Print

Please login or register.
1 Hour 1 Day 1 Week 1 Month Forever
Login with username, password and session length

[Violetta808]

Hi PearlJ. You do sound much like me - it was almost four years since my last natural period (so no history of PMB when not taking HRT which is a good sign). And we know that oestrogen feeds fibroids, and that they are incredibly common, so perhaps they’ve woken up in your case too (not so much a monster as pesky little gremlins).

I still don’t know what I’m going to do next but I feel a lot calmer now I know everything is benign, and glad I had the investigations done, and also thankful that I’ve not had to wait too long from referral to results. I hope you get your answers quickly too.

[PearlJ]

I still don’t know what I’m going to do next but I feel a lot calmer now I know everything is benign, and glad I had the investigations done, and also thankful that I’ve not had to wait too long from referral to results. I hope you get your answers quickly too.

I’m sure all will be fine but it’s a good job I’m not a panicky person as I just looked at the NHS app to check my scan appointment and it seriously says “your GP has booked you into this service urgently as they suspect you may have cancer”.  If I hadn’t done my research, joined this group and generally suspected it’s HRT related I could be really worried by that! NOBODY mentioned cancer when booking this scan.

[Jules]

I still don’t know what I’m going to do next but I feel a lot calmer now I know everything is benign, and glad I had the investigations done, and also thankful that I’ve not had to wait too long from referral to results. I hope you get your answers quickly too.

I’m sure all will be fine but it’s a good job I’m not a panicky person as I just looked at the NHS app to check my scan appointment and it seriously says “your GP has booked you into this service urgently as they suspect you may have cancer”.  If I hadn’t done my research, joined this group and generally suspected it’s HRT related I could be really worried by that! NOBODY mentioned cancer when booking this scan.

All urgent referrals say that because there has to be certain red flag symptoms for fast track. My mum had swelling in her neck and hers said the same. She didn't have cancer as it happens. As an example, my GP couldn't refer me for urgent endoscopy because I wasn't losing weight,  wasn't having difficulty swallowing and there was no bleeding. My US referral might say that, I'm not sure as it's been a 5 week wait. I know the 2 weeks wait has gone out the window in most areas.

[Violetta808]

Finally, I had my follow up gynae appointment, and to cut to the chase, I have been prescribed Tibolone…

Now the lengthy detail… I have been off HRT for nearly six weeks. I feel remarkably ok, apart from the return of the frequent headaches - they came back within 10 days and I get at least one a week. No fun. No return of VA but I am taking vagifem maintenance dose. And I still feel quite resilient, mentally, despite everything, though who knows how I will feel in another six weeks if I carry on ‘au naturel’.

Anyway I saw a completely new consultant who explained everything clearly and carefully without being patronising, and listened to me and answered my questions. It was a very different experience to the chaotic communication when I had the hysteroscopy (though the actual care around the procedure was exemplary).

First of all the very thick endometrium they found on the ultrasound in fact turned out to be a messy sandwich of endometrium and fibroid. My endometrium was actually very thin. But they did find the three fibroids which are poking into the uterine cavity and they would have caused problems with a Mirena, which is why they didn’t fit one.

The original consultant suggested a hysterectomy! New consultant agreed with me that it was a very drastic solution and definitely didn’t recommend it! He says it’s totally possible to remove the fibroids but it’s another invasive procedure and healing time might take a while, so his first approach is to try and find a way for me to go back on HRT first and then review.

The problem is I bleed on conventional HRT, hence his suggestion of Tibolone.

I’d only heard of it because I’ve been browsing this site, and realise it’s a little unusual (and honestly I just want to be normal when it comes to all this!)

The prescription won’t come until next week. I’m a bit nervous to try it and would prefer to be on a bio identical transdermal, but will give it a go.

Anyone else on it for similar reasons?

[shrosphirelass]

Great that you got someone who was sensitive and responsive to what you said. GReat that it doesn't look like there's anything really worrying, must be a relief. Do they have a long term plan for the fibroids? I don't know anything about Tibolone but it must be worth a try. I know what an impact constant bleeding has and hopefully it will help. Good luck

[Violetta808]

Hi

Hi Shrosphirelass (just noticed the spelling - is that on purpose??) thanks for replying.

I was beginning to wonder I was imagining it all so it was a huge relief to have a thoughtful consultant who made sense of everything.

I’m wondering if I should start another thread about Tibolone. There are plenty on the site but all quite old.

The fibroids…they cause absolutely no symptoms when I am not taking HRT, and the consultant says the fewer invasive procedures the better, which totally makes sense. So the plan is first to see if there is an HRT regime that doesn’t make them bleed, but then maybe have them removed (and have a Mirena fitted) if that doesn’t work.

How are you getting on? Is your Mirena settling down more? I hope so. Everyone says they can take quite a while to get used to.

[shrosphirelass]

No it was a typo! Good idea to do a new thread. Hopefully there will be some to share experiences. Refreshing to hear that not all doctors want to do procedures as a first response.

I'm still struggling a bit, not sure if its the mirena or the removal of the fibroid that are causing the discomfort. Have a really bad stitch type pain low down today. Sadly the bleeding continues, which I knew would probably be the case for a while. I'm still quite anxious that somethings not quite right but its 2 weeks today and if there had been any real issues I guess i'd have got a lot worse.

[Violetta808]

I do a lot of proofreading 

Sorry to hear that you’re still getting cramps but good that the bleeding is settling. The area where they removed the fibroid takes a while to heal but it sounds like it’s all proceeding as normal. It’s understandable that you’re feeling anxious though, given all the stress you’ve had over the past few months. I do hope everything settles down soon though.