multiple submucosal fibroids grateful for any advice

[che1182]

Hi All,
I'm new, also not a massive fan of forums, trolls etc etc so this is a big thing for me! But I'm desperate.
After two years of being ignored by my GP and fed various oral contraceptive pills for painful and extremely heavy periods I was finally referred to gynae after changing GP and discovering I was anaemic. To cut a long story short they have found loads of endo (which has been diathermied away) and at least 6 sub mucosal fibroids. My consultant with 25 years experience says he has never seen anything like it. They are now trying to refer me to an infertility specialist but in true NHS style they are refusing to see me so everything is a bit of a battle at the mo. I am due to see the gyn again next week to discuss my options.
Basically my gyn says that if he removes the fibroids I will be left with no womb lining therefore will have difficulty conceiving - hence the need for referral to specialist.
We were not even trying to conceive although it was in the pipeline for the next couple years. Now life is totally upside down. I am so stressed I cannot work, sleep, and I just don't know what to do anymore.
When I search online for submucosal fibroids I tend to find people have one or two but not multiple like me. Is there ANYONE in the same boat (or has been and has a lovely success story?) I feel so alone.

Can't offer advice as I know nothing about this but hope someone comes along soon with advice! I can't imagine how you feel not knowing what's going on/going to happen sending hugs

Thanks
Yeah it turns you in to someone completely different - I've gone from a confident successful woman who loves a laugh in to a stressed crazy lady who can't get through a day without crying. I'm a mess

Oh dear that does not sound good flower, it's uncertain times for you and I'm sure given time you will start to be confident and the tears/madness will stop/slow when you've been given some direction... right now it seems like you've been abandoned with little info by the nhs...in my experience shouting ad stomping and taking no for an answer from your specialists will be beneficial...keep demanding to be seen!!! Hope someone sees this that has experience!

che this will be a long post, so settle in! Fibroids don't seem to get posted about much on MN but Fertility Friends has a mahoosive section of support threads just for broids. You will get bags of help there from lovely people who have as many, if not more of them than you!

Firstly I send you a big hug. You have found out something rubbish and ahead of the time you were thinking about ttc. I can imagine what a headfuck that has been so go easy on yourself.

In December 2011 I had a large fibroid discovered during a laparoscopy. I'd been ttc for a year with no luck. I'm afraid I don't have a success story for you as I'm still bloody trying (though they abound online and on here from time to time) but bear with me. Anyway, it was the size of a large satsuma and I saw photographs of it that were pretty gross. I also had feelings of pressure and pain (and actually thought I'd got cancer). To edit out a very long story I went for a myomectomy to remove the offending lump. Bugger me when they opened me up the bastard had gone! So I now wear a c section scar for no good reason. Answers for this odd turn of events were either that a large fluid filled cyst had ruptured during an internal exam I had a few weeks before the op OR (and I like this answer less) the bulge on the photo was a tool used during the lap that momentarily distorted my uterus

None of the above is very helpful to you but gives background as to why I know A LOT about fibroids as I read all of google in the five months between the lap and myo. So here is some advice.

1. get in fertility friends.
2. Get a private consultation. I'm no nhs basher, they've saved my life, twice. But with my gynae/fertility needs they have been rather dismal. I know mine is an exceptional case and that they are over stretched and so on. But the time that this has taken out of my fertile dwindling years (I'm now 36 went for first consult at 34) doesn't bear thinking of. I resisted a private apt for AGES. I will never know why. I finally went for one recently. It cost me £175 for 45 minutes. It is the best money I've ever spent. I found out more about my situation than I have in two years on the nhs. I felt listened to and not rushed. There is no obligation to do anything other than that. If you can find a fibroid expert then go to them. I know this can seem like a lot of money but it will be worth it.
3. you don't yet know if you are unable to conceive! There are many many women who only find out about their whopper broids during their pregnancy scans. Advice on conceiving with the fibroids is important but my cons had a woman who carried to term with multiple large fibroids. The womb is an incredible thing. In my reading, age seems to trump many other ttc challenges. You don't say how old you are but if trying was a few years down the line I bet you have a lot of time on your side and youthful eggs.
4. google can be shockingly scary. Try to limit looking to set times of the week/day etc.

I hope this is of some help and that the balance is ok and not preachy. I just know that I was aghast at finding out I had a lump I didn't know about or understand. If I can be of any help at all just shout. My own GP thought I was in medicine as I know such a lot about them

Above all, you are not alone. Broids are common. I think the reason people don't talk about them on here much is that they usually don't cause people grief. Good luck.

Hi Rabbit,

I just suddenly thought I'd check on here (haven't been on for a week) and low and behold there is your post! You will be pleased to know the reason I haven't been on here is that in the meantime I found fertility friends - and that is where I've been (I have an identical post on the uterine issues section!)

I have my gyn appointment on thursday so hopefully will start getting some answers then. I have found (through fertility friends) a fibroid specialist at St Georges (tooting) who I'm hoping I can be referred to on the NHS (if not I'll see him privately) so I'll be demanding that on thursday. Yes the NHS has been a nightmare for me so far, and the worst thing is - I work for them :-/

Age wise I'm 31 - so maybe not as youthful as you thought. Hence I'm eager to get going with all of this..........

Yeah I'm aware broids are common, however not my situation with the type of broids and the amount (of that type) If I get told one more time that I'm an 'unusual case' I may combust (which might sort the broids out!!!) This is the issue - because I'm such an 'unusual case' noone knows what the fuck to do.

Anyway thanks so much for your reply and I hope to catch up via FF. Hope you start getting some answers and some movement soon too.

Love Chell xxx

Che I'm glad you found the ff uterine place, I found it incredibly supportive. And a specialist is a good plan. I found the dead ends, wild goose chases and general inertia of my nhs treatment suffocatingly frustrating. I too had 5 months of well, we've never known anything quite like this before and head scratching and it was so isolating and overwhelming. My broid was impossible to locate on scans (which should hand set alarm bells ringing) and I searched and searched for a story like mine but couldn't find one. There is a lady on ff who had LOADS of broids removed. I think she had zoladex to shrink them beforehand? Has anyone said what would happen if you were to become pregnant?

No that's one of my questions for Thursday, but reading other ladies experiences it either doesn't happen or they miscarry - so I dunno.

Yeah my gyn said I'd need zolodex (he originally thought he'd do the surgery himself) can't say I like the sound of that and all of its side effects!

My friend had something similar to yours, a solid mass appeared on her ovary during an ultrasound. Cue few weeks of shitting herself she had something nasty and when she had her MRI it was gone! Bizarre. Wish all mine would fuck off!!!!

So what's going on with you then? Are you having ivf? I've looked in to all that too just thinking ahead and it's a total headfuck! I haven't the first clue about it all. I don't know where abouts you are but I've had a friend have it at Oxford clinic (or something like that) and it was first time both times this clinic is supposed to be amazing.

Anyway can't wait till tomorrow it's like waiting for Christmas!

Love chell xxx