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

hi

sorry to jump on this thread. I’ve been looking for endometrial cancer threads. Sorry to hear of your diagnosis. 

So I went to my GP a month or so ago as I had 7 periods in 6 weeks  didn’t think anything of it as I’m 45 and thought maybe I was going through the change.  Had a scan and last week saw the consultant who carried out a biopsy as my endometrial is 16mm.  I’m waiting on my results but I’m kind of thinking I already know what the results will be. Have a hysteroscopy booked for 9th may but consultant said he’d be seeing me a lot sooner if anything comes back.  The not knowing is mentally draining.  

hi abbiie

yes, its tough isn`t it.  At least if things are moving quickly its gonna be treated sooner rather than later.  I think my endometrial was 19mm.  It`s all mentally draining which of course brings on physical symptoms too - i am just so very tired all the time, and hoping that when i have the hysterectomy, all being well by key-hole, that things improve.  My MRI showed no other issues within the pelvis area, but i have rectum pain and just hoping that is  part of the same issue.  Take care, x

hi Snoopy 

I  hope thngs go well with surgery for you. I’m here if you ever fancy a chat. It’s nice to speak to someone who knows what you’re going through. Keep me updated please xx

Hello!

its the waiting - I agree. Had my hysteroscopy last Monday. My appt was an hour and a half late and they ran out of the instruments needed to remove polyps!

Awaiting results of biopsy now - but not clear how I will get results as hospital were so behind on appts on day they said it would either be a phone call, letter or GP! 

I have now been told I have to go in for an op on 3rd May for day surgery to remove polyps from womb and investigate further. To be honest I don’t have a clue what’s going on and so sitting tight until 3rd May and hoping biopsy results come through.

I remain in limbo about what’s going on and the fact the nurse and specialist at my hysteroscopy would not answer my questions just worries me more. I think if I knew what I was dealing with I’d feel more in control.  The waiting goes on  ~ take care everyone. X

hi Laney

it is so hard not knowing. My consultant has been straight with me, explaining everything each step of the way, he’s quite frank but that’s how I want it, can’t bear thinking that he would just sugar coat anything and I then get a massive shock. Would rather be prepared and if it’s bad news then I’m half way to accepting it. Hope your surgery goes well.  Keep in touch please xx 

i had the hysteroscopy done and a week later go a call on the friday afternoon to say the consultant wanted to see me monday, so knew sumthing not right.

I have had good communications from the consultant team, secretary and supportive gynae specialist  Macmillan nurses who are there to speak to in office hours.

I asked the specialist nurses a bit more about whether the op would be key-hole and hey did not reply, i suppose that from when the hysteroscopy , biopsies etc are done things can change the day of surgery. It`s all such a worry, take care, xx

take care, deffo gud to know sumone else knows EXACTLY what i am going through, xx

thank you. It’s certainly helping speaking to you lovely ladies and knowing you’re going/gone through the same thing xxx

Hi ladies

Just found this thread and thought I would add my experience. I’m the other end of the journey from you and have just had my first post treatment follow up where I was told there was no sign of cancer. 

I was diagnosed in April 2018 with endometrial cancer after scans and hysteriscooy. I had keyhole surgery to  remove everything in May 2018 and stayed in hospital overnight. I had a second op to remove lymph nodes in July 2018 again an overnight stay. Fortunately they were clear and I had three sessions of internal radiotherapy in September. If you have any questions please ask and I will answer based on my experience. However everyone’s plan is different and suited to them individually. 

I hope everyone’s journey goes well Hugs to you all.

Sundial

hi sundial

appreciate your repsonse, x

Good to hear that you are doing well

How soon after the surgery were you able to do things like going out - i have a concert with VIP extras , 3 weeks after the surgery date , i will be attending the concert on my own, i know its not a necessity for me to go , bu i enjoy such events and am using it as my goal after surgery.

I also have other medical conditions that may contribute to a longer recovery - ME / CFS / FM, so hoping these don`t cause too many extra issues.

Post -op pain relief is one of my major concerns as the ME / CFS / FM causes chronic pain anyway and  am on maximum pain relief that i can tolerate for that - so wondering how that will go

After the initial key-hole hysterrectomy, how soon was the radiotherapy started, and i respect your privacy here, but did you have any side effects of internal radiotherapy

Am very concerned about `the menopause` symptoms, i am 47 years old and have had random symptoms for approx 6 months, but no proper `period`, 

tks for response and info, its much appreciated

xx

hi sundial

appreciate your repsonse, x

Good to hear that you are doing well

How soon after the surgery were you able to do things like going out - i have a concert with VIP extras , 3 weeks after the surgery date , i will be attending the concert on my own, i know its not a necessity for me to go , bu i enjoy such events and am using it as my goal after surgery.

I also have other medical conditions that may contribute to a longer recovery - ME / CFS / FM, so hoping these don`t cause too many extra issues.

Post -op pain relief is one of my major concerns as the ME / CFS / FM causes chronic pain anyway and  am on maximum pain relief that i can tolerate for that - so wondering how that will go

After the initial key-hole hysterrectomy, how soon was the radiotherapy started, and i respect your privacy here, but did you have any side effects of internal radiotherapy

Am very concerned about `the menopause` symptoms, i am 47 years old and have had random symptoms for approx 6 months, but no proper `period`, 

tks for response and info, its much appreciated

xx

Hi

i recovered pretty quickly. It took me about four weeks to really be back to normal, I still got tired and outings were good but tiring so I made sure I rested the day before and the day after. I had a problem with one of my wounds infecting and had to go back into hospital overnight for IV antibiotics so that slowed me down a bit. I’ve also been type 1 diabetic for 57 years on insulin injections. However I managed to sort that out pretty quickly. I don’t drive so can’t tell you about when you’ll be fit for that so it might be worth considering other transport means if you can. Also a good tip is to do the exercises they recommend and try to walk upright. There is a temptation to lean forward which I did unspwiitingly and it left me with a painful lower back. 

As for pain I suggest you discuss that with your surgeon, I was fortunate in that I had very little pain and paracetamol was enough for the first few days. although I know some people have more pain so it’s worth discussing it, They gave me a spinal injections before the general anaesthetic which I think was intended to reduce pain. It certainly worked in my case.

i had internal radiotherapy which I believe is usuallly carried out at about six weeks after surgery.  Mine was slightly different because I had to have a seconded op. Internal radiotherapy has fewer side effects that re usually temporary. I had a few issues with constipation which was soon remedied, I believe there can be temporary uribary issues but I didn’t get any. The RT itself is painless. I hardly knew anything was being done. However it is a leave your dignity at the door occasion. Lol. It actually sounds far worse than it is.

i had already gone through the menopause so it wasn’t an problem for me. Again discuss it with a specialist nurse. There are meds’ they can give you if you need them, 

Will you see your consultant again before surgery or do you have a specialist nurse contact number? It might be an idea to write down these questions and ask them. I found that they are vary helpful.

I hope everything goes well. Please keep in touch. Don’t hesitate if you have more questions, I’m sending a virtual squeeze from my hand to yours. 

Sundial

I’ve sent you a friend request if you’d rather talk through private message. 

Sundial

sorry Subdial

ive had a break from the internet for a week, I don’t have a friend request. Hope you’re well xx 

I have just recently ( in April 2020) being diagnosed with womb cancer grade 2 endometrial adenocarcinoma and waiting for a hysterectomy.

For years I have had really heavy prolonged bleeding for my periods, I have never had regular periods, and when I did I had about 1/3 periods a year sometimes my periods lasted for months, with my longest one being 4 months, at the time they told me my underactive thyroid was causing them.  In about 2017 my periods completely stopped I thought it was due to early menopause, In 2019 they started up again I assumed it was the ovestin cream I had being prescribed that had caused them to start up, I thought if I stopped using it, they would stop, then in Jan/ beginning Feb 2020 I started a really heavy period, this continue into march and I ended up in the hospital (Heart Attack) I needed a blood transfusion, they asked me a lots of questions and I explained about the heavy bleeding and the history of it, they then decided to do a biopsy, which for me was like having a smear but a little more painful, especially when taking the samples, they did not quite tell me what they were doing, or what they were checking for, so I did not really worry too much, I got a phonecall in the beginning of April asking me to come in and speak to them, (at this point, this is where I got worried) I also had to go in alone (due to covid19) then they dropped the bombshell I had cancer in my womb, introduced me to a Macmillan nurse, I really did not take much in from there, I was in complete shock, and could not really believe what I was hearing, I wished they had let my husband in with me. Since then I've being put on hormone therapy they have said this is to buy time until they can do a hysterectomy, which they are unable to do just yet due to my recent heart attack and being on bloodthinners after they put a stent in my heart and also due to covid 19, they said surgery for me would be far too risky,  they have to work closely with cardiology, I also have other health issues that they have to take into consideration, This past 2 weeks I have had really light bleeding on and off and a feeling like really bad period pains which vary from hour to hour, pain goes through to lower back.

I dont think I would of visited the drs I just assumed it was just related to my underactive Thyroid, my periods had always being really bad, I had seen numerous drs over the years, I had kinda given up, I did not think they could offer anything new to help. If not for the Heart Attack, the cancer would of being much worse before I went to to drs

Good news is the cancer seems to be contained in my womb ( consultants words) but it has highlighted a couple of other areas they going to keep an eye on, there are a few nodules in my lungs ( they going to monitor them for changes I will have another CT scan in 3 months). They spotted something in my left breast, which they think is fibroadenoma, they could not do a biopsy again due to bloodthinners I'm on, but they do not think its anything to be worried about, I'm not so sure I feel the same way they do, I like to know either way.

I am still a little worried/ concerned about leaving the cancer in my womb until its safe to remove it, they said it would be months not weeks before they could remove it, hence the hormone therapy, I just want the cancer removed, it feels wrong leaving it in, and very scary, you worry it going to spread and feel a little paranoid.

Bless ya you have really been through the ringer your on the right track and I'm sure they will call you in when it's safe to operate and oh the nightmare of blood thinners I've been on clopidogrel for 10 yr following a heart procedure 

Same one I'm on too, I think I will have to stop them before they do the hysterectomy, wishing you the best hopefully you will get the information to answer your questions, your pain sounds similar to what I'm now getting, is it possible that an infection got into where they removed the polp?  I would not have a clue about my womb thinkness its never being checked to my knowledge, 

Hi I've had to stop mine 2 week prior surgery before but never stopped them during tooth removal and I was fine no excess bleeding etc should only be on it for a year post surgery  but my consultant decided to keep me on it indefinitely due to them helping my migraines been on it 10 yr now no problems and regards the polyp removal anything is possible with my hospital wishing you well with the hysterectomy and that things get back to normal quickly regards covid x

hi

tks for replying to my story

it must be so very worrying for you not being able to have the surgeries you require due to covid restrictions.

I hope you have faith & trust in you gynae team - i was very fortunate and trusted all my carers / team completely, even now if i have an issue  , 12 months on, i am able to contact them with any concern and they can  advise from there.  Obvioulsy face-to face appts may become much easier  to do with visits etc wearing PPE to go to appts etc - so hope this will ensure you get to see the specialist sooner.

thinking of you

x

Hi , sorry to be a bit of a pain but I'm going out my mind here regards  last post where transvaginal found a 12.5mm thickening my gp did a advice and guidance referal with the consultant that i seen back in Dec who diagnosed atrophic womb after hysteroscopy consultant as got back to gp and he wants to see me urgently the pains I'm experiencing are chronic soreness and pain over my left pelvic bone which can then shift to a dull heaviness almost like a water infection x 10 (I've had water tests no infection ) I get like little electric shock type prickles over pelvic area with a watery clear discharge almost as if water are breaking I also have a feeling of trapped wind in the womb area which I know it's not ive taken that many wind tablets and ibs pills to be sure but my question is can I ask what your symtoms are and should I be worried and I dont mind straightness I would sooner be told straight I hate the waiting game 

Hi I'm going through same symptoms did you find out your results yet worried sick x