious conditions causing these symptoms. If they were concerned about endometrial cancer, then they would likely to have mentioned this. 

Hopefully your appointment with the gynaecologist will be able to offer treatment to your cervix and to offer reassurance and a way forward with your other symptoms. Maybe make a list of questions of all your worries and then ask at the appointment. I have often found this helpful.

We also have the Support Line that you are welcome to call to either just talk things through or to ask the nurses about any medical worries. 

Jane