Worried about thickened womb lining (endometrial hyperplasia) and referral after bleeding on HRT

[Tiredhotmess]

For context, I'm 55 years old and have been on continuous HRT for nearly a year. I had an unscheduled bleed about 7 weeks ago, having last had a period prior to going on the HRT. My GP referred me for a transvaginal ultrasound scan, which I had last week, and I got a call the next day telling me my womb lining is thicker than it should be (6mm when it should be 4mm). Now im being referred on a 2WW to gynaecology for further investigations.

Obviously I'm a bit worried about this. Has anyone gone through this before and it's all turned out okay? I've only bled that one time, but it lasted 5 days just like my periods used to do. I don't have any other symptoms other than bloating, but I've always had that and put it down to my IBS.

I never had a time when I didn’t have some bleeding.
Eventually went for a scan which showed some thickening so had a hysteroscopy.
That showed a polyp which was removed an a mirena coil fitted.
The bleeding stopped after a few weeks.

I could have written your post myself with the exception of being 10 years younger. Also bleeding on and off for a few weeks, bloating and pain.
I went private as 2ww was actually going to be 6 months wait.
My womb lining was measured at 6mm too. Consultant advised to wait for nhs appointment as he was not concerned about the lining as even though it was slightly thicker it was smooth and even.
nhs appointment ended up being 4 months from referral and womb lining had thinned right down by then. They had no concerns.
I was given the option of the Mirena coil but I’d had it before and didn’t like it so continuing with the mini pill and HRT.
I also have IBS so still get bloating but the pain has almost disappeared.
I still get the odd spotting but nothing major.
It is so hard to not think about it (hence why I went private but was self funded) but please try not to.

I had this recently. At my referral they did an internal exam and biopsy. It was a bit uncomfortable and I took the local anaesthetic, when offered. I had a Mirena fitted at the same time.

I was glad my husband was there to drive me home, as I felt a bit shaky. I probably would have been ok to drive, after a cup of tea.

I’ve had the all clear but am still having light bleeding. Apparently it can take a few weeks for the endometrium to reduce.

Thank you all, that has reassured me a bit. My GP didn't seem particularly concerned and thinks it's HRT related, but there's always that little worry at the back of my mind.

Another one here with exactly the same story. NHS acted swiftly, scan, hysteroscopy with polyp removal ( not pleasant ) and mirena insertion. My measurement was 9mm. Not cancer and discharged back to GP.
Seems like if the hormones in HRT are not balanced correctly this is what happens.

I had exactly the same as you last year, I ended up having a hysteroscopy and a biopsy done at the same time. Mine came back all clear, my bleeding was put down to hormonal imbalance on my HRT so I have now been put onto x3 progesterone tablets a day. They found large fibroids which caused a lot of my bleeding ( apparently HRT can feed fibroids) and a cyst on my ovary which they are now investigating, they don’t think it is anything sinister but are doing what they call watchful waiting. Most outcomes are the same I’ve been told it’s simply down to hormones, the joys of being a woman. If you have a hysteroscopy take GA if you can, I had mine done with local and wished I had taken the GA option. Good luck x

Thank you. I'm not looking forward to having the hysteroscopy, I must admit, so I will enquire about having it done under GA.

I was investigated as well, and found to have a thickening of the womb. I was told I was a higher risk of womb cancer, having had breast cancer. I was given three options 1) hysteriscopy every six months (to monitor) , 2) hrt , or hysterectomy.

I couldn’t have hrt due to the type of breast cancer I had a few years prior. I did have a couple of hysteriscopies, then thought it probably wasn’t a good idea to have a general anaesthetic every six months (and inconvenient), so went for a hysterectomy.

I found the hysteroscopy completely fine using gas and air.

I've been in hospital recently for this. My consultant said they only worry when the thickening is more than 11mm

If you want the actual stats then you can put all your anonomised info including details of weight etc into AI, ask for links to the stats then follow the links (to double check the stats). I had bleeding for a year (I hadn’t realised I should do something about it) and when I finally mentioned it had tests done and they found thickening of my womb and polyps. The risk of cancer for my situation was around 10% but luckily it was all ok.

I was amazed at how much better I felt once the polyps were removed. I stopped feeling a bit nauseous and felt so much more comfortable.

Not personally but through work I can tell you the vast majority of women referred in your circumstances are fine, and there are a lot of women referred with unexplained bleeding and thickened lining. You may be offered a mirena for the progesterone element of HRT, mirena can also be a treatment for hyperplasia. Try not to worry, easier said than done I know. Fingers crossed all is well for you

I went from the scan to having the hysteroscopy fairly quickly, however, on the day I raised concerns that having a coil fitted in my forties was absolute agony for me, but I was raced through, I felt pressured into agreeing to have it done there and then. The bloke was saying 'well if we defer and wait for another slot that will take such and such time, maybe longer, on the other hand you can be out of here within half an hour if you just have it done today'. I gave in and bitterly regretted it, I found it agony, one male doctor poking and prodding with at least four nurses around me, pray tell why do they need that amount of nurses in the room? I was writhing and moaning in pain, not offered gas and air at all just given two paracetamol beforehand.

That said it is well known that some women are not bothered and don't feel the pain that badly during this procedure, but there are thousands of us left traumatised by it, I was a wreck for weeks after, it was barbaric, I'd rather go through labour again than have that done again.

So, my advice to you is do not wait until the appointment to discuss your options, my referral was really quick, so quick I didn't get the proper letter and info beforehand and walked in not really sure what was going to happen.

After all the pain, and when in recovery with a cup of tea and no biscuits because I have a wheat allergy ! Of course a hospital can't cater for that, I was shaking and in shock, I could hear another woman crying and moaning in the distance, the nurse sat in the room observing me and a few others kept turning the radio up a notch. I'm not sure if they should have let me go, but I just wanted to run as fast as I could away from them. It all took over two hours, not the half hour he promised. It turned out there was nothing much happening, slightly thickened lining and a heart shaped womb was diagnosed.

Been through the same just a couple of months ago. I’m 64, not on HRT and my womb lining was 10mm. Was put on the 2 week pathway and this in itself is worrying, because we are used to long waits on the NHS, being sped through is unnerving. Had the biopsy done - painful, but totally bearable, bled a little bit afterwards. Got the results within 2 weeks and all good, nothing sinister to worry about. It’s perfect normal to be worried, but getting checked out quickly will, in most cases, put your mind at rest.

Had the same thing @Tiredhotmess hyperplasia of 6mm, couple of fibroids and a large polyp which I had removed yesterday under GA I had gone in because of perpetual heavy periods, I’m not on HRT.

Also fast tracked (I am 50) which I thought was a worry at first but glad it is NHS protocol at our age. Had great care from GP and local hospital. I chose not to have mirena fitted at same time as I don’t get on with it and read that simply removing polyp can help - we will see.

Had op at lunchtime, quite painful cramping after the GA which lasted an hour, but lovely nurse stayed next to me whole time and gave me morphine etc,

Recovered on a bed for a couple of hours and went home at 5pm. (you definitely need someone around if you have pain relief as you’ll be woozy)

Hardly any bleeding and no cramping or pain since then & I now wait for biopsy of polyp.

Thought I’d share details to reassure you in case you have the procedure.

I also had a LA for an initial hysteroscopy but polyp was too large/they couldn’t do it, but that procedure was fine: hugs to PP who had unpleasant experience 🫶

You see, this is what I'm worried about - being rushed into making a decision without exploring pain relief options. I find it incredible that, in this day and age, these kind of procedures are still being carried out without sedation or gas and air!

Can you ask the hospital before the appointment? My hospital offers gas and air as standard for these types of procedures. It really varies between hospitals unfortunately. If you're unsure you don't have to make a decision there and then, if you want to come back for another appointment that's fine, just stick to your guns

Thank you. It does seem that women's experiences are quite variable. I'm hoping I'll be one of the lucky ones who doesn't find it too painful 🤞

I’ve found this thread quite helpful, I’m 40 and was diagnosed with hyperplasia when I was 34. It was never fully investigated, although I had a hysteroscopy done privately about 3y ago (fertility investigations). I’ve since had a baby and my symptoms are getting worse. I was referred to gynea and they have booked me an urgent hysteroscopy.

I’m completely petrified. I can barely look at the hospital without feeling ill, I was diagnosed with PTSD after the emergency section I needed for my daughter, and after multiple ivf rounds including an egg collection without sedation, I really don’t know how I’m going to do this. They’ve said I can have gas and air, but even the idea of that is giving me flashbacks to being rushed into theatre. I also have a bicornuate uterus, is a coil even possible with a womb structure/ septum like that?

Im relieved to be reading other peoples experiences of hyperplasia turning out to be ok but everything else is really scaring me. I want to be sick at the idea of being on my back with people poking and prodding in that hospital again.

I was told I needed a hysteroscopy last summer and I had heard so many awful stories that it honestly ruined my summer waiting for the appointment.
I went determined to have a local anaesthetic and I also took paracetamol and ibuprofen about 30 mins before.
The nurse practitioner said I probably wouldn’t need the anaesthetic and we should therefore see how it goes and I reluctantly agreed.
I used gas and air and it was pain free.
I had to have another one for a polyp to be removed and same experience again - pain free.
I had a coil fitted during the second one and I could feel some pressure but nothing really at all.
Such a relief.

Have you been told you’ll definitely have a hysteroscopy? It’s not always done for thickened womb lining- I didn’t have that, just a biopsy.

Stick to your guns, I was horrified that even after saying that having a coil fitted was agony for me personally, I will still railroaded into having the procedure done. I think I expected a 'oh if you found that painful then you might find this painful too'. It's about having choice, once home and feeling able to face googling the procedure and then read up on it, it became very clear to me that one in three women find it excruciatingly painful but the hospital don't tell you any of this, they skirt around the edges implying it's not as bad as that at all, and for two women it isn't, but for the other one woman its agony.
I regret not taking someone with me too, they don't encourage it anyway, but I really wish I'd dragged someone along with me and insisted they could be with me through the initial chat where I was pursuaded to go ahead.

I haven't been told; I just assumed. Maybe I'm jumping the gun a bit then? I'll just wait until I find out, in that case. No point in worrying about something that may not happen, I guess.

I've now got my clinic appointment. It's booked for this Sunday, with possible biopsy on the same day. At least it's come through quick. Will be glad when it's over 😬

I had bleeding on her. Had the scan where they were concerned about thickening. So they did the internal straight after. The thickening was a heart shaped womb. They took a biopsy for completness while they were rummaging. It came back clear. The bleeding has been cleared up with a minor adjustment to my hrt.

Take paracetamol and sanitary towels (for the water used for womb expansion).

Best of luck for Sunday.