Consultant error plus covid means I'm at risk of endemetrial cancer.

[Teddansononmyown]

I've had 20 + years of gynae issues linked to endometriosis and cysts. I've had 6 laperoscopies amd been on every hormone you can imagine in that time.
Two and a half years ago I got really sick. I puffed up and looked full term pregnant. It was a really scary time of blood tests, scans and I ended up going private as the waiting times were just too long to contents, especially given the bloating, exhaustion and back pain.
We never really got to the bottom of it and I was passed from gastroenterology back to gynae. The working theory was a gluten intolerance mixed with travelling scar tissue over stomach and bows but, given the number of previous surgeries, it was felt managing by diet (going completely gluten, wheat and dairy free) coupled with HRT would solve the issue in the short term and give some relief. We could then regroup and figure out whether further operations were needed.
Then covid hit.
My gynae consultant prescribed Estradot 50 to be changed 2 x per week. It was only to be for three months but it stretched to almost a year when my gp called me in a panic and told me that I needed to take progesterone 12 nights a month too.
I did this and , while things got to the point I could function, I wasn't great.
My consultant then retired and I wasn't given a new one.
Things have got progressively worse in the last 6 months. Extreme pelvic pressure where it feels like things are going g to fall out, a constant need to pee, extreme lower abdomen pain , leakage, extreme lower back pain, odd smelling discharge.
I finally got back on the list for a new consultant and had a video conference in February this year. She was shocked at the treatment schedule and booked me in for an internal scan. This isn't until December. We'll discuss treatment options then but its looking like a hysterectomy (I'm mid 30s)
I stopped the patches and progesterone in September because my mood swings, skin and weight gain/bloating are out of control. Ik militant with my food but any time I eat -even clean foods- I expand. I thought it was time to give my body a break but have gone back after 5 weeks as I am so sore and uncomfortable.
I'm now so panicked about the damage that has been done when on the year of eostrogen. My symptoms align massive with something sinister and I getting worse by the day. The only positive is the fact I'm not losing weight but everything else is deeply concerning.
I have 8 weeks to go to the scan. I don't know what to do.
Sorry for venting. I just feel really let down and so worried that this mistake may lead to something really bad.

I am shocked you can't have a scan for almost 2 months.
Is this NHS?
Have you had any unusual bleeding before you started on the progesterone?
Your dr ought to refer you under the 2-week urgent rule.

The stats show that for women using estrogen-only for a year ( who have a womb), 20% will have a thickened lining and a very small percentage of those will have what's called 'atypical' changes (possibly cancerous.)

Have you ever been referred to a dietician? It sounds as if you could have IBS and maybe the FODMAP diet would help.

I don't know where you live or what your finances are like, but in London you could access a scan almost the next day for around £200. If that's an option I can suggest places.

Sorry- you had a consultation in February with your new consultant and she's not got you a scan date till almost a year later- December? That's ridiculous.

I am in a group for endo in another country and uti type symptoms (pressure, leaking, persistent urge to pass urine and back pain etc) seem to be 'normal' symptoms of endo for some people.

However do push to be seen quickly. Ask about the 2 week thing mentioned above to your gynae. Are you on sufficient pain relief to help in the mean time?

Blimey, I didnt mean to suggest it is normal and you should put up with it - sorry having a flare up myself so not making much sense! I mentioned that from the point of view that do try not to worry too much about other more sinister conditions just yet

When all the bloating started I was tested and came back as positive for ceoliac disease. I follow a strict FODMAP diet, alongside no wheat, gluten or dairy. If I relax this at all,I feel terrible. I haven't changed anything other than stopping the oestrogen/progesterone mix in September, but have since gone back on it because I'm so uncomfortable.
I haven't seen the consultant since February. When she referred me for a scan, she did say there would be a delay due to Covid. It seems 10 month is the standard wait as, at the time, it wasn't deemed urgent.
When I spoke to the GP they said they couldn't move the scan forward and just gave me endless medication. It's really not helping.
I'm so tired of feeling rubbish.

Ah, so you are on the Fodmap anyway and it helps a bit?

Sorry for what might seem like a simple question, but why are you on HRT at 35? Are you having a premature menopause or have you had surgery on your ovaries that means you are now post menopause through surgery? (no hormones.)

I'm confused because for many women, HRT isn't recommended with endo if there is still some left.

It may also be that the type of hrt you are on simply isn't suiting you.
Can you not get another appt with the gynae? Have you approached your GP to ask if they can hurry things along?

The consultant prior to this one put me on the hrt to try and reduce symptoms of endo, or at least get to the bottom of whether the root of the issue were dietary or gynae. I think the theory was that if I did FODMAP for 3 months, then hrt for 3 months, we could see which had the biggest effect.
However, we never got that far as it seems like there is no single reason why I'm so bloated and sore all the time.
If covid hadn't hit, I would have gone back to consultant who would have made a decision regarding treatment plan, which would have likely been a further op or other hormones. But then covid came, he retired and I was sort of forgotten about. I assumed all was OK and, as I was feeling OK, just continued on. It was only when the gp called in panic that I realised that the treatment plan shouldn't have happened.
I currently look 7 months pregnant and none of my trousers will do up..Guess just have to ride it out.

@Teddansononmyown

When all the bloating started I was tested and came back as positive for ceoliac disease. I follow a strict FODMAP diet, alongside no wheat, gluten or dairy. If I relax this at all,I feel terrible. I haven't changed anything other than stopping the oestrogen/progesterone mix in September, but have since gone back on it because I'm so uncomfortable. I haven't seen the consultant since February. When she referred me for a scan, she did say there would be a delay due to Covid. It seems 10 month is the standard wait as, at the time, it wasn't deemed urgent. When I spoke to the GP they said they couldn't move the scan forward and just gave me endless medication. It's really not helping. I'm so tired of feeling rubbish.

I work within the NHS and see many patients being referred for scans. What they have told you is utter nonsense. Nearly a years wait for a scan is ridiculous. The max our patients have to wait is maybe a month. A colleague needed a scan and was called 4 days later to book it for the week later and that was non urgent. Please call the hospital department make sure have even received the referral, tell them how long you have been waiting and if they can fit you in if there is any cancellations.

@Teddansononmyown I agree with the PP.

You need to get an appt now with your GP and start all over again.
Any woman with bloating and the symptoms you have, needs an urgent scan under the 2-week rule.

Forget the useless consultants you have seen already.

Go back to your GP and they can refer you for a scan. You need to be more forceful with them.

Please call your radiology department/consultants secretary. A scan should be no longer than a 6 week wait. You need to make sure the request has been done and then push for it.

I work within the NHS and am aware of the stains at the present moment but you can’t wait that longer for a scan, doesn’t make sense!

I'm going to call the GP today to see about getting urgent scan. I'm now so big I can't really move.
I have the scan appointment for December and call for cancellations every week. It's not getting me anywhere.
Thanks for the push , folks. I keep thinking it'll get better but it just doesn't.