Hello!

thank you for responding- we are in the same boat. I am annoyed with myself for not going to GP earlier - I now look at symptoms and so many things should have told me to go to GP and I simply went cause I could not shift a water infection. May I ask what prompted you to go to GP? I had to wait ten days for my scan - but I drove home from that scan and as I walked through front door my GP phoned me to say I was on cancer pathway via NHS - go back on 17th but I cannot fully remember what she told me. I will call tomorrow and see if she will repeat what she told me on Friday.

I am 54 - post menopausal, can remember the GP telling me lining of womb was in excess of 10mm. I did have to call hospital and progress my appt for scan and they had the wrong address for me - apparently hospital has different database to GP!! Letter went to where I lived four years ago! So glad I phoned to find out what was happening. Take care to you too and maybe it’s worth phoning hospital to check your referral is there?

hi laney

Appreciate your reply

I thought my `pains` were part of my ME / CFS, so did not really think they would be anything else, cos got sick of being told ` its the CFS / ME / FM`.  We also had a lot of upset with my dad recently being very ill very quickly and subsequently being diagnosed with leukemia - thankfully all is going well for him at the moment, with monthly check ups etc.  I had pelvic pain, which i put down to pelvic arthritis issues, hip arthirtis etc, but then started with agonising pain in my rectum at the same time as the frontal area.  When pains were bad i had frontal discharge which was pinky, and not pleasant.  I went to GP and had an ultrasound which showed a polylp and thickening of the endometria / womb lining .  Went for hysteroscopy, the polyp was too large to take out in an outpatients setting, so did biopsies.  A week later got a call on a friday aft to see consultant on monday.  Told womb cancer, biopsies `very abnormal` - treatment  needed within a 4 week period.  Went for MRI to see if spread to other pelvic areas , etc, thankfully has not.  Got my pre-op date and pencilled in surgery date - all just one day over the 4 wek period.   Hoping the hysterectomy can be done by key-hole, quicker recovery etc .  Thanks for your response, take care, x

Hiya 

im having my op on 2nd august God willing 

honestly that's all I've been Googling 

but like you say the oncologist didn't think so 

and to be honest they have been honest with me with everything 

I have spoken to an aunt if mine that had this and had her op 10 years ago and she's fine 

I've also spoken to 2 more people today and they had it done a while ago and they're also ok 

I asked my oncologist quite a few times and I'm different ways and his answer was NO 

so I think we need to stop googling 

they told me what stage I was at after I had my mri 

Hi Maazz

 I truly believe we have to trust the oncologists, there is no benefit for them to not tell us the truth even if it is bad news because they then cannot help us or refer us on to other services, in the NHS they also have to follow strict guidelines and protocols, so I do think we need to feel as safe as we can in their hands. I said to myself I wouldn't google, but then at my weak moments I have and I shouldn't. 
my op is on the 28th so just before yours. I hope that you can find a way to cope until then, I do feel like my life is on hold at the moment, but that is largely my own fault because I'm keeping away from everyone , partly because a few friends kids have COVID, or they are teachers and I don't want my op cancelled because I get pinged and partly because I can't face talking about it yet. I do hope you are ok, know that your anxiety is a very natural process, but whatever the outcome you are in the best possible hands and the specialists believe they can help you. I'll be thinking of you xx

He's honestly been so honest with me 

I asked my gyno if I was going to die and he said 

noooo you've got lots of years ahead of you 

let's stay strong 

xxx

They said mine was contained within the womb as well,  they did not stage me until after the operation, I was grade 2 on the biopsy that was back in april 2020, I had to wait until Jan 21 for my operation, I took megace to stop the tumour growing, I think a lot of delays are Covid related, mine was, but it was very worrying knowing it was there, and no idea when they would operate, the relief it was all gone was imense, but even tho I know it's all gone there's always a lingering thought of what if? I assume this will get lesser as time passes. They will keep an eye on you for 2 years after the operation, I'm just coming up to my 6 months check up in the next few days.

Hi Leilani23

How are you doing now ? It must have been hard waiting so long, all of my diagnostic stages have been slightly delayed because of COVID, but nothing like yours, I do hope you feel you are coming out the other side now? How was your recovery after surgery. Like you I won't have staging until after my surgery on the 28 th, I'm struggling to think about anything else at the moment, are you having any further treatment?  

I was the same with worrying before my operation I think it's normal, I do not need any more treatment, I think that they decide if you need further treatment on what they see and the biopsies they take and the results from the washings, they will come through around 2 weeks after your operation the consultant rang me at home and told me mine were good no cancerous cells were detected it was a big relief. The operation was not too bad at all, I thought it would be a lot worse ( I've had 4 C Sections, so the pain was very familiar) the scars are 3 very small ones and your belly button, which shows no scarring, I did get an infection about 3/4 days after the operation, I kinda expected I might I did with all C Sections. I'm slowly feeling less paranoid about everything, still a little worry now and again, but as more time goes by I feel less stressed, it good to be on the otherside. If you any worries or questions feel free to ask, good luck with your operation, I hope it all goes well for you both. I have my 6 month check up tomorrow.

Thanks, Good luck tomorrow, let us know how you get on x

All went well for me, if you don't mind please let me know how you are doing/getting on. Wishing you the best of luck.

Really glad your follow up went well, I hope you are feeling some reassurance. Of course I will let you know how I get on, thanks for asking, it's good to be able to chat to someone who has been through the same thing . Do you mind if I ask you a few questions? Please don't answer if you don't want to. How old are your children, and how did they take it ? My son turned 14 yesterday, I'm finding it really hard thinking I might not be around for him especially as he has ADHD and some sensory and other difficulties so I support him quite a lot. Also had you gone through your menopause, I'm peri menopause, so I'm just wondering how ill feel when my ovaries are removed and menopause fully kicks in? Did you have lymph nodes removed , and if so has lymphodemia been a problem at all? I'm having my sentinel lymph glands removed.

as I say please don't feel you need to reply, but so many thoughts going through my head.

thanks and take care

I have 4 children, 2 boys, aged 22 and 20 2 girls ages 21, and 13, both boys also have ADHD and one also has autism. I was also peri menopause before my operation, night sweats did get a lot worse after the operation, I have since being prescribed clonidine for this and it's working great, overall it's not being too bad, I had no lymph nodes removed.

All my children took it hard, lots of questions that I could not really answer at the time, like with what stage I was, the long wait we went through was very difficult, my son who is autistic kept asking the same questions, and was really worried, but I was honest with them all and told them as much as I could about the situation, Covid did not help as at the time of my diagnosis I had 2 at university 2 hours from home, so it was a very stressful time for those 2,  when I went for all my appointments and surgery because of covid I had to go to them all alone.

I have 4 children, 2 boys, aged 22 and 20 2 girls ages 21, and 13, both boys also have ADHD and one also has autism. I was also peri menopause before my operation, night sweats did get a lot worse after the operation, I have since being prescribed clonidine for this and it's working great, overall it's not being too bad, I had no lymph nodes removed.

All my children took it hard, lots of questions that I could not really answer at the time, like with what stage I was, the long wait we went through was very difficult, my son who is autistic kept asking the same questions, and was really worried, but I was honest with them all and told them as much as I could about the situation, Covid did not help as at the time of my diagnosis I had 2 at university 2 hours from home, so it was a very stressful time for those 2,  when I went for all my appointments and surgery because of covid I had to go to them all alone.

Hi 

Thanks for sharing this, it's helpful for me to have someone to chat to that has been through and is going through something similar to me. I've read back in the post and see you have had a very difficult time , it must have been hard for all of you. My diagnosis also came from being anemic, although clearly not as badly as you! My diagnosis was at the end of lockdown, but still affected by it , every process was delayed , no one could come to my appointments with me, my histology from the biopsies took 5 weeks, I got told I had cancer over the phone because the consultant was isolating and I had my last op cancelled, however I used to work for the nhs for a long time so I know how hard they work, the demands on the service and the processes in place to provide the best possible care, so although this has increased my anxiety I'm also grateful to be getting the care I need. I just hope my operation goes ahead on Wednesday.

I do hope you and your family are feeling less anxious now, I'm sure having them home from uni will be a healing time for all of you.

thanks again for sharing 

I hope all goes well with your operation and recovery, anytime you need to chat feel free, I also added you as a friend too.

Hi guys, 

Sorry to jump this thread. 

On the 23rd of July I was told I have fibroids, a bulky uterus polycystic ovaries that are enlarged and a 15mm thickness of lining. 

My gyne appt was a 2 week wait, yet its not until the 19/08/21 so will be 4 weeks not 2. (Which makes me think the lining will be thicker) 

I have had some terrible oain in my abdomen, level with my belly button. Stabbing on the left side near my hip that was agony, so much so as if a knife had been pushed in and dragged to my belly button area and then my gut opened up.  (Thats how I would describe it.) 

It was so bad that the ambulance rushed me to hospital. Gynocolgy say this pain is completely un-related to my isses and don't need to scan me again as the lead gyno on ward that day told me my ultrasound is not terribly concerning and I dont have cysts or other issues that would cause any pain in the abdomen. 

She sent me to another team to look into it. They scanned me for gallbladder issues and liver and they ruled out that and then reffered me to nuerology? I donno why.  But later I was discharged as they feel it could be bowel issues. (Why they didnt do anything more is beyond me.)

So now I'm still having pain now and again, not as bad though. But I am thinking all kinds. 

I have a couple of questions for you ladies if you know the answers. 

1: I have been told I need a camera to look inside, this is the hysteroscopy. Will this be done on the 19th when I see the gyno as my TVUS has already been done?  In your experiences did you have to wait for another appointment?

2: Did you guys have pain in the belly button and left and right side of the belly button going towards the hips, or was it lower down in the pelvic area? 

Thanks in advance.

Hi 

sorry , I've only just seen your post.How are you doing?

was your appointment for the USS a 2 week wait or your appointment after the scan ? 
my 2ww appointment was after the USS as they saw a mass that didn't look like a fibroid, that they identified as a possible cancer. It took 3 weeks for my appointment because everything is so backlogged at the moment, but he then booked me for a hysteroscopy the following week, I signed the consent at that appointment and had my hysteroscopy as planned. In my are they do the hysteroscopy in the day surgery unit as mine was under GA. I know some are done under local, but I would think  you would know you were having this before the appointment as you would have a letter explaining the procedure and would need to consent.

I didn't have pain like you have experienced, although I had some pain my main symptoms were bleeding related.

I hope this helps and good luck with your appointment x

Hi hun

I had a biopsy without hysteroscopy that caused a bleed for a week which was heavy and clotty. 

I saw my gyne yesterday

I have (had) hyperplasia and endometritis with mild PID 

antibiotics and POP for treatment as my hyperplasia caused by harmone imbalance it was clear of cancer and should have shed now. I go back in Jan for camera in to check for endometriosis. ♡♡

Hi 

Thanks for letting me know how you got on. I'm so pleased it's not cancer, but what a scare ! now you can move forward and onwards. I hope everything clears up and you can forget about it all. 
Take care of yourself , enjoy and celebrate life. xx
 

Hi hun

    I am sorry to read your news, you can always come to me to rant or chat if you want to of course. I can totally understand how nerve wrecking it is and I am always here for you. 

You got this, babe xxx

Thanks so much, I get my staging on 2nd September and to be honest the odd panic has well and truly settled in to put it mildly. 
Thanks for your care and support xx

I've sent you a friend request if you want to keep in touch x

♡ Always, don't mention it sweets. 

Alwaa good listener and a good shoulder. You can always message me privately if you need to. I won't be leaving the platform