Thickened uterine lining - nauseous with worry

Thanks for yoyr replies ladies, i don't know where I'd be without your support! 

Arla - you are so kind to share and explain things.I am really going to try and focus on the positive aspects and i can relate entirety to what you are saying about accepting horror periods as the norm ! I have becime desensitized to what is normal and have to plan my life around bleeding! Which is no good.

Lass thanks so much for your messages and checking up on me. Im so sorry to read about your health struggles, and what you've been through! You're a brave lady to have enough left in reserve to help others! 

I spoke to a lovely nurse from Eve Appeal today, what a fantastic service they offer! She was able to explain a lot more about the condition and whilst she did advise me to speak again to the specialists, she was also broadly in agreement about the hysterectomy due to me told that the likelihood of conceiving was so low. Also as I've had this condition for over 5 years (albeit with no treatment) and in that time its got worse. 

I have spoken to my husbands friend also as he is an oncologist and he said with such push and worry about the results, its not a route anyone goes down lightly and there mist be genuine concern to not try the wait and see progesterone approach. He said that whilst children may be important i have to make an objective decision based on the results and that progesterone regression works for less than half of patients and in some patients without added fertility issues there may be a chance of healthy pregnancy. However the hyperplasia doesn't actually go and at nobody can tell me what is lurking in the depths of the endometrial lining or in the uterus/ovaries. He agreed with the lady from the Eve appeal and said an MRI at this point probably wouldn't show any low level cancer or shadows - the only real test is hysterectomy and biopsy. He feels there's enough concern and bad results to suggest its the only sage option. He also mentioned that if i was overweight and this was a newer condition, there woukd be more scope for regression to work. 

So i will speak to my specialist again and reassure myself once more that this is the right decision. However, i feel like I've been given the answers i need and whilst i haven't got a cancer diagnosis, it seems apparent i will be very lucky if i don't, and i can't live normally if I'm worrying about cancer spreading and whats going on inside. 

lm scared but i feel its my only way forward . My husband agrees and feels that a life with children would be a blessing but a life without me is not woth the sacrifice. Bless him, I'm tearing up writing this. I'm so blessed in other ways and i do need to keep that in the forefront of my mind.  

Xxxxx

Hey Diane,

I'm so pleased that you were able to speak to a couple of people who were able to answer your questions and make things clearer for you. It's so wonderful these services exist for us, and I've no idea where we'd be without them!

Sounds like you have a real plan for moving forwards with then, and I think whatever route is recommended - they're all scary in their own ways. So everything you're currently feeling is totally natural and normal.

The only thing left for me to recommend would be to have a chat with your amazing husband and then specialists about fertility preserving opportunities that might be available to you. Something like freezing your eggs so you could maybe look into a surrogate in the future. I'm afraid that while I know there are techniques out there, I've absolutely 0 idea about the practicality and financial aspect of it all. So it would def be one for discussion with the specialists if it was something you would want to consider.

I will also say that I was told at age 20 that I would probably never conceive naturally, and so would need help. But even then, it might not happen. So at that point I decided that if I ever got to a point where kids were the next step, I would adopt. Kids - in my own opinion - don't need to be biologically yours to be loved by you. So might be something to tuck away in your mind for sometime in the future too.

As for my own health, I just laugh at it now. It feels like I can't walk into a Drs office without getting bad news. So a few of them just call me to tell me what's happened now. Saves me the taxi fare in and out of the office/hospital, and I don't think there's anything they can tell me that will make me lose it and need someone there. Not anymore anyways. But helping others with my story and experiences makes it all that little bit more bearable. Because if me having to go through this..... rubbish, means that someone else is more prepared so they don't have to go through it - then I'll def do it again and again.

Stitches out tomorrow and more vampirism! So I'm hoping the leg starts to feel better with them out! Fingers crossed.

And again, so pleased you seem to have a plan, and one that you're happy with and settled on. It's really nice to see/hear.

Lass

xx

HI Diane,

I’m glad my note helped.  I was really concerned about sexuality after surgery, especially after having to have open surgery but do you know what, the scar is huge but I’m ok with it.  I thought my other half would find it unattractive but he doesn't’.  It’s fine.  It was all in my head.

Fingers crossed that you don’t need radio and chemo but if you do I know how you feel about the hair.  For me that was the toughest part of my treatment.  I ended up biting the bullet and splurging on a custom made human hair wig that looks virtually identical to my old hair.  It’s semi permanent so I go to gym, swim and sleep in it.  The reason I’m mentioning it is that I totally understand the hair thing and there is a solution available.

I’ve posted pics previously so if it comes to that, search under my name and you should be able to find them to have a look.

Fingers tightly crossed for you.

Amanda

x

Hi Diane,

I'm glad that you have a plan of action and some great support to call on. If I haven't already said it (sorry my menopause memory is rubbish) I was convinced I'd breeze through life after my hysterectomy and wouldn't need counselling or get low moods, well I was wrong lol.

So what I'm trying to say is try and get a head start on the emotional side of things by looking for some counselling before your op that you can build on afterwards. 

It really helped me but I had to loose the plot before I asked for help.

My CNS referred me to a local charity for counselling.

Lots of love and please let us know how you get on.

Xxxx

Hey Diane

How are you

Have just come back from holiday -in a much better place.

-i was so stressed out. I am now able to cope with round 2 the lump in my neck.

I saw consultant last week - he

 Is arranging a scan and then I will know what it is. A little anxious But not nearly as much as when I thought it was connected to my womb-So one down one to go.

But So sad to read you have not had good news from your hysteroscopy -i wish you the very best- at least you have a plan to deal with it and all the lovely ladies on here -are right behind you. That is your greatest asset.

I hope all goes well for you and will be checking in to see how you are doing.

Much love 

Mariex

Hi ladies, your stories are inspiring and making me feel quite emotional although I’m feeling emotional all the time at the moment. I just wanted to see how you were all getting on? I am terrified, little bit about me;

i have PCOS had it forever (I’m 31 now) when I was diagnosed at 16 I was just told to come back if I have any trouble conceiving. I have never had regular periods and was never treated for PCOS. No birth control pill, hormones, nothing, just told to lose weight and periods would probably come back to normal. I have yo-yo’d with my weight forever and I am quite overweight atm (about 18 stone) my periods would come back for a while then disappear. For the past year or so I have been having quite regular bleeding but thought it was part of my condition so just got on with it as it wasn’t really heavy mostly spotting. Then I googled... and found that PCOS Can cause thickening of the uterus and increase the risk of uterine cancer. I booked an appointment with the doctor and he referred me to a gynaecologist. I had to wait 6 weeks and within the 6 weeks I started reading more horror stories and have become severely depressed with crippling anxiety to the point where I can’t live my life. I feel like I now have more symptoms although I I don’t know if it’s my anxiety creating a lot of them. I have a little ache occasionally in my tummy and I’m off my food and every little ache or twinge I think “I have cancer and it’s spreading”

i went to the gyno yesterday and she had a good look round said everything looks fine but I had a polyp on my cervix which she thinks has been causing the bleeding, she removed it yester and said I would probs bleed for a week or so. I am bleeding a bit and have a few cramps but the cramps are subsiding. The polyp will be sent off but she said she is t worried and wanted to discharge me but I pushed for a scan so I am booked for a transvaginal ultrasound in 8 weeks!! She said it couldn’t be done sooner as I needed to heal. I am terrified. Still reading stories and still convinced I have something sinister and it’s killing me the fact that I left it so long and did not educate myself about PCOS. I am an absolute wreck and can not cope. I am terrified that I have advanced cancer and that it has spread. 

Hey there Rawdoodles,

First things first, step away from Google. Put it down. Don't go back to it..... have you? Ah ah ah! No. Stop it..... I'm watching you!

Honestly, Google is a great tool, and an amazing invention. However sometimes it can be the absolute worst thing you can do to yourself as you're finding out now.

Right now, you could Google the mole on your arm, that floater in your eye, that weird coloured and textured biggie you picked out of your nose last night, and the odd way your feet smell - and somewhere on Google you will find out that you could have about 20 different types of cancer. So honestly, when you are going through tests it's probably the absolute worst thing you can do to yourself. And don't worry, we've all done it!

We were diagnosed with PCOS within about a year of each other - and back then the advice was very different to what it is now due to medical advancements and just understanding the condition more. So you've not done anything wrong, you just followed the Drs advice. Even if you had looked into it more back at diagnosis, you'd not have found out any more than you were told. And there'd be absolutely no reason to continually research it, unless you started having problems - which hasn't happened until recently. So if there's any guilt there over this, show it the door and boot it out swiftly.

So, now on to the thoughts that you have cancer that's spreading. What is it that makes you think this?

A qualified and experienced Dr has had a good poke around and looked at everything, and has even given you a cause for the problems you were experiencing. So what is it that's telling you for 100% that she's wrong? Because if the ultrasound comes back as showing everything being clear, will that be enough for you?

It always helps to play the "Why Game", with these sorts of things I find. You have a worry, or a strong emotion - ask why. Then whatever the answer is, ask why. And so on until you find the root cause of the issue, or realise that there is no reason for the worry/emotion, because there is no logical why.

Hope that helps!

Lass

Xx

Hi Lass

thank you for the reply. Deep down I know what I’m feeling isn’t right, I am awaiting an appointment for therapy due to my anxiety. But it’s hard to climb out of this hole I have fell into I feel like I’m getting deeper...

im having twinges and random aches such as gas and no appetite and my head goes to “thats A symptom of ovarian cancer” it must have spread, because Iv left it too long. Then il get a twinge in my leg or side and think “oh there’s another symptom” then I start panicking and my chest feels tight and I think “ok so it’s in my lung” typing this out I sound like a lunatic. I can’t explain any logic in it and nobody understands what I’m trying to say. I don’t even understand it. I even googled if I could pay for a full body scan to check my whole body for any masses or anything. It’s completely taking over my life. My fears are just too overwhelming and I’m so scared I won’t get to live the life I want to a ripe old age and I don’t know how to handle it :( 

im sorry for the rambling you must think I’m mad x

bhi Rawdoodles, I second what Lass told you about staying away from google unless you want to scare the pants off yourself. You are right to be concerned and have done absolutely the right thing in seeing a gynaecologist and asking for a scan. She has had a good look at you and is unconcerned enough not to see you as an urgent case for tests. She has also found the reason for your bleeding. So I would take that. The scan will be a precaution but should put your mind at rest. Once the worry gets its hooks into you its hard not to cayastrophise. We have all been there and done that. But it sounds as though you are driving yourself mad for nothing xxxc

Hi rawdoodles,

Sorry you have found yourself here, it seems people arrive here always at a time of worry. 

I'm no expert in these conditions,  but i can say i know how you feel and it horrible to feel so worried.  A few things i can say from persobla experience, which may reassure you. 

Having gas after having a polyp removed is completely normal, esecially if it was done via hysteroscopy.. as they pump you with gas to enable them to look at your womb. The gas then travels through your fallopian tubes and all around your body, for me i had tummy ache and gas for a good week after my polyp removal which was unlike anything I've ever had before.

The other thing i can say, is that when the lining of my womb was looked at, there was no point that any gynae said it looked normal! So for them to say that to you is very postive !!

Good look with the transvaginal scan, i find these to be the least unpleasant of all the gynae appointments.. as they are a bit more dignified in a darkened room and within a few days you should have the results. 

Good luck, and try not to worry as worry alone can make you ill and lose your appetite. Let us know how you get on!!

Ive not posted for a while as i hust wanted to forget about things until the hysterectomy. I was tild this would happen in June and after much messing around by the hospital they gave me a date in August!!!!!!!!Despite them telling me it was important i had it as soon as possible. Lots of worry and stress followed and my GP referred me to a different hospital to a leading specialist for a second opinion.

So, 9 months after this started i am still going through treatment for my hyperplasia with atypia.  I was scheduled to have a hysterectomy two weeks ago, however after seeking the second opinion I am now being treated by mirena coil by a brilliant specialist. The hosiptal i had been attending, was awful, no follow ups from them, letters to me or my doctor, impossible to contact anyone and very little care.

Anyway, im back to see my specialist tomorrow, as i had an MRI and retesting of my previous biopsy samples. If the results are okay i will continue on with the Mirena coil and see if that works as i want to try and conceive. The new specialist quickly referred me to a fertility specialist who said embryo freezing was possible due to decent egg production ( the only part of my body that seems to be working) i would be a good candidate.

However, everything hinges on the MRI and biopsy results tomorrow and whether the hyperplasia with atypia has devloped into cancer (if i understand correctly) ! I have a tendency to think negatively, as so far in this process, every set of results has always been the worst case scenario. However, i am at least prepared for it and feel ok, nervous but i have complete faith in the new specialist and that in itself is reassuring. I feel they will do whats best medically and i don't feel the need to second guess what she says, like i did at the last hospital. 

Its strange to think tomorrow could be polar opposites in terms of good or bad news.  Either I'm good to go, and can start the process of freezing eggs or I've got worsening hyperplasia/cancer and need a hysterectomy and follow up treatment. It feels like I'm a human pendulum,  but i just have to go with it.

Hope all of you ladies are well, as i said earlier I've really tried to busy my mind with other things over the past few months and coming on here just felt too difficult. Whereas now i feel stronger again and despite the potential for devestating news tomorrow, i feel more able to deal with it.

xxxx