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

Yes i guess you're right GP's are not specialists, but i guess it's just the way they handle the situation. Like yourself, i left the surgery in tears.

I'm now just waiting for my hysteroscopy which is booked for this Friday and then await the biopsy results. Does anyone know how long it takes for biopsy results to come back? Is it 2 weeks?.  Agonising wait!!! 

Hi Abbiie

I hope you're ok. If you dont mind me asking how did the hysteroscopy go.  The reason i am asking is because i have also been told i have a 16mm thick uterine lining and GP told me to expect the worse!  I have been fast tracked for a hyteroscopy booked for this Friday and then i will need to wait for the biopsy results.  Can they say anything after visually just looking during the hysteroscopy ? i guess not, i am just at a loss and looking for answers. I agree the waiting is the most painful.

hi

Niki26 , Daphne1 & all who are reading :-

i am 47 , previous history of numerous health conditions such as CFS / ME / PCOS/  OVERWEIGHT, always had irregular periods, but did not have one ofr over 4 months :-

Had smelly discharge for over 6 months, just though was stress as one parent was seriously ill, had worsening pain in my anus which over a couple of weeks got unmanageable, tried IBS meds with no reduxction of symptoms.  You know your`e own body better than anyone!

i had a ultrasound which showed a polyp and some thickening of the lining of the uterus,

was referred within the two-week time scale, had a hysteroscopy where they could not remove the polyp becos it was too big, uterus lining was thickened and they took a biopsy - just uncomfortable / crampy pain for a couple of minutes whilst sample was taken.

I received a call from the GYNA team on a firday  to go for my results  on the monday ,which was less than two weeks & was fitted in, so i knew it did not sound good, told i had ENDOMETRIAL / WOMB CANCER,

Had key-hole hysterectomy 4 weeks later, was in hosp just overnight, managed on paracetamol as pain relief for one week, was just uncomfortable, not agonising at all.  Whole team were great with me.  I have only 4 very small scars to show for after the surgery

4months down the line i have a few menopausal issues, no pain have had a recent discharge infection which was treaed with antibiotics.  I had great support from the GYNAE TEAM, from the consultant, nursing team, Macmillan specialist nurse.

My womb cancer / endo cancer was caught very early and was lowest grade, surgery was the ONLY treatment i needed.

Your symptoms may be minor, or even non-GYNAE, but youv`e done the right thing by going to your GP, i kept saying to mine that the symptoms were different to what i usually had, it`s not IBS, i was in pain, etc, you know what`s right for your body and what feels different.

hope this helps

take care

Hi Snoopy47 and hello to all in this thread

I am on this pathway too having been recently diagnosed at the end of August. I too had thickened womb lining of 16mm and which led to a diagnosis of stage 1a endometrial cancer. It was a huge shock at the time and at the age of 54 had put my symptoms down to menopause. 

I have had my preop and am now booked in for sugery just inside the target date of 31 days since diagnosis.

snoopy47 - I have a similar history to you and good to hear your experience to date and gives me some comfort for my op which is planned to be open surgery with a total hysterectomy so expect my recovery time to be a bit longer :(

I know this is a forum that we all would rather not be contributing to but it is good to find somewhere that others have had relatable experiences to mine.

As earlier posted I reiterate listen to your own body and don’t dismiss anything unusual for you. I had seen my GP 8 months before diagnosis with my symptoms and was met with a dismissive response and only because I had to go to OOH with pelvic pain that I was encouraged to go back to my GP and insist on further investigation.

Best wishes to you all

Hi everyone

Thank you Snoopy and Tinkabelle.

I have been going to the GP since last year and each time my symtoms were dismissed as menopausal.. I agree please listen to you bodies. 

Well today was the day of my hysteroscopy. I am still in pain and bleeding. Biopsy was taken and she also found a polyp.  Unfortunately she couldnt remove the polyp today as she did not have the equipment.  Si being fast tracked for removal of the polyp within 2 weeks.  Consultant said i would need a GA or spinal anesthetic for the procedure.

The waiting continues, endometrial biopsy done today and then will need to wait for the polyp biopsy.  This is the most angonising bit of the journey.

I am so grateful for these forums. I am seen as the solid supportive person who is always there for everyone else. I am always picking up and supporting others, i cannot break down and talk to them. They all have so much on their plate. :-(

I wish everyone best of luck  on this difficult  journey xx

Hi Niki26

I agree the waiting is the worst part along with the feeling that you’ve somehow missed the point or not being told everything? (In my experience anyway, but then that’s me!) I too am the stalwart of the family and my stance was that whatever the outcome I had to be positive for them. I took some time for me - I work fulltime in quite a high pressured job and am the main breadwinner (just for added pressure :confused: ) so have started to exercise more and eat more healthily so I could get through this. Though at the time I didn’t have anyone else to talk to I felt that to get through this I had to be strong mentally and physically. So be kind to yourself, have a plan and you will get through this and don’t forget that you have a strong team that are working for you in the NHS and that they deal with this every day. 

All the best for good results :) 

After the nurse found a polyp 2 months ago I ended up on the 2 week pathway, where they also found cysts etc.  I never had the GA hysteroscopy and polypectomy I was due to have in the end, the recommendation changed to a full hysterectomy which may well  be by open.  Then I get the biopsy results and take it from there.  I am terrified of having a major op but the last 2 months has been so slow and stressful, and I still don't know if I actually have a malignancy or not, I am hoping it will reduce risk of going through this again as I'm 50 and if they do the ovary removal which was originally the plan, and then find endometrial biopsy not clear I will have to go through it all again!

Hi Snoopy47

I have some of the symptoms you described in your post particularly PCOS, being overweight together with the rectum pain, so am interested if your hysterectomy improved any of these. 

I appreciate it if this is too public arena but would be genuinely interested and if you would rather reply privately that would be good.

 Thanks x

Hi everyone

Thankyou for everyone's feedback

What a whirlwind of emotions. So i have a date for my polpectomym its this Friday 18th of october whch is 2 weeks from the date i had my hyteroscopy.   I phomed up today if they had the result of biopsy, only to be told that that the sample they took during the hysteroscopy was inadequate and now they will take another sample when they remove the poly and put in the mirena. What i cannot understand is that they are adamant that i have all this done under GA. I dont want a GA.  Can they force me to go under GA? I had a polyp removed 5 years ago and i didnt have anything. She said well things have changed since then and we now do them under GA  i have my pre op assesment on wednesday and i will air my views of not wanting a GA.

Waiting game continues!!!!!

I have had remains of one removed under GA as they couldn't see the starting point.  They may have reason, but it's so hard when they don't have time to explain, I ralise hey spend a lot of the discussing and reaching conclusions without us involved, so yes, you have to keep asking qu and persevere  until clear on reasons,  I mean it's us that live with consequences. 

I have had remains of one removed under GA as they couldn't see the starting point.  They may have reason, but it's so hard when they don't have time to explain, I ralise hey spend a lot of the discussing and reaching conclusions without us involved, so yes, you have to keep asking qu and persevere  until clear on reasons,  I mean it's us that live with consequences. 

Thanks daisy. 

How long were you under GA? Did you get to go home the same day. Yes i do understand they may have their reasons but its good to be informed why they are doing things the way they want to  i have so much fear of GA, my mother had difficulty coming round from a small endoscopy procedure when the consultant gave her a GA. So i have my personal reservations against a GA.

I hope you are feeling better after your procedure. I guess we have to wait around 2 weeks for the biopsy results.

Good luckxx

Hi ladies I'd already posted in general before I found this thread

I had scan on Fri afternoon, told I needed a gynaecology referral, was rung by gp as I arrived home asking me to go in on Monday

Went in today to be told they think I have endometrial cancer and am on a 2wk urgent referral for tests. I'm shocked, numb, and I've convinced myself they're wrong and it will all be ok

Reading your experiences has really helped me, I just wondered if the procedures were painful 

hi Sm24

the hysteroscopy was a little uncomfortable, but not painful, there were staff there to hold my hand , reassure etc to get you through it, if it hurts just let them know.

Hope all goes ok, i  had very early stage 1a, earliest detected,  i was lucky enough not to have needed anything other than surgery for a hysterectomy.  

take care & best wishes

Hi snoopy

Thank you for your reply

That's comforting to hear, as an fm sufferer you'd think I'd be used to pain but I'm actually a bit of a baby lol

I'm obviously hoping that the tests come back negative but I'm also prepared for the official diagnosis and hopefully if it is that they've caught it early

Thanks again 

Hi sm24

Similar to yourself, i was fast tracked within 2 weeks of having a scan with possible endometrial cancer. I had a hysteroscopy 2 weeks ago where she saw a polyp and took a biopsy sample. She was unable to remove the polyp and the biopsy sample was not sufficient. So last friday i had another hysteroscopy, the polyp was removed, uterine biopsy taken and mirena coil fitted. I had the option of having a GA or epidural. I really wanted nothing but it was in my best interest to have some sort of anasthetic due to size and location of polyp. The staff were excellent nurses really did look after me and the process was full of mixed emotions but it definetely was not painful. Please dont worry too much about the process its best to have it done and then know what the next plan of action is. The process wasnt too long. 1st hysteroscopy was only 10 mins and the one under epidural was probably around 30 minutes. Everything can be viewed on the monitor  if you wish. You are offered pain relief as well neurofen or paracetamol. I am on co codamol anyway so thats what i took before going into the theatre.

Please feel free to ask any questions. For me its the waiting thats more agonising

Best of Luck

Nikki

Hi Nikki 

Thanks for the reply 

That's reassuring to hear, how did they get in touch with you was it by phone or letter? I'm walking round with my phone glued to my hand scared in case I miss a call 

I hope I'm not waiting too long as I agree it's awful, just want to know when they're going to be and then I can mentally prepare for it

Thanks again 

Sally 

Hi sally

After having my scan i went to the GP for the results, thats when she said possible cancer and then  booked a hystersocopy through the GP system whilst i was sat there. It was fast tracked so i was booked in witihin 7 days. When i had the 1st hysteroscopy i must have been squeezed into a busy clinic because the consultant was jus rushing me, took a sample and confirmed there was a polyp.  She said the hospital would contact me for the 2nd hysteroscopy. 

A week later i got a phone call asking to come in for a pre op assesment for last wednesday and the 2nd hysteroscopy was done friday so within 2 weeks and arranged over the phone.

Yes like you i was glued to the phone. As you can see i am still glued to the phone because i am awaiting my results. No idea how they will feed back to me. Im at work but i just cannot focus, just waiting for the results. Can't even focus on half term activities. I had next week booked off for half term but walking around in a daze at the moment.

Luv nikki xx

Nikki I will keep everything crossed for you, it's no good coming out with all the usual platitudes of try not to worry as that's pointless, i just hope you're not waiting too long

I've just received a letter with a password saying if the clinic haven't rung me by tomorrow I have to ring the clinic, oh well looks like things are moving fast, which is good but scary 

I'm glad I found this forum, it has helped 

Big hug

Sally x

Hi Sally

Thankyou so much. Yes its good to chat to others in the same boat. When i look around me, everyone is so busy in their own world with their own issues. Where as i feel as though i'm in limbo, do not know which direction my life will be going in. 

A friend of mine said her biopsy took 10 working days, and I'm only on day 3 at the moment...........gosh a long wait ahead of me.

5 days after the hysteroscopy i can say i am still experiencing occasional pain in my tummy and still bleeding lightly, which should settle down in the coming days. 

I hope your apppointment comes through today, and if it dosn't please remember to chase them.

 All the best.

Nikki xx

Hi Nikki 

Got my appointment for a week on Thurs, would they be taking the biopsy on that appointment do you think?

Oh I'm dreading the wait for the results, it's going to feel like forever! 

I've only told my immediate family but I feel that I'm the only one that's keeping positive about the tests coming back negative, they're all thinking it's going to be bad news and it's really getting on my nerves! 

Hope you're wait goes quickly 

Sally xx