Consultant won’t give me a hysterectomy

[PookieDo]

Sounds dramatic as I was so prepared to be put on the list today, but she won’t touch my womb, despite it being a ridiculous tilted mangled shape after ablation, and 3 new fibroids growing intramuscular that are on average 7cm large.

I had ablation 1 year ago for uterine fibroids. I am now having some kind of bleed-and-sudden-release situation where the blood all pools in my tilted womb then expells itself at unexpected intervals

She found I have high levels of prolactin and LH in my bloods.

I have to see an endocrinologist, which I am on the waiting list for.

She isn’t going to commit to anything but was quite firm that she thinks that this is my pituritary gland or PCOS.

I have no new ovarian cysts and they have follicles in them and I am not peri menopausal either. The waiting list for endocrine is ‘unspecified but long’

In the meantime all I can do is take tranexamic acid, stay near a toilet, wear black and invest in more tena

I am so fed up

That sounds really shit

Why won't she offer you a hysterectomy? Does she think the fibroids are going to disappear if they can sort out your pituitary gland / PCOS??

How old are you, if it's not a rude question? And do you have children? I wonder if there's a policy not to do a hysterectomy in, say under-40s or something unless it's the only option ...

Yep she said I was too young too actually!

She said something along the lines of
These fibroids aren’t easy to get out, before we start fiddling with your muscles and poking around you need a brain MRI.

I already was feeling worried about the endocrinologist but she seems to be pretty sure there is something wrong with my pituitary gland, which I can’t even see anyone about for god knows how long.

I am trying not to google anything about tumours

I am 39 but sterilised

Can you ask fIt a second opinion? Go for a private consultation?

I think if I need to see anyone quickly it is an endocrinologist not another gynae. I get what she is saying because it might not solve why I have this problem and I am glad she is helping me get to the bottom of what is going on. I have so many symptoms of PCOS but no diagnosis but it could be all along I have a problem with my pituitary gland.

I can’t afford to go private at all

You can have a single private consultation and then revert to the NHS for treatment.

I need an MRI of my brain now because I have already had the blood tests. I could ask my GP to repeat the bloods but if they just say the same thing I still need an MRI. MRI is crazy expensive

Can a pituitary gland problem cause a tilted womb though? No. Sounds like the NHS have messed it up with the ablation ... can you see the consultant again, or ask for a second opinion, and take someone with you to advocate for you?

It sounds awful, I'm so sorry

Private mri is 500.00. I paid this about a year ago to have brain mri scan. It is a lot of money but if you have it and are desperate then might be worth considering.

I was bought back from my holiday early as a pelvic scan revealed a dangerous thickening of the lining of my womb. The Gynaecologist was dismissive, almost like I was wasting his time. I had terrible adhesions after a c-section and was in constant pain for well over a decade. I'd had several laparoscopic operations to remove them, but they grow back.

I kept going back to my GP, who referred me to another consultant who was brilliant. We explored other avenues- prostap injections, mirina coil. He ended up giving me a hysterectomy - when he went in, it was a right mess in there.

My point is, don't give up, you need help, ask your gp for a second opinion. My hysterectomy hasn't solved my problem, but it has significantly helped.

Now I’ve slept on it it was dismissive. She basically did tell me it could be worse - My periods could be longer and heavier, It’s not really that bad. The fibroids probably aren’t causing too many major problems and my main problem is my pituitary. I’m too young to have major surgery.

I’m too young to live like this. I worked from home on Wednesday to stay near a toilet because I felt uncomfortable using the work ones as they don’t flush properly and there is so much blood. Also even just sitting on the office chairs makes me anxious. I bled all over my bed last night

No discussion how I am in the same situation I was a year ago after surgery (I did bring this up) and how there isn’t even any medication for me either

I can’t take the pill as migraine with aura and I have lost 2 mirena (expelled) due to the fibroids causing huge blood loss. She didn’t even mention prostap.

This is not the same consultant who did the ablation
He warned me he wasn’t sure he got all the tissue and sure enough 4 weeks after the ablation my periods were back to heavy. I then had a mirena put back in and over the course of 18 months 3 new fibroids have grown. She thinks my pituitary gland is causing them to grow. But yes the shape of womb is the fault of the ablation but usually this doesn’t matter as you don’t bleed anymore so it doesn’t affect you

IMO you need to see a better gynae, not an endocrinologist. This is a hormone issue and there are many good gynaes who could help you. (I see one of the best in the UK/ world expert for my care - privately- and I know he could help you.)

Is there any way you can afford £250 for a single appt to get advice, privately?

You need to see another gynae for another opinion.

I'd go back to the gp and say you want a referral to another gynae.

I had terrible bleeding issues for years, nothing worked, I had a fibroid removed and still suffered so I asked for a referral. I was offered an ablation or hysterectomy. I took the offer of a hyst and they discovered I had loads of adhesions (surgery took over 5 hours) I was older than you, but you know your body and I'm sure the nice guidelines say that if a woman requests a hysterectomy it should be considered. It is major surgery though, so as long as you are aware and positive its what you want, then I'd persists with asking for one.

This was NHS at a private hospital
So I would be seeing her or a colleague and the last one was from the same place!

Even the sonographer last week said my womb was a bit of a mess and she thought they would take it out