What are my options?

[PookieDo]

Firstly I’ve been discharged from my gynae so will need a new referral

I am 39 and white British but dark haired

I have excessive body hair and am 3 stone overweight. Acne on face and back got so bad I have had roaccutane x 2. I now have extensive melasma pigmentation all over my face. I’ve had 2 androgen tests which appeared ‘within normal limits’

2 vaginal births last one 15 years ago no issues with pregnancy or birth

My breasts have turned quite hard an fibrous in the last year I’ve had scans on them and this was the diagnosis as they are so painful I can no longer wear any normal (or nice) bras

I have such heavy and prolonged periods i am anaemic all the time

I grew 4 very large womb fibroids 2 years ago and had them removed and endometrial ablation with sterilisation. During this he found a large cyst on my ovary and removed that too. Didn’t show on a scan prior and 4 weeks after the ablation I had a normal heavy period which continued for 14 days. Consultant said oh dear it doesn’t always work

I can’t take the pill (contraindicated) and my first mirena fell out with heavy bleeding

I am 14 months down the line from ablation and 6 months with the second IUD and my periods are still 14 days long. Today I am on day 12 and I have awful cramps, huge clots and a lot of blood

I don’t even know what to say to the GP as I’ve been so many times and keep saying I am too young for a hysterectomy, it’s not PCOS etc. I am really miserable

Anyone give any advice? What options do I have?

Update from the loo... IUD has fallen out!

I don't have any advice but wanted to offer my sympathy. That must be awful bleeding so heavy for so long.

Thanks
I think now IUD no 2 has self expelled they might have to help me!
That was a bit scary. I posted as I felt really horrible today, lots pains and flooding having to rush to loo, was sitting on loo loads of blood coming out and I felt down and coil strings was hanging out. I pulled it slowly and a huge clot came out too. Left IUD in the toilet (it looked in tact). Last time this happened I got sent to A&E they didn’t do anything anyway!
Feel like total crap now and v tired

The false menopause (prostap, zolodex etc) via Gynie Consultant, or Depot injections (probably more frequent than 12 weekly though in my experience) via your GP.

I hope you get some relief soon. Maybe also look at diet options: even looking in to the endo diet might help as it can help estrogen problems x

I have never heard of a false menopause! What are the pros of this vs partial hysterectomy?

Chemical menopause is temporary and is an injection (usually slow release, every 3 months). You can’t have it forever really (can negatively impact bone density etc) and you may need hrt, but it just makes your body think it’s had a full hysterectomy and calms your hormones down. I had it for endo but it positively impacted my overall health and PCOS symptoms.

I have been referred back I have to wait 4 weeks

Blood stopped gushing came to a full stop for about 16 hours. Then returned with clots and gushing
Where is this blood coming from? I don’t understand how there is so much. 14 days of a period, I reckon there was about 500ml yesterday in one go when IUD fell out now still more?!! HOW AND WHERE

GP said something about womb lining removal - the level up from ablation apparently that might be next

I’ve heard of that: Can’t think of the name. But I would probably discuss with a consultant about having something hormonal in conjunction to try and help prevent it happening and improve everything.

definitely!
Today still gushing and clots it’s really getting me down now
It’s called a myomectomy
But I don’t know if I have more fibroids
I think uterine artery embolisation sounds more like something i would want

You poor thing! I completely understand. Are they able to give you norethisterone for a 10 day emergency course? That's what I'm on now and after flooding a wrecking two pairs of trousers in two hours on Saturday night to actually being san pro free today. Even if it's a stop gap at least it's a break? Might be worth asking about?

I don’t think that will help as something else is bleeding.
Still lots and fresh red I also have low pain on the left side
I don’t know what to do except wait till I see a gynae
This is how much bleeding I’ve had in 4 months

Apparently I ovulate tomorrow

Totally feel your pain- today is the first time in nearly a month that I'm only spotting rather than bleeding. Might be worth asking about though if the pill is contraindicated they might not give it. Although the norethisterone is contraindicated with the pill I'm on and they still gave it to me as an emergency measure to stop the flow and give my body a break. I'm not suggesting it would sort things but it might buy you a few days of 'normal'.
I really hope that they can sort this for you. It's so miserable and limits what you can do, where you can go and how you feel all the time. Total sympathy here for you.

Thanks. I did try it once before it didn’t help much as the bleeding was already going and also it completely messes your cycle making my periods even more unpredictable!
I am not allowed the pill due to migraine as increased stroke risk

I’ve had one more big flood incident today
I feel like I have been run over but a bus. I’m trying to work but it’s not going well

I think you need to get back to the gp and explain again just how much this is effecting your day to day life as it's so so miserable. Maybe they can speed up a referral?

I don’t know if they can it was choose and book, I have the log in and there is nothing sooner. It’s not on 2 week wait pathway so probably unlikely

Day 16. Bleeding is now related to how much I move around. So do nothing for hours, no flooding tiny trickle. Go for a walk - dislodges clots. That is fairly normal for a period sometimes but not so much for me I am a constant trickler usually so don’t know if there is something blocking my cervix? Im becoming paranoid and exhausted