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Otherwise - endometrial hyperplasia

• Message 1. 

  Posted by Sunny Clouds (U7606212) on Tuesday, 31st March 2009

  Has anyone got this?
  
  I've been told that I've got it and that it can be a precursor to cancer, but the hospital has tried twice unsuccessfully to gain entry to my womb for a biopsy because I have adhesions.
  
  I have no idea what else they can do to get a biopsy short of cutting me open, and in that case, surely they might as well just take everything out to be on the safe side?
  
  Any experiences out there?

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• Message 2

  , in reply to message 1.

  Posted by amethy5t (U13830783) on Tuesday, 31st March 2009

  Sunny Clouds,
  
  So sorry that your condition has now been identified as something so unpleasant and potentially dangerous...you've probably already searched around but I'll give this ref. anyway...
  
  
  
  ...don't know how old (young?) you are but if a total hysterectomy is recommended then there must be good reasons...but you will be given a full explanation (and if not, pester til you get enough info to make your decision!).

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• Message 3

  , in reply to message 1.

  Posted by That Old Janx Spirit (U2140966) on Tuesday, 31st March 2009

  This seems to give some no-nonsense information:
  
  
  
  It seems that the likelihood of cancer is small.
  
  I was also recently told that something was wrong. The diagnosis was 'adnexal tumours'. Turns out now that what I have is a myoma and varicose veins on the outside of the womb. Treatment? Zilch. There are things that can be done but she's not suggesting any.
  
  But from November until recently I thought the very, very worst. I also thought I would have to have an operation and that they'd cut me open. A friend of mine recently had to have some things removed too (endometriosis and something else was her diagnosis). They did that via a laparoscopy. She said one cut down below was only about 1 cm big and the other cut near her belly button - she can't see it at all. She was out of the hospital on the same day. She said the most painful thing was the fact that they fill your stomach area with gas to inflate it to give them more room to move about it. That was all.
  
  So... the moral of the story is... don't panic. It will probably be less bad than you think it currently is.
  
  Chin up.

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• Message 4

  , in reply to message 3.

  Posted by Sunny Clouds (U7606212) on Tuesday, 31st March 2009

  Thanks, Amethyst and Dame Celia.
  
  I suppose I was a bit alarmed by the leaflet the hospital gave me about cancer. Internet sources seem to vary wildly in the info they give. Some put the risks of cancer as high as 20% but others say it's only that high if there are abnormalities.
  
  I'm just worried that if they can't get a biopsy they won't be able to know whether there are any abnormalities or not.
  
  It's all perfectly silly. This week, I've been dithering over having a tooth out as if it were an absolutely terrible thing to lose a tooth, yet I'm thinking "Oh just take my womb out and be done with it!" I don't think I'm being very rational about it all.

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• Message 5

  , in reply to message 4.

  Posted by Westsussexbird or Birdy aka Westie (U6316532) on Tuesday, 31st March 2009

  It's not silly Sunny ... I fight 'tooth and nail' to keep my teeth, but live perfectly happily without my womb which I wasn't in the least bit emotionally attached to.
  
  :0)

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• Message 6

  , in reply to message 4.

  Posted by amethy5t (U13830783) on Tuesday, 31st March 2009

  Sunny Clouds,
  
  No - there's nothing rational about our feelings when it comes to our health...we have to give ourselves time to consider the options from all angles.
  
  I don't go along with the saying 'too much information can be a bad thang' - give yourself some time to think thangs over, SC and don't be rushed into anythang that you may regret later...
  
  Just to say again - ask until you are satisfied that all your questions have been answered to YOUR satisfaction.
  
  X

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• Message 7

  , in reply to message 6.

  Posted by Sunny Clouds (U7606212) on Tuesday, 31st March 2009

  I was emotionally attached to my womb but it was rather pointless really. I was told about ten years ago that my bleeding was anovulatory but I kept thinking "maybe not every time". Time went by and I didn't have a partner, but then I realised I was coming close to menopause and felt left out when all my friends kept telling me all about their children and grandchildren.
  
  Then at Christmas I found I'm half way through menopause and thought "maybe if I hurry I could have a baby whilst I've still got some eggs left" but I don't have a partner, and it would be unwise for someone with my poor mental health to deliberately become a single parent. I still thought maybe...
  
  But the tests last week show that I have adhesions, so I wouldn't be able to get pregnant anyway, so it's too late to think "no, don't take my womb away, I might still be able to use it".
  
  And I sit here crying for what might have been, but I can't let my decisions for the future be based on what the future might have been if things were different.

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• Message 8

  , in reply to message 7.

  Posted by hunnybun (U7082446) on Tuesday, 31st March 2009

  I'm just 58.I had a late menopause, my last 'proper' period was Feb.'07. Then,without warning, another in Feb'08.And 'spotting' now and then ever since.
  I saw my doc. and she referred me to the gynae at the local hospital.I wasn't seen until May '08 when the gynae attempted a hysteroscopy in the outpatients clinic. No luck, she couldn't get into the neck of my womb.
  I've had 2 scans, 2 internal scans and finally in January this year I was admitted for a d&c and biopsy.General anaesthetic, night in hospital, and no, they still couldn't do it. 'But' the gynae's second in command told me 'we think you're probably OK, have another scan in 6 months and we'll see how you're doing'....I was speechless!And for me that's unusual. I just said that I didn't like the sound of 'probably' and she walked away..
  
  I went to see my doc and she wrote to the gynea and said 'thanks but no thanks' and referred me to another gynae, one who'd successfully 'done' a hysteroscopy on me about 4 years ago..Well, she tried again 2 weeks ago.She told me there had been no point in trying in the operating theatre as the camera there was larger than the one in O.P's.!She didn't manage it either! But I've got to go back this Friday, she will have 'A new piece of kit', a very slim camera with bi-opsy channel (to quote her), she's booked me a double session and says she will not be beaten! I still have no possible diagnosis but have been told that the lining of my womb is (or was last August) 10mm. thick on one side and 8 mm. on the other.Just to complicate matters I have a bi-cornuate uterus that tips backwards and the remains of a dividing septum....
  
  I've been boring poor old Tilly with this for the last year and just wish I could get it sorted...

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• Message 9

  , in reply to message 7.

  Posted by Westsussexbird or Birdy aka Westie (U6316532) on Tuesday, 31st March 2009

  Sunny, weeping for what might have been is to be expected and healthy and hopefully helpful. :0) Lots of words beginning with 'h' there .... difficult to say without your teeth in :0)))
  
  Perhaps now that you know your womb is useless to you it will be easier to move on to the next stage of your life and know that there isn't a darn thing you can do about the past, but there is a lot you can do about your future. You work really hard at your future and slowly but steadily you are building on success.
  
  I'm sorry you are having troubles with your body just now, but things will get sorted and you will be be strong again.
  
  Just take care of yourself in the meantime and that will speed up your recovery.
  
  with cyber love,
  
  Westie :0)
  
  
  Myn, I hope all goes well on Friday. :0)
  
  

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• Message 10

  , in reply to message 8.

  Posted by Sunny Clouds (U7606212) on Tuesday, 31st March 2009

  Gosh, Myn, and I thought I was going it with two failed biopsies! I hope they get a good one for you this time.
  
  

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• Message 11

  , in reply to message 10.

  Posted by hunnybun (U7082446) on Tuesday, 31st March 2009

  Sunny,we'll keep our fingers crossed for each other shall we?
  
  Cheers Westie, I will report back to this thread on Friday afternoon..
  
  Myn x.

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• Message 12

  , in reply to message 11.

  Posted by Westsussexbird or Birdy aka Westie (U6316532) on Tuesday, 31st March 2009

  Thanks Myn ... it will be good to hear how you got on.
  
  :0))

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• Message 13

  , in reply to message 12.

  Posted by hunnybun (U7082446) on Friday, 3rd April 2009

  Reporting back re:hysteroscopy/failed biopsy.
  
  My cervix seems to have 'done a runner'.There is no sign of it! I know I have one somewhere but today it has gone awol, it certainly isn't where it should be!The gynae tried for 45 minutes and couldn't find it..So no biopsy or investigation of thickening of my uterus.
  
  She has taken a sample of fluid (water used during exam. sorry to be so specific) and will have it investigated for cancerous cells which might just be present.I've got to have another scan and then it could be surgery if she (gynae) is at all concerned.
  
  Watch this space, as they say...
  
  Myn..

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• Message 14

  , in reply to message 13.

  Posted by Dunlurkin NL (U2675855) on Friday, 3rd April 2009

  Ooh er Myn.
  
  Not usually the sort of thing one can misplace. Did you tell the doc it would be in the last place she looked?
  
  Let's hope all is well and this is just another minor hiccup.
  
  Dunlurkin

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• Message 15

  , in reply to message 14.

  Posted by hunnybun (U7082446) on Friday, 3rd April 2009

  Thanks Dunlurkin, after being told the lump in my eyesocket was 'definitely' cancer (last year) and it turned out to be a cyst (which is re-growing by the way!), I just don't seem to be able to get myself at all worked up!
  
  My cervix was there a fortnight ago, we saw it on the screen in Out Patients...Apparently I have a lot of scarring caused by loop diathermy and cryotherapy which makes things more difficult and of course it all tips right back..Perhaps I could just make do with a few guy ropes.....

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• Message 16

  , in reply to message 1.

  Posted by Prof Pepita in Wonderland (U3101721) on Friday, 3rd April 2009

  Sunny Clouds- I am very sorry to hear of what you are going through. And I understand what you mean about being 'attached' to your womb etc. I have also had gynaecological problems, and strangely despite all the problems my own womb has caused me, I feel more 'attached' to it the older I get!
  My own experience is different and I'm sorry if it's not that relevant to your present situation. I started having terrible pain when I was 16/17 and was even rushed to hospital back then with suspected appendicitis. I stayed in hospital for 4/5 days, which seems unbelievable now, while I was poked and prodded and a diagnosis was sought. Maybe endometriosis hadn't been 'discovered' back then..
  I endured over 10 more years of sporadic agony where I'd take to my bed with very strong painkillers (Solpadeine). I saw various specialists - Polycystic Ovary Syndrome was suggested, but that wasn't it. Eventually a new GP referred me to St Thomas's in London and a scan and a laparoscopy later, I was booked in for an operation. (They could see there was something there but didn't know exactly what..) Looking back I was remarkably unruffled by it all- signing the consent form that might have meant me waking up with no 'bits' left. I was 30 and looking forward to a baby very soon (I hoped). I think I just felt very optimistic that all would be well and this was my chance to get it all sorted out once and for all..
  
  The op. revealed a large 'chocolate' (endometrial) cyst on one ovary and because it was the size of a tennis ball, the surgeon said he'd had to remove the ovary and one Fallopian tube too. But he assured me ovaries and tubes were like kidneys; you only need one, so I'd be fine. He advised me though to get on with having babies sooner rather than later, if I wanted them. So I did. I got married the following year and ended up with 3 babies, the last when I was 41, so the surgeon was right about only needing one ovary!
  
  Is your condition related to endometriosis? I had no more symptoms till last year when I started getting the awful pain off and on again. I've since had 3 scans- showing a large cyst on the remaining ovary which has now got shorter but not narrower. I think they also did a blood test recently which was to check re.cancer,and I heard no more, so presume it's ok. I am going to see my GP again to try to get more information. (The practise I'm at now is very big and they don't seem very good on one to one care and keeping you informed etc.)
  I'm sorry I can't give you any more advice or tell you any more relevant experience. All the best with this- I can reassure you that my major operation left only a tiny almost invisible bikini line scar, which I can't even see now. They can do a heck of a lot these days without leaving you with any sort of huge scars etc. (I was very slim back then though, which I think makes the surgeon's job easier..)(And a laparoscopy is just a tiny incision by your tummy button- mine left no mark I can see.)
  

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• Message 17

  , in reply to message 16.

  Posted by Sunny Clouds (U7606212) on Friday, 3rd April 2009

  Myn - what a thing to lose! I hope they get an adequate sample from the fluid to see if everything's ok.
  
  Pepita - endometrial hyperplasia is a thickening of the lining of the womb. It can develop into cancer, although how likely that is depends on whether there are any abnormal cells. If there are no abnormal cells, the risk is less than 2%, but if there are, the risk is around 20%. Of course, we're all individuals not statistics, so I want the reassurance that I'm ok.
  
  The thing I've found difficult about this is how drawn out the investigative process has been. I first went to my GP with symptoms before Christmas, and they're still trying to find out what's amiss. So far they've found menopause, hyperplasia, polyps and adhesions. One thing a month. Surely they must have almost run out of stuff to find?

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• Message 18

  , in reply to message 17.

  Posted by laReine-Astrid (U10636638) on Friday, 3rd April 2009

  Sunny
  
  I had a hysterctomy in 2005 because I was at risk of cervical cancer because of problems with HPV. Even though I was already 46 years old and had never wanted children, it was emotionally very difficult.
  
  But I knew I wasn't going to have children at that age, and I wanted the sword of Damocles lifted from my head.
  
  I was lucky in that I had a great surgeon, who said words to the effect that "I could take out your bladder and, physically, it would cause you far more problems, but emotionally, it would be easier."
  
  I certainly haven't regretted it since.
  
  
  

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• Message 19

  , in reply to message 18.

  Posted by Sunny Clouds (U7606212) on Friday, 3rd April 2009

  Thanks for showing me you understand, Astrid.

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• Message 20

  , in reply to message 19.

  Posted by laReine-Astrid (U10636638) on Friday, 3rd April 2009

  It's not easy, Sunny.
  
  I felt my choice had been taken away from me. But it was my choice, and i did fell better after.

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• Message 21

  , in reply to message 20.

  Posted by Sunny Clouds (U7606212) on Saturday, 4th April 2009

  How to communicate about gynaecological matters - I should have read this before starting this thread...
  
  

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• Message 22

  , in reply to message 21.

  Posted by hunnybun (U7082446) on Saturday, 4th April 2009

  That made me chuckle Sunny.
  
  Perhaps you could start a thread about the various names we coyly use for our 'lady bits'..
  
  Try not to worry too much, easier said than done I know, but chin up, shoulders down, chest out, stiff upper lip and all that...I've just explained to MrMyn,in glorious technicolour everything that's been going on 'down below'...
  
  Myn

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• Message 23

  , in reply to message 22.

  Posted by Prof Pepita in Wonderland (U3101721) on Saturday, 4th April 2009

  Yes- I realized today that on the last thread I referred to my 'Eustachian' tube being removed along with my ovary..That would've been a bit of an unusual op., considering the Eustachian tube is the one that 'links the pharynx to the middle ear'- that one that collects catarrh etc., not that other tube connected to your ovary...the Fallopian one. Oops!
  (Either no experts in physiology here, or people are too polite, since no one pulled me up on that howler.)

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• Message 24

  , in reply to message 23.

  Posted by Retired-Rural-Person (U8479978) on Saturday, 4th April 2009

  Sat, 04 Apr 2009 12:22 GMT, in reply to Pepita Ocho in message 23
  
  It was obvious that was written under stress, Pepita, it would have been unkind to point it out, but now you have done so we can giggle about it along with Sunny's wonderful link.
  Sorry to hear you have yet another problem to deal with, Sunny, hope it gets sorted out sooner rather than later, life measured out in spaces between medical appointments can get tedious, don't it?
  Retired

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