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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Hospital results wait time Drs not communicating .....

7 replies

Waitwaitwait · 12/04/2021 23:06

I probably abu, however I'm worrying like hell. I'm waiting for results for MRI and Biopsy. Up until this point things were moving quite fast but now time is standing still.

Back story, i have suffered painful heavy periods since my teens. (mid 30s now) I've had ovarian cysts 3 times luckily treated medically in the past. Around this time last year my periods went hay wire. Excessive heavy bleeding, bleeding for 2 weeks at a time, constant period pain for 8 weeks, spotting, missing periods etc etc, i put it down to lockdown stress. Then they settled down around december but a familiar pain and lump returned, i spoke to gp and said it felt like when I'd had a cyst. He made me go to the surgery that night, he examined me and agreed he could feel 'something'. Sent me for urgent bloods and ultra sound. Bloods came back normal. Just before i Had ultra sound mid jan my stomach swelled so i looked pregnant. At the scan i was told i had 6 fibroids of different varieties and sizes the biggest being 10x10x8 cm, and polyp.
Spoke to gp the following week, he said he had refered me to a consultant-end of conversation.
Had telephone apt. Mid feb. The conversation started
"hi wait, you have been refered to us because you have fibroids and polyp, what treatment do you want ?" I requested a hysterectomy (from what i had read on google it seemed. Like the best option) he agreed with me, we spoke about family history etc and he said he was referring me for urgent mri and hysteroscopy inc biopsy of the polyp. And we would speak again after.
Had MRI the following week, and the hysteroscopy the week after begining of march. At the hysteroscopy she couldnt find the polyp but told me my womb was filled with lining, there was a lot of ummming. She took biopsy of the lining and discussed posible treatment inc the coil to reduce symptoms (i declined as i dont do well on hormonal therepy) she said she would highly recommend a hysterectomy in my circumstances, but my consultant would be in touch to discuss this further.

That's the last i have heard! I am goingnout of my mind! And my symptoms are getting worse, i look and feel 4 months pregnant, i need to pee all the time, its painful to open my bowels, i feel fatigued and nauseous and aswell and the constant month long period type pain returning i keep getting random stabbing pains like contractions and hot flushes. I called the consultants secretary 3 weeks ago and was told my results were back but they needes to go before the panel, which would be the end if that week. I have heard nothing since. I have left 2 more messages since (one being today) but nothing.

I understand that covid has made waiting lists quadruple and there are people in a worse situation than myself but aibu to think that a call or a letter is too much to ask for?

OP posts:
Nsky · 12/04/2021 23:10

Ask again, demand help

mrsjoyfulprizeforraffiawork · 12/04/2021 23:15

Med sec here (though no longer in nhs now). As someone who has been through similar as a patient, I would now try contacting consultant's sec again and ask if the MDU (which I think is the panel you mention) did take place as planned and if your case was discussed and, if so, then ask if consultant can tell you asap what the decision was. If you can't get answers to these questions, contact PALS department at the hospital and get them to find out how you can get the info as they have a lot of clout in this sort of situation.

Sidge · 12/04/2021 23:17

So you had a hysteroscopy 5 weeks ago, and they’re applying for exceptional funding for a hysterectomy by the sounds of it (which is standard).

I imagine you’ll hear within the next month and have a date for surgery towards the end of the year if your experience is anything like mine, and that was without a pandemic.

YANBU to expect to hear back from gynae soon, but I think you need to modify your expectations regarding time frames sadly. I do sympathise, the effect on daily life is significant.

mrsjoyfulprizeforraffiawork · 12/04/2021 23:30

Aargh! MDT not MDU
(I assume that next step of surgery has to be discussed between the multidisciipinary specialists to see if they agree it is best course of action for you to undergo, based on those results they will all look at in the meeting. This is normal practice these days. I had something they couldn't fathom the nature of so they discussed my case in 2 or 3 of these MDTs before they decided on surgery having asked for more scans, tests etc to help them decide).

Waitwaitwait · 12/04/2021 23:34

Thank you so much. I know I'll have a wait on my hands re the hysterectomy, that i can live with. Its just the information I'm being impatient with, the biopsy was ordered due to family history, the polyp (where ever it has vanished to) was unlikely to be cancerous, however the excessive lining and some other symptoms are risk factors. I have not been worried at all throughtout this strangely but The longer the wait goes on, it is now playing on my mind to the point I'm struggling to sleep. (for context, ive lost 3 family members to cancer, 2 of them gyne related) Since my initial GP apt. There has been very little conversation. The consultant didn't even explain what treatments were available, the conversation started exactly how i described above. I only knew what treatments were available due to google. I'm taking pain killers daily, which i hate but its the only way i can function.

I left a msg for the consultant again today, (answering service) if i haven't heard anything by weds I'll try again.

OP posts:
Waitwaitwait · 12/04/2021 23:37

I should also add that during the hysteroscopy they said the location on the largest is causuing my cevrix and uterus to tilt.

OP posts:
omgwhy · 12/04/2021 23:51

This sounds so stressful, I have endometriosis and live with daily cramps, stabbing pains, bladder issues. It's utterly debilitating, the waiting times for surgery for Endo are now approx 18-24 months in daily pain.

I hope you get got your answered sooner, but maybe if it's even a consideration can you go privately? I had to last year they do payment plans and it's not as expensive as you may think.

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