Hysterectomy.

[Beanfield]

Hurrah and Hallelujah. My uterus has been given an eviction notice!

30 years of being a complete bitch. Let me down twice (miscarriage and ectopic). Did what it should do twice (2 grown up DDs). Never officially diagnosed with anything but suggestions have been PCOS and endometriosis. 30 solid years of hideous periods. 30 years of being fobbed off by assorted GPs who told me it was normal to faint, vomit, incapacitate and take over my life for one out of every three or four weeks.
It’s got to the point where my cycles are just 18-20 days long, I bleed huge amounts for 5 days (emptying cup every 2 hours), overflowing, clots. Light bleeding on and off for a further 4 days. Bleeding on and off randomly mid-cycle. Puking and dizzy. Period diarrhoea, excruciating, labour style pain. Another 3 days of pain while i ovulate plus bleeding then too.
Tried everything. Mirena - I bled for 8 months then it fell out. Painfully. Pill - unhinged. Drugs - I’m allergic to the good ones and the others don’t work so well. Herbs, flowers, tea, homeopathy, diet - all bollox.

Finally saw a Dr who actually listened and agreed to whip the bugger out. Not sure how yet as apparently it's ‘bulky’ (like the rest of me) so need a scan to see how big it is. Also waiting on smear results and endometrial biopsy (which hurt like a bastard and is still hurting 4 days later).

Hi again screamingvalenta,
Your reply was helpful, thx
I’m seeing my consultant this Friday,
So after that I should have a clearer knowledge of what my issues actually are & how they deem to tackle them. If I have Endo,Adenomyosis & prolapse (which they suspect) should I seek an Endo specialist or stick with a general Gynaecologist?

I had a vaginal hysterectomy 5 weeks ago, due to a 3cm fibroid which caused massive blood loss on an irregular but all too frequent basis. I was in hospital for 2nts, on painkillers for only 2 days after coming home, driving after 10 days and back to work in 2weeks. I do have the luxury of working from home, but the point is that I felt well enough to even contemplate it. Its been amazing for me. Good luck with your surgery 💐

@Whirlygigwendy

Good to hear you have a consultant's appointment on Friday.

Regarding endo specialists, I think it depends on how your consultant proposes to tackle your conditions. If they're hoping to get rid of the endo and avoid a hysterectomy, the 'gold standard' for treatment is a referral to a specialist BSGE Endometriosis Centre, and that's what I would be pushing for in that scenario.

If the adenomyosis means a hysterectomy is your only option, you will probably need to stay with a general gynae consultant; and whatever happens I would imagine you would need a gynae surgeon to address your prolapse (if you have one) and it needs surgical intervention.

Has your consultant said whether, in the event of hysterectomy, they would want to remove your ovaries? This is something to discuss, as removal of your ovaries will cause immediate menopause, loss of oestrogen etc.; but you might find (as I did) that your ovaries have been damaged by the endo and need to come out.

Before your appointment I would recommend making a list of questions to go through; and make notes when you are in there as there'll probably be a lot to take in.

LittleBittyKitty that’s fab. I’m having a wibble and really needed to read that this morning.

Hi Whirlygigwendy

My burning pain is pretty localised, well, it’s the entire uterine area. It literally feels like there is a large, burning ball in there that is really heavy. Several times a day it also feels like I am being stabbed in the area with a hot knife. It sometimes takes my breath away.

I have quite bad lumbar pain too and sex and even orgasm are painful. I sometimes bleed afterwards.

I have pain in my legs and knees and am permanently knackered and breathless. I ran home from the bus stop the other night (total wuss in the dark!) and I couldn’t even run 1/4 mile. 2 years ago I could run 5 miles without even breaking a sweat.

The period pain is the worst although the awol Mirena does help with that. It feels like the whole world is being pulled out of my backside and it’s agony.

Yes, it makes a huge difference being listened to! I can’t wait to get this whole thing started.

Beanfield you will feel so much better afterwards, I’m sure.

Looks like the Consultant may finally say "yes" to a hysterectomy after my last scan. Yay!!

Mind you, it's my doctor that's giving me nightmares about the surgery - I am overweight (currently trying to remedy this) but she says she's very concerned that it will be a very hard operation for me. She was telling me I have to get mobile immediately after the op, I have to be hydrated - if I wasn't drinking, have to be on a drip, have to have enough pain relief, needed to open bowels asap, had to watch out for thrombosis/DVT!

She's Polish and gets very excited about things - in fact she said she wished she could be in hospital with me to make sure I was OK! It's nice she is so passionate about good care and I am sure it all comes from the right place, but it does worry me a little.

Good news Jappy.
I’m trying to lose a bit/some/as much as poss but its slow and hard going cos i am a pig.

Advice please. 4 days ago I had operation to fix bladder repair and vaginal hysterectomy. Dr said op was very challenging as my womb was so big and bulky and they struggled with it. He said they have sent it off for investigation. What does that mean? Also had drain as list blood. Home after 2 days with iron tablets and antibiotics as have bladder infection. My whole area from below boobs to vaginal just feels so bloated but I'm having lots of poos as taking medicine to help. I feel so pathetic being so tired and not being able to do much

Sorry to hear you are having a bad time, Jen. I can't answer all your questions, but it's standard procedure to send the removed womb to pathology after the operation. It doesn't mean there is particular reason to suspect anything sinister. You should get a report after analysis. Mine confirmed adenomyosis and fibroids.

It is normal to feel absolutely exhausted after your operation. It will take time to get your strength back. Let your body go at its own pace and rest as much as you need to.

Thank you. Just not used to feeling like this and feeling sorry for myself

Jen poor you. Heal well and in the meantime, take it easy.

Wallow Jen. Lie around and indulge. It’s your body telling you to stop and do nothing

Eviction day confirmed. Hurrah! But also and eeeeek!

Best eviction wishes to you!

Yay great news! Do you have long to wait?

4 weeks.
I cannot bloody wait but its also a bit eeeek. I have been de-cluttering. Always a sure sign i’m Stressed. So yes, its a v good thing but i’m A bit scared about pain, recovery, hormones, inactivity, dying etc.

Beanfield me too! Exactly. I'll let you know how I get on as I'm going in a week ahead of you.

Are you having the bikini line version? I am, with all the bits except ovaries being taken out.

Not sure as they won’t know until they get in there. Hopefully laparoscopy and sucking it out vaginally but it might be too big.
Good luck. I’ll be needing strong words and top tips.

It's pretty glamorous whichever, isn't it? 

Oh it’s great.

I also have the double sided blessing of working with my docs. I like and trust them and they know me. But knowing they are going to be delving around in my guts and i’ll not be wearing any pants is a bit disconcerting.

I have just got my hysteroscopy date through, 22nd Jan. he is going to try and fit another Mirena on the day but honestly, I’m not sure I want one.

It controls the flooding and the pain to a degree but it also makes me fat and miserable. It might not be possible anyway, I will see on the day I guess.

Suppose it’s just a wait and see thing Megan?

I have yet another period. I’m now bleeding for 7 days, not for 3 and then back into the next one.

It really is taking the piss.

Megan that happened to me- in the event they couldn't fit the Mirena as there were too many big fibroids and the ablation failed as well for the same reason, so next step was hysterectomy.

Beanfield my operation date had to be changed to 15 January so you're ahead of me now. Good luck and heal fast.

Ah Fanny that’s a bit shit. I so hope i dont get postponed.

The bastard uterus just gets worse and worse. It’s pouring out and the clots!!!!! It’s like having a pineapple stuck up there and then suddenly it floods out. It really feckin hurts and the amount coming out is just ridiculous.

Beanfield poor you. I hope it has started to let up now. Not long to go - this is probably your last ever bastard period!

I'm feeling ok about the postponement of my op because this is a very bad time of year for me to be away from work and I was a bit anxious about leaving the last three weeks of term to my team to manage with the big rush of UCAS applications etc. It also means I don't have to be in pain over Christmas holidays.