Fibroids!

[BatonRouge]

I have had fibroids for many years - now aged 43. A scan two years ago showed the largest was 10cm. Consultant said either manage it with hormone contraceptive or either have a hysterectomy. I imagine the latter option is due to their location although at the time I didn’t really query it.

Although my periods have been on the heavier side I feel I have been managing them quite successfully with Ferrous Fumerate and Heam/Non Heam iron sources. This has been without the need to go on the progesterone only pill which was recommended by Drs.

All good so far apart from my last period which was off the scale - constant flooding/clots etc for 5 days. Rather panicked I called my GP who said this could be a one off ‘type’ period however I should take a blood test. My period has now stopped.

Turns out my Haemoglobin levels were seriously low 78 g/l which was taken last Friday. This is because of the excessive blood loss caused by the fibroids.

Suffice to say I feel like a ghost. I do loads of exercise - running at least 15miles per week and weights etc. Now I’m struggling to walk up the stairs without getting tired/tight legs and increased heart rate. All a consequence of anaemia.

My GP said she would call the haematology department at Kings College to see what they advise - not sure if I’d be a candidate for a blood transfusion here.

I have started taking the pill which I really hope will stop/reduce the blood flow next month and am seriously considering a hysterectomy.

Does anyone have any advice and been in a similar position? a) about increasing Hb levels because I am now anaemic - should I push for a transfusion? b) hysterectomy- I’m 43 and do not want any more children. Thanks for reading!

Hi, we're moving this thread to our Women's Health topic for the OP.

In July mine was 86g/l and my ferritin was 9 and I had an iron infusion. The year before mine was 68g/l and my ferritin was 3 and I had an iron infusion and a blood transfusion. Are your ferritin levels low?

If you have a blood transfusion you will feel better within a day or two , but, if your iron levels are very low and you continue to have heavy periods you will become anaemia again quite quickly.
An iron infusion won't work as instantly but should last longer. In our trust there are quite strict protocols for which is chosen and 'pushing ' wouldn't help. Some sort of solution has to be found . The least risky is hormonal treatment. If it doesn't work then surgery may become necessary.i'm assuming the fibroid is positioned such that a mirena isn't suitable. If it was possible to have one that would be the best choice although it doesn't always work.

I'm six months post hysterectomy and it's absolutely life changing (in a good way). Rough recovery but totally worth it.

If I were you I'd push for one. You'll probably be on a waiting list for a year anyway.

No advice on the iron levels I'm afraid but I had an ablation (where they remove the lining of your womb) and I haven't had a period since. It has been life changing & is another option if you don't feel that a hysterectomy is for you. Might be worth looking into.

I spent 2 years attempting to manage my fibroids in other ways - chemical menopause, ablation, mirena etc etc.
Exactly 3 weeks ago I had the whole fecking thing removed - tubes, uterus and ovaries. Already I feel much better than I had before. My life is no longer ruled by flooding, pads and pain. It's amazing.
I'm not underestimating the fact that it's major surgery, but for me - it's the best thing ever. I'm 44.

"Consultant said either manage it with hormone contraceptive or either have a hysterectomy."

May I ask why UFE is not an option? Is the fibroid too large or in the wrong place for it?
Mine is smaller than yours and I'm being pushed towards a hysterectomy that I don't want - I don't have low iron (yet).

Thanks all, really appreciate the advice and sharing of experiences. I am going to talk to my GP this week to discuss options about addressing the fibroids rather than masking the real issue. Thankfully I'm beginning to feel better which I hope is a sign that my red blood cell count is improving!

Are you in London, OP? If so, see if you can get a referral to UCLH. I had my fibroids treated by the team there - it was amazing. One of the surgeons in the team is considered one of the best in the world for fibroid removal and a leading researcher.

In any event, definitely get a second opinion from a totally different team than the one you are using if you can. It’s no small thing, having a hysterectomy.

@IdealisticCynic Thank you, I'm indeed in London, LB Lambeth. If the mini pill doesn't improve matters I'll certainly follow this up.

I would look into the possibility of myomectomy. My local NHS hospital would not consider myomectomy but the large London hospitals might.

I have post menopausal fibroids - the largest is around 9cm and degenerating. I have chosen to have my PM bleeding and thickened endometrium (simple hyperplasia without atypia) conservatively treated - initially by Mirena which self expelled a week or so after it was fitted, then with a year's low dose Provera (medroxyprogesterone tablets) which I am now able to come off as the lining has been thinned by the Provera. I would rather not have a hysterectomy and am not being pressured to have one by my NHS gynae.

Ultimately you will go on to have a hysterectomy but up to you if you want to continue in this way. A sub total via laparotomy is less invasive.

What type of hysterectomy is offered may depend on the size of the uterus. I was told that if I did want a hysterectomy it would need to be open surgery with most likely a vertical cut because my fibroid enlarged uterus measures the size of a 16 to 18 week pregnancy.