Talk to me about Fibroids?

(23 Posts)
BloodyHateBeingAWoman Thu 14-Nov-19 19:35:22

Ugh. Just to add to the "shitty period" theme, I think I may have fibroids. Totally self diagnosing of course. Can I have a moan?! And can anybody let me know their experience?

1) started periods age 12. Awful, heavy 3week long periods. Was put on the pill to sort it.

2) came off the pill early 20s (makes me a bit crazy). Periods returned and were, thankfully, regular. And extremely light. I mean panty liner light for one day. For 10years. Had cervical erosion treated too. Oh and a random heart shaped womb diagnosed but nobody thought much of it so not sure what that means.

3) Tried to have a family. 3 awful miscarriages later I didn't succeed (biologically). Had the tests and nothing came back with a reason why. Nobody interested in my extremely light periods so I guess it made no difference.

4) FFWD to now and 6months ago my periods suddenly changed. Awful, horrific cramps. I mean rolling round the bed horrific. Went to the pharmacy and tried feminax ultra (recommended by them). It helps for 30mins then floods back and NOTHING works. I end up sobbing for 3/4hours in agony. DH actually asked if I needed an ambulance once. I can't walk around because I feel like I will throw up. I have stabbing pains in my hips and down my thighs. My feet ache?! But the pain in my tummy is just horrific and never ending. My period has become much heavier. Not heavy (remember I'm used to panty liner heavy) normal bleeding now but it's heavier for me. Bloated stomach when I'm on.

Mum and grandmother had fibroids and mum had a hysterectomy. Could I have the same?

I'm going to see the doctor tomorrow. Will they want to do an examination? I'm now at the point where I'm having to take time off work!

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LizziesTwin Thu 14-Nov-19 19:38:16

Adenomyosis, endometriosis.

Write down exactly what happens & the timings & go to your doctor. Don’t minimise the pain, be honest. See if your GP practice has a doctor who specialises in gynaecology, I think most do. Don’t be shy, go for it cake

Elieza Thu 14-Nov-19 19:43:43

Mine sent me to a gyno and I got ultrasounds on my tummy and internally. She diagnosed fibroids. They can remove them with keyhole surgery but may need to do a full hysterectomy if I bleed too much so it needs consideration.

BloodyHateBeingAWoman Thu 14-Nov-19 20:10:28

I don't care about the hysterectomy, I adopted my daughter and have no need for the shit that calls itself a womb! I will def not play it down. I always have but after the agony I have endured this week(and feeling so fragile afterwards) I am ready to argue my cause!

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Elieza Thu 14-Nov-19 20:27:09

I can’t have a hysto as I live on my own and you really need a friend or partner as you can’t do anything after one! Hopefully you won’t have that issue. Have you tried the pill or coil or anything else for your periods? The uk is really backward about hormone imbalance. Which heavy periods can be. I got acupuncture for mine. Worked well but expensive. America is much more tuned in to hormone issues. You can send bloods off to the USA for analysis but the uk doctors won’t understand the results. Sigh.

BloodyHateBeingAWoman Thu 14-Nov-19 21:00:04

I was on the pill for years but honestly it made me go crazy. I tried about 5varieties and when I found one that didn't give me extreme mood swings, they then discontinued it! The idea of the coil makes me feel ill.

Yes I would say that considering we make up half the population, they don't seem to give much of a toss about women's health or research much of it.

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LizziesTwin Thu 14-Nov-19 21:08:47

I refused a Mirena on the basis it might make me murderous. I had an novasure ablation in June. Life changing. No periods!

BloodyHateBeingAWoman Fri 15-Nov-19 09:14:52

No periods sounds amazing!

I have an appointment today. Could only get one with the nurse practitioner. The receptionist asked what the issue was and my answer was "agonising periods" and she said "not a problem for the doctor then"! hmm I'm not sure what Nurse practitioners can do, I know they can prescribe but not sure if they can refer to hospital etc. The last one I saw was so unsympathetic. I'm not backing down when I get in there. I've had enough.

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Elieza Fri 15-Nov-19 21:30:55

Hope you got a referral to a gyno OP and that you get the treatment you need to be yourself again without the pain of horrific periods.

BloodyHateBeingAWoman Fri 15-Nov-19 22:15:14

Thank you, she was actually very good! She did an internal/swabs and blood test. She also referred for a scan and assured me it was not normal. I have some treatment for the pain while I wait. She asked a lot of questions and things it is actually endometriosis. She thinks it goes back years, to when I had multiple mc. She said it was quite possibly grumbling back then. I never found a cause for my miscarriages but always felt there was something seriously wrong. I knew it wasn't just bad luck.
I've been googling it and so many little symptoms are the same as mine. I get stabbing pains in my thighs, my hips hurt and weirdly my feet ache too, all signs of it?! Not to mention the pain when needing a number 2. I guess I just wait now!

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Elieza Fri 15-Nov-19 23:01:05

Sorry for your past losses OP. I hope that they will get to the bottom of all your problems with the scan etc and sort it. flowers

Nat6999 Sat 16-Nov-19 01:15:57

Eliaza look at a laparoscopic hysterectomy, I am a single parent & other than the night in the hospital managed really well on my own afterwards, just make sure that your freezer is full of batch cooked meals & if you have shopping delivered, it is put on work surfaces so you don't have to lift. I was driving again by 7 days after my op, never needed any pain relief when I got home & even managed to walk the 10 minutes to my local shops the day I came home. It is doable with planning, the most you would need is someone to push the vac round & maybe a couple of loads of washing

BloodyHateBeingAWoman Sat 16-Nov-19 08:34:52

I know hysterectomies can be an option for these things but I'm assuming they don't want to do them anymore? The nurse didn't even mention it, she mentioned more that I could use contraception to stop bleeding. Problem is, hormonal contraception makes me go batshit. Not joking either, I was a horrible person while on it and thus have been free of it for 10years. The idea of doing that for the rest of my life makes me wonder if I would rather just stick with the painkillers she prescribed? Or would the condition continue to get worse?

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Elieza Sat 16-Nov-19 08:49:43

Do you have the option to try acupuncture? The treatment I got changed my life.

It’s expensive but it works really well on my heavy periods. It did take multiple sessions though, one in the first day of my period and one in the day it should end. Really worked for me.

Up here in Scotland it’s £50 per session. Get someone who is a member of the professional body and ask them what their experience is if dealing with what your problems are. I’m lucky that an acupuncturist with a fertility background is near me. She’s the reason I haven’t had to get a hysterectomy yet. She can’t remove the fibroids but she sorted my periods which are a bit unpredictable due to my age and fibroids- sometimes flooring me, sometimes three days although mostly five and no pain now, which is as it should be at my age.

Way I see it I’d pay that much at the hairdresser and that’s just a superficial treatment to make me look better. The acupuncture is a medical thing. Though both make my mental health better! Granted I’ve had more than I’d go to the hairdresser in the same time span but I couldn’t keep being off work sick and now I don’t have to.

IScreamForIceCreams Sat 16-Nov-19 08:56:52

I have a "family" of fibroids ( and PCOS), inside and on outside of womb, used to have horrific period pains, going on the pill eased the pain, was lucky to have one successful pregnancy, but did have , amongst other things, accupuncture prior to conceiving. As i get older, periods get heavier and painful again. Right now, I'm on sofa waiting for painkiller to kick in. Bloody things. My sister had hers removed - only time will tell what to do with mine. So following with interest!

Costacoffeeplease Sat 16-Nov-19 09:29:34

I had a full abdominal hysterectomy due to fibroids. Best thing I’ve ever done!

BloodyHateBeingAWoman Sat 16-Nov-19 16:48:06

I hadn't thought about acupuncture...I doubt there are any specialists in my tiny town. The more I think about taking the pill again the more convinced I am I don't want to. I would be swapping a couple of days of severe pain for 2weeks of severe mood swings and breakdowns every month. Neither feel appealing.

I don't need my womb. We adopted in the end so I have come to terms with all of that.

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BloodyHateBeingAWoman Sat 16-Nov-19 16:48:41

Costa- how readily did they do that? Did you have to jump through a lot of hoops?

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Costacoffeeplease Sat 16-Nov-19 17:01:35

I’m not in the uk and went private. I had a ct scan on the Sunday and was operated on the Wednesday. The surgeon said it was vital I had the surgery and actually wanted me to stay in and have it done the next day but I wanted a couple of days to get organised at home

Howaboutthisone Wed 20-Nov-19 15:02:44

I have been suffering with crazy heavy bleeding for nearly a year now. I've had several threads on here about it. I had fibroids diagnosed via ultrasound. Through the NHS they have been very reluctant to go for hysterectomy before trying other things. So I was on medication (norethisterone) to stop the instant heavy bleeding while waiting for a outpatient Hysteroscopy to remove fibroids. On the day of the appointment, the surgeon decided to only do a biopsy instead of removal. So in September I had another referral for fibroid removal but this time with a GA hysteroscopy. So things have been pretty bloody awful with the bleeding-going through tenalady night pad things. They got so bad today that I've now somehow been moved to an urgent appointment and will be having the op tomorrow. I really hope this will resolve things. For me it's not the pain so much as the extreme bleeding.
I'll let you know how the op goes and if it works.
Hope you get this sorted op.

Howaboutthisone Wed 20-Nov-19 15:03:39

Forgot to say that my current heavy bleeding is despite the mirena coil that was fitted at the outpatient appointment.

Nat6999 Wed 20-Nov-19 16:53:01

You may have a fight to get a hysterectomy but it is worth it. They want you to have tried a mirena coil, I refused & lied that I was a practicing catholic, I also told them about my mental health problems, the fact I was a disabled single parent. My consultant had already told me that a mirena coil wasn't the best thing for me. I had to go to a stage 3 appeal & got my MP to support me, within 3 days of her getting involved, I had my funding. If a hysterectomy is what you want, do whatever you have to to get the funding, in reality is probably works out cheaper for the NHS than having repeated hysteroscopies, hormone treatments & consultant appointments.

BloodyHateBeingAWoman Wed 20-Nov-19 21:39:12

See my bleeding is fine. Normal flow. It's the agonising pain I can't cope with.

Can endometriosis be linked with hip joint pain? The last couple of years I get it quite badly. Haven't got round to getting it checked out. I'm only in my 30s. Also a crazy anxiety sufferer.

There is not a chance in hell anybody is fitting me with a coil. Not.a.chance. Thankfully I have a heart shaped womb so they may not want to anyway. No doctor is coming anywhere near me with that. I'd rather just take painkillers for the rest of my life.

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