Fibroids Heavy, long periods - anemia iron infusions....

[YogiandBoo]

I have been to my Dr abotu 3 or 4 times now as for FOUR BL**DY years have had extremely heavy periods, clots, severe pain that I want to stab myself to make it stop. Dr useless. Did own research and knew I had fibroids. Eventually got MRI and have adenomyosis, which is exactly like fibroids.

I have had ZERO life for 4 years. Can't work as unreliable as hell and pain etc unable to work 1 week of every month which itself is random timing. Not claiming any benefits, and now skint.

Dr is just like 'well lets get you on some iron. I tell her I have been on iron for 2 years and no better. She does NOTHING! Lets do some blood tests, get the results, lets do some more blood test in a few months.... AAARGH! I feel like someone is standing on my chest, I get palpitations, can't breath very well, and have zero energy. I want an iron infustion, she says later down the line maybe!

1. Would you claim/can I claim incapacity benefit?
2. Anyone had an iron infusion/woudl you demand one?

Thanks.
2.

I'd demand a referral to a gynecologist, there's things that can be done to help. An iron infusion will only be a tempory partial fix

I also had fibroids and heavy periods and had several iron infusions. Seems you can take those little iron pills for years and they won't make a dent in your anemia, but infusions really help. In the end I had a hysterectomy (kept ovaries and cervix).

My sister had a csection to remove some rather large fibroids (nothing else, she is young)

I had a myomectompy to get rid of my multiple fibroids. I had to fight for it, my god, the relief after was incredible. We (me and DH) could have a life again. I would definitely recommend it

I agree with PP, the iron infusion will help you temporarily but you need proper investigation & treatment. I had horrendous bleeding- an ultrasound confirmed fibroids & I had a hysteroscopy & biopsy to rule our anything more sinister.
The treatment offered depends on things like your age & whether you want children in the future. I have had a mirena coil and that seems to be working OK for me.
Ask for a referral to see a gynaecologist consultant.

I have the same problem and the drs never give a answers what might be causing all my problems. Then I went to a gynaecologist. Even he didn't know why I had such heavy periods that lasted 6 months. Its awful when your not getting answers. Keep going back to the doctor's until you get sorted.

I flagged up on the doctor's screen cause I was there 3 times a week. Its absolutely unbelievable that doctor's can leave women to suffer in this way.

Luckily mine are ok at minute but I would hate to ever be the way I was. it ruined 2 years of my life

And still I have no answers from doctor's

Having a hysterectomy in September for endometriosis, fibroids and suspected adenomyosis. Periods have been horrendous for a decade. Stomach in bits from pain and having to take iron due to anaemia. You need a proper investigation and referral. Hope it gets you some answers.

Referral to gynae.
I have adenomyosis. Diagnosed back in December when I went a&e bleeding heavily and in pain.
Treatment varies and includes having the coil fitted. I declined this.

Since then several more admissions for blood transfusions, iron infusions and pain management. Iron infusions for me raise my levels a bit, takes about a week to kick in and during that time no iron tablets. Although can no longer have them as I've had reactions.

If you're changing your pad every hour, get to a&e.
My last admission included back pain, I was in a bad way which had them removing clots.

I'm having a full hysterectomy in a few weeks. In the meantime to reduce stays I'm given a monthly hormone injection, daily hormones and tranexamic acid, plus controlled pain relief.

Also, have a chlamydia test. During one of the stays, someone had it with endo and once treated the pain and bleed improved.

Thanks ladies! You are all amazing. I can't believe what we go through and the outside world has no idea. Makes me a little bit more compassionate towards people. I will go back and make demands! It was just driving me crazy that I am saying 'the pain every month is 9.9 out of 10 - 10 being I kill myself', and she just looks at me blank faced and suggests another blood test.

Anyway, I have appreciated your input.

Thanks.

It's awful. I eventually had a hysterectomy and now so happy. But the decade I
between I had tranexamic acid and mefenamic acid for the pain and reduces heaviness of flow. Then later a mirena coil to reduce bleeding or even stop periods altogether. But flooding cramping etc and low iron levels over the long term are unacceptable and if your gp won't act see someone else.

Id ask for a gynae referral.
I too had heavy heavy periods. Fibroids.
Had embolisation , blocks the bloods vessells to the fibroids, done by radiologist under local anaesthetic, which involved an overnight stay but cured the bleeding almost at once.

No idea if this will be of any interest but when I suffered with extremely heavy periods and anaemia I went onto the mini pill which stopped my periods completely (which solved most of the problem in itself). I don’t know if that might be an option... obviously it doesn’t solve the cause as such.

I had a hysterectomy for fibroids. Obviously a major decision not to be made lightly, but I've never regretted agreeing to it.

First of all, you need a different GP. Can you change surgeries?

You also need a referral to a sympathetic gynae consultant.

I had a similar problem to yours (large fibroids, heavy periods) for years and I just assumed that's what I had to put up with. Wrong! My excellent GP referred me to a consultant (without being asked, I went in for something else) and I had an operation a few years ago. I can't remember the name of it but it involved cutting out the fibroids, blocking their blood supply so they couldn't grow back and inserting a Mirena coil, again to stop them growing back. It has been brilliant and has changed my life. No periods at all now and no pain.

I feel your pain OP and suffered in the same way for many years

One day a friend told me that she had been in the same position and had tired the progesterone only pill, non stop, and voila no more periods

I asked my GP for the progesterone only pill, he said it was worth a try and it worked perfectly for me. I was left wondering why nobody had advised me about it years before

It does not work for everyone, but worth a try surely?

Also, if you are struggling to get a timely referral you can just turn up at your local NHS genito-urinary medicine (GUM) clinic and they are usually great at seeing you quickly (same day but you may have to wait for a while on the day), running a range of tests to check that you don't have an infection or other issues, and then make a speedy referral to the appropriate consultant.

Good luck