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

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.

Hi Marth, you say your womb is atrophic. Im not a doctor but that in itself can cause urinary problems and if it has been like this for a while that could be causing your symptoms. Put your trust in your doctor and if you need more tests or investigations then there will be a reason.  They are covering all bases.  Here if you need to talk. x

Hysteroscopy results from Dec mentioned atrophic womb and now transvaginal saying 12.5mm thickness are these 2 separate things or as my womb gone from one extreme to the other I'm getting confused with it all and googling all sorts 

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 

Hi Marth, I wish I could help but I'm really not sure but I do know that atrophy of the womb/vagina is common in post menopusal women due to hormone changes and these changes can also affect thickness of womb lining.  Hope you get an appointment soon. x

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, 

Thankyou for your help x

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 , 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

Hi Kerry , no results yet went to see consultant last week which didn't go well he never examined me just said oh well you could have another polyp which is making you bleed I explained I'm not bleeding just very runny watery discharge and chronic pain hes booked me in for another hysteroscopy in 2 week under general anesthesia just to check thickness I just hope they biopsy this time my ca125 came back normal but cea was raised so got to have a repeat blood test in 5 week and it's awful the worry I feel for you and we know our bodies and when something isnt right just be good to know what's wrong that's half the battle x

Hello how long have you been going through these tests if you don't mind me asking ? Up to now I've had a colposcopy, got 2 week ASAP appointment because was bleeding after intercourse and irregular bleeding pains in lower back and tummy , and water discharge, sometimes like my waters were trickling like if your water broke slowly, so had biopsy Wednesday but ressurred me it was an erosion and took biopsy just to make sure didn't miss anything, had silver nitrate done , then had a scan thursday and now that's showing up thickening of womb and 10mm wot could be a polyp but not sure ! But need more tests and get back to me next week , and said they don't think it's out sinister but I'm so scared I can't eat sleep ! How can I have both things and symptoms like this , and need test but they think it's not sinister? I want to believe the doctor but I can't get it out my mind ! Till I know for sure ! Thank you for reading scared out my mind won't see my 5 year old grow up 

Hi that's exactly how my symtoms present only bleed after intercourse but otherwise no bleeding whatsoever I am 51 so going through menopause I had what I would call a period at xmas but because I had gone a yr with no bleed they said that wasnt normal so referred to gynae in Dec had hysteroscopy which showed an atrophic womb thin and cracked and dry were his words  which is apparantly normal in post menopause then the pains kicked in around 3 month ago lower left pelvic area radiating around bone area and down leg I thought I had maybe pulled myself then i noticed when the pain is in my womb area it had me to my knees like a knife twisting and what I can describe as the most painful contractions and like you said as if my waters are breaking and the gynae gives me a look when I tell him it's like being in labour with waters breaking thrown in and like yourself they dont seem to worried about it but theyve got to perform anotherr hysteroscopy because of womb lining growing to 12.5mm from a very thin lining and google dont help it always comes up with the C word it scares you silly I did google something called adenomyosis and some  symptoms fit that but because I'm classed as post menopausal and had no symtoms of it before and no longer bleed it's unlikely but if your still having periods I would perhaps if I were you ask them for a laparoscopy to check for things like that because of my age they have just thrown hysterectomy at me try not to worry to much k know it's hard easier said than done I'm also driving myself silly but if the gynae dont seem worried weve got to take comfort in that they see things everyday and tests are just guidlines they have to follow x

I'm 37 and still have periods but they abit all over the spot , it is really worrying, especially when they say they don't think it's out sinister but then want to take biopsy's and tests ! I am waiting on the cervix biopsy but now need one on the 10mm thickness in womb , and wot looks like a polyp! They said ! Scared out my wits as my boy only 5 ! Just strange having both going on at once ! You sound like your having a lot of pain. Mine is just dull aches in tummy and back xx  

I've got dullache all the time like a water infection the horrible pain i get at least once a day just be nice to get to bottom of it at least your gynae is doing all the right tests for you and just hope they give you some answers my scan showed my fibroids had gone just wall thickening and I gained a very small  ovarian cyst so that changed from my previous scan at xmas where fibroids were shown and a thin wall I'll just see what hysteroscopy throws up in 2 week cos last time they couldn't biopsy cos womb was thin etc although he said it looked fine but like you I want to know why it's gone thick and why I'm in pain and it's awful when life throws things like this at you cos you automatically think crap my kids still need me mine are 22 and 25  bless ya it's awful worrying and I had to laugh when you use the word out (owt ) cos that's how I speak x

Hi all,

I am currently waiting for the results of my biopsy... was taken 2 weeks today. I spoke to my consultants secretary yesterday and she said they weren't back as yet :( It's really hard to know whether that's a good thing or a bad thing. As everyone has said, it's the waiting that is the hardest part. 

I am 32, have no children and my consultant is convinced my irregular periods and cycle are down to my weight. Have already started losing weight as he said whatever the outcome that will help going forward. I am really trying to stay positive but it's getting harder the longer I have to wait! 
Thanks for taking the time to read! Xx

Hi , hope all goes well with the biopsy and the waiting must be awful  was it an in office biopsy or hysteroscopy with biopsy  you had and good luck with the weightloss journey x

Hi, thank you for taking the time to reply... it was an in the office biopsy. I had an internal ultrasound the week before and then a smear and swabs the day after the ultrasound! 

Hi , I'm sure you will hear soon i know some hospitals write your results in the letter they send a copy to yourself and gp and usually phone if it's a positive result so fingers crossed this is the case with you but the waiting must be awful for you was the ultrasound ok x