Hysterectomy and bleeding on prostap

Hi im seriously worried as I've been put on prostap and have had my third injection 2 weeks ago I had no bleeding prior but this third one I've had large clots and heavy bleeding the past three days..even when I'm showering or bathing it's coming out of me..has this happened to anyone else? Also im on waiting list for hysterectomy after 22 years of continuous bleeding different treatments nothing seems to work I've had three laps and my last one was November 14 by June 15 I was back to square one and now I'm on prostap. I've been on zoladex before , I've had the mirena coil in as well and my body rejected that..so would anyone know if on waiting list for hysterectomy if I went private would they do this quicker. .This has not been an overnight decision..seven years I've asked for this and I know it doesn't cure endo but I'm at the end of my tether..I feel I've no life my marriage ended..I don't want children which for past seven years I've told them this..I want to move to a different country and start a new..I just want a life like im sure the rest of you do..im so sick of feeling pain

15 Replies

oldestnewest
  • You sound like your struggling, you poor thing, I'm sure if you went private their woukd snap your hand off, but it won't be cheap, I only waiting 4 months from lap to hysterectomy, I had mine for adenomyosis, unfortunately I'm still in ENdo pain, unles you have full excision also, it's likly to make not a lot of differance to your pain symtoms, about from the bleeding, and that would be a blessing, sounds like you are still child bearing age, so they should leave ovaries where they belong,

    Have you been seeing an Endo specialist, I wasn't, and truely believe if I had been I would be in a different situation now,

    I hope you find some releif, xxx

  • It sounds like your having a really bad time x big hugs x I had almost constant bleeding and it really gets you down with the pain and it's exhausting just trying to get through living with this disease and finding the best treatment to help you. We are all very different what brings some help. I didn't get a diagnosis until mine had reached stage 4 and my life had ground to a stop trying to cope with the pain and bleeding. Not sure if going private would speed things up. Have you tried phoning your consultants secretary and telling them how much you are suffering and get some help and advice? Just wanted to send you a hug and hope things improve soon for you x

  • i would recommend chasing up the secretary too. but make sure it is a bsge consultant you are seeing and that they excise any endo at the same time. x x

  • I keep being told that my consultant is an endo specialist but I think he has many gynae things he specialises in so I think it would be derry..I've had him.seven years now and I feel I'm no further on...I phoned his secretary and I got that I'm on list for vaginal hysterectomy and the waiting times are up to 14 months...so I actually emailed my consultant to see..I'm going also tomorrow to see a private consultant which is ridiculous but I feel I need a second opinion..like yourselves im just fed up and feel no one cares...so thank you for the hugs..hopefully 2016 will be a better one :) xxx

  • Have a look on the BSGE list, is your consultant on there, if he isn't then he only has an interest in endo and is not a specialist. Surgeons have to complete a 2 year extensive excision course to become a specialist, and then work under a BSGE centre,

    Xx

  • No he isn't on it I had a wee look there it seems only one place and that's in another hospital I kind of thought that because you know and I know our own bodies it wasn't until he did my first lap that he actually believed there was something wrong with me after telling him for ages the pain and bleeding wasn't normal and here we are 7 years on and still no further on. .but thank you for your help and kind words it just makes you feel your not alone xxx

  • Go back to your GP, and demand a referral to a specialist, otherwise, he could do your hysterectomy while

    1: you might not need one, as a specialist could do a full excision job and you could be out of pain,

    2: you could have hysterectomy by this genral gyne and still need another excision surgery has he might miss some endo

    Has he said that he will excise all endo whilst doing hyst,

    If I could go back in time I would go to specialist and know you are getting the best possible surgeon,

    Please do this and save yourself time, more operations, more pain

    Xxx

    Message me direct if you want any details

    Xxx

  • I seen private consultant today he said the endo will be removed as well as hysterectomy..He is the only one who has actually listened to me over the years and I've seen private doctors before I am going to a counsellor as well and I won't be having it for 3-4 months

  • Xxxx

  • Hi Caroline,

    That's great that he listened, makes a huge difference,

    I with you every luck,

    Happy new year

  • Hi Caroline 81

    Like u even I feel same,had my 2 cyst removed from my left side in March felt better for 2 month the all the pain returned,was prescribed provera pills,was pain free for 2 months then started to bleed,gyn did the scanning found fibroids and my endometrial linning gone thick done biopsy it has been 7 weeks,no results called GP to ask they said the consultant have to do the biopsy again and my follow up appointment is on 6 January,finger cross don't understand what to do,I have made my working hours less,I'm always in pain have to take pain killers after every 6 hrs, iam really fed up,every time I have to cancel my plans ,as we get lots of visitors during holiday I have to keep on telling them don't come as I am feeling tired and in pain.

    People around me think I am unnecessary exaggerating but I know how I feel like,these pain killers have given me tummy upset and I get burning sensation when I poo,I only wish that my pain disappear.

  • HI Tasnim I totally understand where you are coming from..so big hugs to you..its the worst feeling you feel you have no life I Constantly having to cancel plans..my marriage was ruined and you feel no one is listening or they are like here she goes again moaning about being in pain or cancelling plans..I've narrowed my friends down to two as others don't even bother asking me now..but have you joined any support groups..There is one in a hospital here that I'm hoping to get to in new year..least then you are meeting up with people the same..I really hope it all goes okay on 6th..keep me posted and I'm here anytime to chat xxx

  • Thnx Caroline,no I have not joined any groups,which hospital u go to? I live in Leicester.

  • I'm in Belfast living..If you go on to endom uk own website they have a list of support groups..If there is one maybe it would do you good..im going to go to one in belfast xxxx

  • Thnx,Caroline and happy new year.

You may also like...