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I have something wrong with my ovaries and now my nipples produced milk - AFTER a hysterectomy!!??

(61 Posts)
PurpleLostPrincess Fri 03-Dec-10 01:31:48

I had a hysterectomy just over a year ago, they left my ovaries in as they appeared to be healthy and I'm 33 so the consultant didn't want to take them unnecessarily. I got the occasional 'twinge' in my right ovary from time to time over the year; and just assumed it was that I was ovulating, got the usual pmt symptoms without the period of course.

Anyway, this twinge turned into pain on Tuesday and gradually got worse through Wednesday to the point were DH and DS wanted to call 999. I rang the out of hours doctor and went up to their clinic where they ruled out appendicitis but moved me into A&E who took my blood and gave me painkillers. They tried oramorph first, then IV paracetamol, none of which worked, finally the IV morphene gave me some much needed relief! They came to the conclusion it must be something to do with my ovary. They offered for me to stay overnight but I just wanted to go home rather than stay in a hospital bed which could be needed more by others. I have a scan tomorrow morning to see what it could be - options are: twisted ovary, a cist, or endometriosis (histology showed up that I had it before the hysterectomy and apparently it can reoccur after). We got in at 4am - driving home through a blizzard wasn't fun!

I'm at home and taking oramorph to ease the pain and take the edge off it. Wanted to post here earlier but was in too much pain to type or figure out what to say!

So, was getting ready for a shower earlier when I noticed that the pores around my nipples were a bit strange - looked a bit like a small spot, so I started squeezing gently and what looked like milk came out of my nipple shockbiscuit. I couldn't believe it!!!

Has anybody had this post-hysterectomy before? Does it confirm that there's something not right with my ovaries, being as they produce my hormones etc? Totally blown away by all this and exhausted from it all too - any experiences of anything similar would be most welcome, just so I don't feel like such a freak sad. Also concerned they may have to take the ovary away which would mean more time in hospital, as well as potential menopause which I thought I had avoided!

TIA

AttilaTheMeerkat Fri 03-Dec-10 07:33:33

Hi Purple

Oh you have been through the mill haven't you to date.

Why was a hyst recommended to you initially?.

You should have been moved also to a gynae ward that night rather than remaining in A & E. I have the greatest of respect for A & E and they treated the symptoms but gynae problems are really not their speciality, presumably they knew about your hyst op.
I can understand why you wanted to go home but for any other woman who has such problems I would urge them to remain in hospital overnight.

Endo can certainly recur post hyst; if endo is the root cause of the ovarian pain you may need yet more surgery.

The milk can be caused by excess prolactin; this can be treated with tablets.

You certainly need to see the cons gynae who did your op initially asap.

PurpleLostPrincess Fri 03-Dec-10 09:03:13

Thanks Attila, I still wonder if I should have stayed in overnight but it would have been purely for painkillers which I could take at home. Saying that, I probably would have had the scan by now! DH has been looking after me really well...

Anyway, hyst was done because I had CIN level 3 cells about 12 years ago, and they came back again. In those 12 years, I've had 2 m/c's at 10 weeks, then I had DD2 and had a very difficult pregnancy. When she was born, she had lots of problems bless her (not that it's relevant really!). I had already practically begged the gp for a sterilisation because my periods were absolutely hurrendous - every 2 or 3 weeks with lots of clots, sometimes spotting inbetween, then a bit of spotting after sex on a few occasions. I was also flooding and wasn't coping very well. So, when I went for treatment I asked about my options for a hyst and the consultant pretty much said I had a good case and agreed to do it. After my biopsy results came in, he said he wanted it to be done sooner rather than later because of the recurring level 3 cells and my history.

The hyst itself was an experience to say the least - I was taken back down to theatre 12 hours later as they had nicked an artery and I had been bleeding internally, the pain was unbelievable!!! So, they cleared me out and fixed me but going in twice extended my recovery somewhat...

Sorry, I've really rambled there! Just wanted to give you the full picture lol!

I'm off to get ready for this scan but will pop back later on. I'm supposed to be getting my hair done but not sure if I'll be up to it!?!

AttilaTheMeerkat Fri 03-Dec-10 10:10:30

Hi Purple,

Am glad to read that your DH has been taking good care of you.

Good luck with the scan, I hope you get some firm answers as to what has caused your pain.

PurpleLostPrincess Fri 03-Dec-10 13:24:02

Hi and thanks again Attilla. I'm at the hosp now, not a fan of txt speak on mn but my fone is a nitemare!!!! They found a mass, abt 4x5cms that doesn't look like a typical cyst, so having a laparoscomy on emergency today, yikes! Waiting 2 b admitted now. Have to do a list of bits 4 Dh to send in. It's times like this i wish he cld drive ggrrr! My Mum is with me, i actually asked if it cld b a tumour and she said that based on my history its unlikely. I'm knocked for six, will try and report back later!!

AuntBessieIsComingForXmas Fri 03-Dec-10 15:48:06

Thinking of you smile

Thingumy Fri 03-Dec-10 16:21:19

thinking of you Purple,hope your surgery goes smoothly

<also has had a hysterectomy and in her 30's>

Doyouthinktheysaurus Fri 03-Dec-10 16:25:08

Thinking of you, hope everything is ok. What a nightmare for you<<hugs>>

<From another post-hysterectomy 30 somethingsmile>

PurpleLostPrincess Sat 04-Dec-10 11:35:12

Thank u all, seems there are a few of us then!!
Little update that has thrown me a bit: basically they are delaying as they would rather go in by incision rather than keyhole now. They are taking more blood as not taken any since a&e, they want to check my tumour markers and also ovarian cancer markers!!!!! Having a ct scan and internal scan too. At least they are being thorough but those words have freaked me out to say the least. My consultant is back in on monday so it has been suggested he will put me on his elective list for tuesday. They are also concerned it has to be done by a senior as there is likely to be scarring tissue from the hysterectomy. So much to take in!!!!

Doyouthinktheysaurus Sat 04-Dec-10 12:04:25

Oh, you are really going through it aren't yousad Are you at home or are you stuck in hospital?

Like you say, as scary as it is, at least they are covering all bases and doing all they can. The waiting and wondering is the worst, I know, all sorts of things go through your head.

I had my hysterectomy for cervical cancer and had about 10 days between diagnosis and the MRI scan which confirmed it hadn't spread. It's the not knowing which is the hardest, once you know exactly what's going on somehow it's easier to face.

It looks like they are moving quickly with you and although you will feel in shock for the time being, getting the op done is the best thing.

Look after yourself and take it easy. If you want to talk or rant post on here or feel free to PM me.

I'll keep everything crossed for you x

PurpleLostPrincess Sun 05-Dec-10 11:48:52

Thanks, yes the not knowing is almost unbearable - I'm walking around with this thing inside me that we don't know what it is!

I was in hospital but they've let me come home for 24 hours on day release, so not been discharged properly and I have to be back by 8am tomorrow morning. It's so lovely to be home and I can sort out what to pack properly too, phew!

Thank you so much for the support - I've been totally overwhelmed in rl too, the texts have really kept me going, although it's hard work keeping everybody up to date! I've had to be careful what I tell DD1 (12) as I don't want her to worry, but DS (16) is aware of what is happening. DD2 (3) has a bit of a cough and has been missing me so I'm getting lots of huggles with her today!

So, tomorrow is the day of CT scan, internal scan, blood results and seeing my consultant, the one who did the hysterectomy... Will pop back on here from time to time!

BTW, I honestly thought the hospital would have a wifi thing so I could get on the laptop but they don't, and the dongle thing I have didn't have a strong enough connection to get on the internet sad. So glad I can get on with my mobile, even if it does take ages!

PurpleLostPrincess Sun 05-Dec-10 12:11:18

Ooooh, I meant to ask - if they do remove my right ovary, does that mean I will go into menopause with just the one left? They haven't said if that will happen but I'm just wondering...

KerryMumblesFaints Sun 05-Dec-10 12:20:43

i am in a cold sweat reading this thread. i am very sorry for what you're going through but the period symptoms are very similar to what i've been going through the last 2 months. was into gynae who did a close look at cervix with some sort of scope, smear fine.

i'm 48 so may be normal hormonal changes.

scheduled for a hysteroscopy (?) on the 4th, Jan. she asked me if I wanted it before or after xmas and now I'm wondering if I should have it done before???

Doyouthinktheysaurus Sun 05-Dec-10 19:14:20

I hope everything goes ok tommorrow PurplelostPrincess.

Of course it's a very worrying time for you and your family.

At least tommorow you should have some more idea of what's going on and the timetable for your operation.

I'll be thinking of yousmile

PurpleLostPrincess Sun 05-Dec-10 21:21:58

OH SHIT!!!! I've just googled ovarian cancer and I've had the symptoms all year, all of them, SHIT SHIT SHIT SHIT SHIT!!!!!! I was diagnosed with IBS and have had varying bowels, I was diagnosed with an overactive bladder because I'm constantly 'going', the list goes on... SHIT FUCK SHIT!!!!!!

This is more serious than I realised before, don't know what to do!!!!! DD1 (12) asked me if I'm going to be OK and of course I reassured her that everything will be fine. Whereas DS (16) knows about the tests etc. DH is in a world of his own but is doing his best to look after me and DD2 who is only 3 and has a terrible cough. He found out on Wednesday that his mum has less than a year to live so he's understandably rather shaken...

Sorry, just needed to vent - I had avoided googling for so long, I was just curious, wish I hadn't now <<kicking myself now>>>

VivaLeBeaver Sun 05-Dec-10 21:28:46

Princess - there are lots of things that cause these symptoms apart from cancer. I have all the symptoms that you have and it is niggling at the back of my mind.

I'm having a scan on Sat to see if its a fibroid, GP says it probably is. I know I have endometriosis as well.

I work with a load of gynacologists and tackled one of them who I really trust. He said he would eat his hat if I have cancer. I'm in my mid 30s and have had children. These 2 things lower my risk significantly.

A fibroid or endometriosis can cause you to wee mroe often. Bowel problems likely to be unrelated. Step away from google and try not to worry. Try and get some sleep and speak to the Drs tomorrow, they should eb able to reassure you.

Doyouthinktheysaurus Mon 06-Dec-10 08:05:05

Oh bless you, never, ever google!sad

Please remember that ovarian cancer is very rare, there are other things it is more likely to be.

Don't go assuming the worst, it really won't help you. Once you go back in and start to have the tests and things are moving forward you will hopefully feel a bit better, at least then something will be happening.

I'm sorry about your MIL, can't be easy on any of you at the moment. Just give your dc's lots of cuddles and lots of reassurance, that's what they need right now.

<hugs>

Thingumy Mon 06-Dec-10 09:37:09

Just want to add some more thoughts for you today,I have just read your update from last week.I hope things go as smoothly as they can today and that all will be well with you

Please keep us updated Purple,we are all thinking of you x

PurpleLostPrincess Mon 06-Dec-10 19:49:19

Thank you so much, mn is such a wonderful place!

I'm pleased to say I have GOOD NEWS!!!! Also, I'm home which is totally brilliant grin

The conclusion is that this thing inside me is a Hemorrhagic cyst and the pain was caused by my ovary bleeding into it while ovulating. It's NOT cancerous which is extremely fantastic!!! My consultant said that rather than operate, and provided I can cope with the pain, he would like to scan me in 6 weeks time. In the meantime, I suggested I keep a 'pain diary' as I feel like I have a ticking bomb inside me, but at least now I know what it is now!

I got back in this morning thinking I would be having a CT scan and an internal scan but was told to get ready for an MRI scan - that was quite possibly the strangest experience of my life and I came out in quite a bit of pain - 40 minutes of keeping still in a bit tube while in pain was quite something, but I got through it! They couldn't see my left ovary again when doing the internal scan but apparently it showed up on the MRI and is fine.

So, if the pain gets worse I have to go through my GP and get back onto the gynae ward. If it happens again or the pain doesn't decrease, they may still have to remove it surgically, but hopefully it will go away of its own accord.

I can't tell you how relieved I am, in fact the whole family is elated, especially DH of course! The support I have received is simply amazing and this whole experience has opened my eyes. I've battled with depression the past couple of years now and was having another low phase, but this has made me re-evaluate things to say the least!

I'm exhausted now but have had strict instructions to put my feet up for the evening, so I'd best do as I'm told. Thank you each and every one of you for your thoughts and I hope things go well for each of you who are facing similar issues.

PLP xx

PurpleLostPrincess Mon 06-Dec-10 19:52:45

After all of that, I forgot to ask him about my nipples still producing milk, d'oh! Perhaps I'll mention it to the GP when I see him...

KerryMumblesFaints Mon 06-Dec-10 20:43:17

i am so pleased for you!

hope i get some good news as well

PurpleLostPrincess Mon 06-Dec-10 20:55:09

Thanks KerryMumbles, hope all goes well on 4th Jan, do let us know? smile

Doyouthinktheysaurus Tue 07-Dec-10 02:12:31

Oh, I am so pleased for you PurpleLostPrincess, what an enormous relief for you and your familysmile

Fingers crossed that everything goes ok and the pain doesn't get worse.

Relax and look after yourself. You have been through a bit of an emotional rollercoaster and it can take it's toll.

Doyouthinktheysaurus Tue 07-Dec-10 02:14:07

Oops, its not it's....I thinkblush

Thingumy Tue 07-Dec-10 10:16:21

am really pleased things didn't turn out as serious as they could of,You must be so relieved!

Make sure you do put your feet up and rest smile

Do ask your gp about having a blood test to check your hormone levels,your breast issues maybe linked in with that.Even though we've kept our ovaries,they can stop working way before menopausal age-I have a blood test every year to just keep a eye on things (due one now actually).

Anyway,I hope the pain subsides and I'm so pleased with your outcome!

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