Womb (uterus) cancer

A place for people affected by womb cancer (also known as uterus or endometrial cancer) to support one another, ask questions, and share their experiences.

Confused and anxious

Shyness
Posted by

hello everyone, I’m 42 years old and from the age of 23 I’ve had 3 recurring abnormal smear tests resulting in laser treatments, cone biopsy etc. 8 years ago I had many polyps removed from the womb following heavy bleeding. The last year or so my periods have gone crazy again but since November I’ve only had 5 days clear of bleeding, if I’m not having heavy prolonged bleeding then I have constant spotting every single day. I had a smear which came back clear. My go insisted on a 2week referral to have an internal ultrasound but after a 3 week wait I rang up and discovered my go had forgotten to refer me!! On the 4th March I had a womb biopsy performed at the gynaecologist and she explained she’s wanting me to be referred within 2 weeks to hysteroscopy for a camera. Since then I’ve been told there’s a backlog so it’s a 6week plus wait...I’m due for internal ultrasound on 28th March. I’m used to all of these symptoms over the years but the pelvic pain and a feeling of pressure in my pelvis is agonising at times....I’m just confused why I hear things are urgent but then it’s such a wait for things to happen. I lost my Mum to cervical cancer when she was 40 (I was 11)  im worried how my children and husband are going to cope with all of this...im a very private person so only my Husband is aware of what is happening 

Arla
Posted by

Hi shyness,

The waiting is the pits, but unfortunately is something we all have had to go through, my hospital appointment line told me to keep phoning in to see if I could get a cancellation appointment, that cut some time off the wait for me. I went to my doctor in February, had my diagnosis in June and my operation in August. Urgent to us seems like it should be immediately but to the medics it seems to mean within a few weeks. If you need help with your symptoms whilst you wait its worth talking to your gp, mine had a few different pills to offer me whilst I waited. 

90% of people who have a womb biopsy get the all clear so try and take one step at a time but I do know how worrying the wait can be, especially with your family history, it must have you on edge. My advice to keep the worries at bay is to keep busy and distracted doing anything at all that you enjoy.

Womb cancer when found early is really treatable, some women have hormone therapy, I had a hysterectomy to treat mine and that was me. Whatever happens we are here to help you through and the group has a vast range of experiences so someone will usually be able to help.

 Lots of love and please let us know how you are getting on

xxx

Shyness
Posted by

Thank you Arla, it’s so nice to have someone to talk to about these concerns and worries as I don’t want to worry people around me at home. Thanks so much for replying and I promise to keep you updated..what a fantastic site this is.....lots of love xxxxx

Army
Posted by

Hi Shyness 

I'm also waiting for your womb biopsy. And as Arla has said the wait is horrific. 

I'm praying I'm one if the lucky 90% but at the minute it's the worry that's taking over my world and every little symptom I'm putting it down to my womb lining.  

Fingers crossed you get good news soon. 

To me even a hysterectomy is good news at the minute. .

My anxiety is so high and I've no one else to turn to so it's me and my thoughts 

Xxx

Shyness
Posted by

Hello Army, 

i totally understand where you’re coming from as I know worrying will not help in anyway but I feel like it’s all I can think about! It’s awful to have such a big dilemma and not definite answers.

i truly hope you’re going to receive positive news asap. 

The gynaecologist was just completing my biopsy when she said “how do you feel about the possibility of a hysterectomy “ I told her, not a problem to me, if that’s what is suggested then I will have it done. 

I am trying to keep busy but my lower back pain, pelvic pain and bleeding is just constantly reminding me that something is wrong...  

i hope you’re ok Army, I’m not much use to you at the moment but I do understand how you’re feeling....take care xxxxxx

Arla
Posted by

Hey shyness,

i had a mirena coil fitted whilst I waited, I was also prescribed mefanemic acid and the gynaecologist gave me two types of progesterone too, they all helped to reduce, but not stop, my bleeding. I was taking ibuprofen and paracetamol regularly every day too. They also gave me some stronger painkillers for when my adenomyosis (like endometriosis but inside the womb) pain kicked in.  

A hot water bottle was great at easing my back and belly pain. after my hysteroscopy the nurses gave me heated blankets when I was in recovery, that was lovely.

Xxx

NannyAnny
Posted by

Hi Shyness,

Sorry you find yourself here, But its nice to meet someone who had similar problems at a young age!! I am now 74, but can remember having the neck of my womb cauterised at about 23 years old, after a smear test. Unlike you, I had no more problems until my womb cancer at 72. I can't think mine is connected after so long, and yours may not be either.

Take heart in the fact that medicine is coming on by leaps and bounds. My own husband survived throat cancer 13 years ago, whereas my grand father never stood a chance with the same complaint. That was about 50 years later. Radiotherapy had not even been invented!!!

I don't understand why you young women seem to be overlooked. As Arla will tell you, take any cancellations. That may speed things up. Keep your eye on what's happening and NAG them if necessary! I think your children will cope. I was hesitant about showing my 3 year old grand daughter my small scars (Keyhole operation - marvellous). She didn't turn a hair and had to check on it for weeks afterwards!!! She also became more helpful.

All the best xxxxxxx 

Shyness
Posted by

Hi Arla, 

i was prescribed tranexamic acid (I think that’s what they were called) twice, they slowed down the bleeding but didn’t stop it. 

I have a gp appointment on Wednesday morning so I’m hoping that I will be given some type of painkillers because paracetamol and ibuprofen are just not touching it. It feels like a pressure through the pelvic area almost like I want to pop it or push!! 

I think I will be more concerned if they tell me everything looks normal because I know there’s something, I know my own body and something isn’t right. Thank you for the support ladies , take care xxxxx

Shyness
Posted by

Hello Nannyanny, 

thank you so much for your helpful advice...your Grandaughter sounds like the perfect little nurse haha!!  

I will definitely be on the phone starting tomorrow morning to start the nagging process, you’re right, I really do need to because that way I’m going to feel like something is being done. 

I hope you’re doing well...you all are so helpful and kind, thank you!! Xxxx

Arla
Posted by

Hi shyness,

The pushing part sounds similar to my adenomyosis pain, I've never felt pain like it in my life, all I could do was roll around my bed in a ball, mine got better and worse, so it was intense for a half day then would ease off again and come back later. I read online that at its worst it mimics labour pains, contracting the uterus. Since my hysterectomy I've had nothing like that pain again, the pain from the op wasn't even a fraction as bad. 

Did they offer you a mirena coil? It can help on top of the pills.

I hope your gp can help on Wednesday 

xxx

Shyness
Posted by

Hey Arla,

I went to the gp on Wednesday, she gave me naproxen which I’m always wary of since in the past they irritated my stomach lining and caused gallstones in the past , she said until further investigatons at hysteroscopy and internal ultrasound is complete then that’s all she can give me..it’s not taken the pain away, not even slightly! 

I asked if my womb biopsy results were in and she said they were but all she said is your womb is very thickened and probably fibrin thrombi with stromal breakdown. I presume that means the blood loss is a fibroid?? She was a little exasperated at my questions so I decided to just nod and smile and wait until I see the gynaecologist again. 

I hope you’re well and thank you for listening to allowing me to prattle on xxxxx

Army
Posted by

Hi

Its strange  how hospitals work differently.  I started this journey off with an internal from Dr. Then off for an ultrasound and transvaginal scan.  I've not got to wait another 3 weeks to see gnae I'm hopefully assuming this is for the biopsy my Dr has said I need. As my womb is also very thickened.  That's as much as I know that started beginning of Feb. With thecdr appointment.  Nearly two weeks ago since my scan.  

The waiting around and not knowing anything us the worst part.  But at least once your in the hospital system at least your being seen properly.  

Hope you haven't got long to see your gynaecologist so you get some answers .  

I'm not experiencing any real pain just consrant niggles and pressure in pelvis and also constant spotting.  When not bleeding. 

Hope you hear something soon.  Xx

Shyness
Posted by

Hi, 

everybody seems to have procedures in different orders, I’ve noticed it a lot. My DR couldn’t do a pelvic exam because of how heavy my period was the day I went, I have already had womb biopsy on March 4th and my internal scan will be on the 28th of this month but my hysteroscopy isn’t until April 24th.

i haven’t bled at all for the last 5 days but prior to that it’s either heavy and prolonged periods or spotting all of the time. The pressure in the pelvis is terrible, I look a bit swollen too. It’s a dull, heavy dragging pain with a bloated pressure, I hate it. I hope you’re going to hear something soon, the waiting is definitely my worst part in all of this, but, like you say as long as we’re in the system then at least that’s something 

take care xxxxx

Army
Posted by

Hi

I haven't seen a gynecologist as yet.  Am I now thinking my biopsy and hysteroscopy wiint happen until I've seen him. Or will he performed biopsy on the 17th when I go in to see him. 

All this not knowing what's happening us terrible  .  

Xx 

Shyness
Posted by

Hi,

i honestly don’t know, maybe try and get a gp appointment after the weekend to enquire when you will to see a gynaecologist. Sometimes I can’t cope with the uncertainty so I completely understand where you’re coming from, it’s such a stressful time. I truly feel stomach churning anxiety on and off with a million questions in my head.

i wouldn’t like to say either way when you will see a gynaecologist because everyone seems to have a different experience during the investigations to see what’s going on. 

I hope you can get an appointment or advise soon and I will be thinking of you xxxx