Heavy periods, fibroids and a polyp!

[rosesinmygarden]

I've been suffering with very long heavy periods for a couple of months. A blood test revealed I'm badly anaemic and a scan revealed 2 fibroids and a polyp.

I'm now on iron tablets and tranexamic acid for the anaemia and bleeding. My GP has referred me to the gynaecologist but I've been told it may be a long wait due to COVID despite the fact they like to remove polyps and send them for testing due to the small risk of them not being benign.

Should I be concerned about a long wait? We could possibly afford private if necessary. I've not seen the gp in person, just a few rushed phone calls so I don't really feel it's all been explained to me.

Wondering if anyone else has any experience with this?

I don't want to get you down but I had a large fibroid develop approximately 7 years ago ( was discovered in hospital after I had to be admitted because I lost so much blood) & after being discharged with tranexmic acid & the pill that was about the extent of the support I got from the nhs. My gp said waiting lists were too long to refer me & recommended I went private. I basically spend years drugging myself on tranexmic & norethisterone to stop the bleeding. I couldn't find a private doc willing to operate in my region as some were scared about the consequences on my fertility. When I did, I couldn't afford it 🤷‍♀️ eventually I gave up & had it removed where I was working abroad on my health insurance & they could do it keyhole which was way better recovery wise. And had no problems since.
If I were you, I would not give up until you get referred on nhs.
Read around treatment options widely - there's embolisation that is an option for some fibroids. And laser as well.
Really push for some sort of treatment.
If the bleeding is really non stop bad, ask gp for norethisterone to give you a break from the tranexamic acid. It does make you put on weight but I found it really controlled the bleeding.
I was really young & not pushy enough when this happened me. I hadn't had kids & they used this as an excuse to leave me in a terrible state (my haemoglobin was 5 sometimes 😖 never mind the fact it would have impossible to conceive with the fibroid having taken over my whole womb) so please push & push for what you need!
If you are far from menopause & the bleeding is uncontrollable, make damn sure they help you!!
I felt so let down as a woman by the whole system & the years of it dragging out when the solution was so quick in the end!
Good luck! Fibroids are a curse but you CAN get through this!

Thanks @allhappeningatonce it's actually the polyp I'm more immediately concerned about to be honest for the possible cancer risk.

I'm 41 and my mum had gone through the menopause by 46 so there's a chance I may too which I suppose would solve the period problem!

My main concern is the safety issue if being made to wait to get the polyp removed.

I've now had two polyps removed (one was congenital and a further one was also found years later). These were pedunculated polyps which are basically bell shaped polyps that hang into the uterus. In my case these caused problems with bleeding and they also release hormones; more often than not they are benign.

Hi rosesinmygarden

I have same issues as you, though my long periods, lasting in excess of 30 days bleeding, were infrequent with months on nothing in between, so I wasn't anaemic. My GP referred me on the 2 week cancer pathway, although apparently I didn't meet the strict criteria. I'm early 50s. I had a scan that showed fibroids and polyps and a hysteroscopy that confirmed this and took a biopsy. I'm now waiting for results and due to have polyps removed shortly.

My local hospital waiting list seems OK. I realise I was on the urgent list but I've been seen really quickly. I think, given I didn't meet the normal criteria, I may have been bumped back onto the normal waiting list but they had capacity in the clinic so I was seen quickly. You could ring the hospital and ask for gynae outpatients to find out how long the waiting list is. That may reassure you about how long you may have to wait.

Good luck.

I have a history of polyps. As I understand it they are almost always benign and nothing to worry about. Wretched things do keep reappearing though.

Have you considered/been offered a Mirena coil to help with the heavy periods? It worked wonders for mine, stopped them completely in fact.

Thanks ladies, I've got a number to phone if I've not heard about an appointment by 7th September so will ask about waiting lists etc then. The more I read, the more I think this is likely to be irritating but not necessarily dangerous. I'll push to get it sorted though but I'm panicking less now.

The gp has suggested Lorena which I think is a possibility once I've seen the gynae about the polyps. For now I'm on tranexamic acid and iron tablets so will keep taking them as they seem to be helping.

Mirena! Not Lorena!

Well, I've just woken to the hospital who say that I won't be seen until new year at the earliest as they are very behind on appointments.
So now I'm terrified that my polyp might happen to fall into the small percentage of cancerous ones and by new year could be far worse.
Am I over reacting?

I had a polyp revealed in an ultrascan five weeks ago. That was done privately. Only tomorrow will I have a FaceTime appointment with a gynaecologist. No hysteroscopy or polypectomy yet, even though I’m going privately. And am post-menopause, albeit on HRT.

Things aren’t back to normal.

I know things aren't normal. But that doesn't necessarily make it safe to wait. That's my possible concern. We could just about afford private but it's whether it's really necessary.

The point of my post was that going private doesn’t seem to have speeded things up.

Ah I see, yes sorry I've just noticed your scan was private too. Wow, you'd have thought private might be quicker!

Is your polyp causing similar issues to mine? I'd be interested to know what your gynaecologist suggests as next steps if you have time and don't mind sharing? I feel very in the dark and need to stop googling!

I've just had my online consultatation and will be booked in for hysteroscopy and D&C under GA. I hoped I'd be able to talk my way out of it :)) He said it was unlikely at my age, 56, the polyp would be anything more sinister than a polyp but the tissue would be examined.

My polyp seemed to respond to the oestrogen by making me have periods again, something I don't want at my stage and shouldn't be having as I'm on continuous HRT (no bleeds). I also have more fluid in my pouch of Douglas (!) than I should, according to the ultrasound scans I had five weeks ago.

I had a very close friend die of a rare cervical cancer that she thought was just perimenopause. Nothing at all like my uterine polyp but I'm haunted by the fact that if she'd been taken more seriously earlier on, instead of being told it was just her stage of life, something going on with her digestion, or 'anxiety' and if she'd been seen by a good gynaecologist before the tumour spread, they might have been able to save her life. I'm generally an 'ignore it and it'll go away and don't fret' type but I am trying to be sensible. I'm lucky that I can just about afford the private fees if I economise elsewhere. IF there's another lockdown we won't be going out much anyway.

If you want to know the name of the consultant I'm seeing privately, PM me. He's in the West MIds, so we will have a very, very early start, but he is lovely.

Thanks @Abraid2. We are in the SE and I've done a bit of research. Private would cost in the region of £3k apparently.

I'm having a blood test next Monday and will hopefully get a phone appointment with the GP to discuss (I'm scarily anaemic) so I'm going to ask her straight what the risk is and how to go private if necessary. My worry is that while we could afford the £3k, we couldn't afford a lot more than that.

What happens if, god forbid, they remove the polyp and it tests for cancer? Will the nhs then kick in again? Or would I be expected to pay?

It seems very unlikely this would be the case but you’d almost certainly be referred to the NHS.

Thanks for your replies, I do hope you appointment goes ok.

Thank you!

I can’t comment on the polyp but I can share my fibroid experience. I had a really big fibroid that was diagnosed when they discovered anaemia while doing bloods for something else. I ended up having a hysterectomy as I was mid-40s and had completed my family. Best thing ever, what a transformation! Just be aware that this is one of the options that might be open to you and have a think about how you feel about it.

In between diagnosis and surgery I tried tranexamic acid but it didn’t make much difference to the bleeding. My iron was easier to fix and I feel much better within weeks.

Thanks @Ohdeariedear
The tranexamic acid is helping on curtailing the bleeding. Still in a lot of pain though. I'd definitely consider a hysterectomy if possible. I don't want more children and figure I'm heading towards menopause anyway. I'd love to be free of periods.

Well, I am booked in to see the private consultant next week.

I had the second blood test which revealed my iron levels are back to normal so at least I can stop taking that! When I spoke to the GP and told her what the hospital had said, she says that she thinks I may wait a year or more to see the consultant as it is a 'routine issue that most women learn to live with' and that because of the low % chance of it being cancerous they wouldn't see me as a priority. She admitted that if it was cancerous, waiting this long would likely make my prognosis worse. I was speechless to be honest that she was so devoid of empathy.

Do other women really 'learn to live' with losing up to 2 litres of blood in a single period and being so anaemic that they can't get out of bed? Really? Why is that okay?

So, she begrudgingly agreed to print out my blood tests, scan report and a copy of her original referral for me to give to a private consultant. I went to collect them this morning and the referral letter is not factually correct.

Spoke to the private consultant's secretary today who was absolutely lovely (I know, I know, I'm paying!) and I get to see him in person next week. She's going to forward the reports and letter to him so he's read them before the appointment.

I feel relieved that I am at least going to get to speak to someone who knows about these things, rather than just being sent home to be in pain and bleed and worry.