How do I convince a gynaecologist to perform a hysterectomy?

Apologies for the long post, but I am in a very bad way.

I have been diagnosed with endo for 12 years and had 3 laparoscopies and every medication imaginable. Nothing provides any relief whatsoever, and in fact mot make it worse. I am allergic to silicone and can't use the mirena. The only treatment I will consider at this point is the complete removal of my entire reproductive system. The trouble is that I cannot get any gyn to take me seriously. They all say I need to try all treatments over and over again until something works.

Every time I mention pain I get a sermon about how endo pain is nothing compared to having a baby and therefore not serious, and that having a baby would put my "discomfort" into perspective and thus diminish the endo problems. When I bring up how endo has affected work, I get told to live on benefits. With relationships, I get told that I do not need them. The only thing that gyns seem to care about is retaining my theoretical ability to have children. I am completely incapable of sex because I bleed 90% of the time and the rest of the time have absolutely no natural discharge whatsoever. I am allergic to all lubricants because of the silicone issue. If I mention this I get told to use donated sperm to get pregnant, which will surely cure everything, and that pain during sex is just preparation for having a baby.

I am 34 and in the UK. I have no children and don't want any. Apart from anything else, I wouldn't be able to care for them. My endo is definitely hereditary and I do not want to pass it on. If I bring this up with a gyn, I get told to abort all female fetuses.

10 Replies

  • Hi it's so sad to read ur post but u r not on ur own. I too went through the same thing and I had already had my two children I did eventually get a hysterectomy but was told that it may not help

  • The hysterectomy did help for about 12 months and it's good coz u don't have heavy bleeding all the time but plz take into account that it will not be contained anymore (which is wot I was told before hand but decided it was worth the chance coz I was so desperate ) I am living in nz now and still the pain is everyday most doctors I feel think we are making this out to be more than wot it is which in turn makes me feel very frustrated and for the record I didn't feel childbirth at all lol wish I cud be writing a more positive post sorry but u do find a way through :) I have just found out my beautiful 15 year old has endo too feeling so guilty right now

  • I would keep pestering them or c someone else coz my endo pain is worse than when I was in labour. Only had paracetamol in labour I'm on morphine for endo. So don't take no for an answer. My gyne has been ok nothing like zoladex n tht has worked f me. I got the menopausal symptoms really bad but bled constantly. I had a lap 5 wks ago t c how bad it is and he has now discussed hysterectomy with me n I'm only just 28. Hope u get sorted out soon . Just remember a hysterectomy isn't a cure it like everything else try it n hopefully it works but if it doesn't it cnt b reversed like the hormone treatments. Good luck keep us posted.

  • Doctors sometimes are really obtuse ignoring the high level of pain we go through and the impossibility of living a decent quality of life. I am personally thinking about asking for the same procedure and reading your comments is not very encouraging. On the other hand I also read in a few places that the procedure might not help the pain go away and this is the saddest thing.

    In your position I would consider changing GP and see other specialists in other clinics and maybe they will have a different approach. I personally an considering in going back to spain or italy to get a check up because I don't trust UK doctors and the quality of care they give very much disappointed me.

  • Where in the UK do you live?

    Firstly I would slap whoever told you to 'abort female fetuses' That is disgusting. Secondly, I like you have suffered with endo for over a decade and I had a child and in no way, shape or form did this cure it and I would rather go through a hundred 28hour labours than live with endo.

    I saw a private consultant through the nhs right to choose who was under no illusion I needed a hysterectomy even at 32. He was appalled that after prostap, zolodex and every other drug known to man I wasn't offered surgery on the NHS.

    My best advice is to ask for a referral. And I would also suggest changing GPs xx

  • Ask for a referral to UCLH , the UK centre for endometriosis. They have been great! I have had lots of surgery and scars all over my belly to prove it but they now have me pain controlled

  • I am shocked at how your gynae has responded, if I was spoken to like that, I wouldn't be held responsible for my actions. If I were you, I'd just keep pushing and go to a different gynae!! I am only 17/18 years old and wanting a hysterectomy. I can't bear the pain and I swear its worse than childbirth at times. As soon as I've had my first child I'm getting that stupid thing out, its done nothing but cause trouble and pain for me so I dint ser the point in it staying put for any longer than needed.

    I hope you get somewhere eventually, good luck.

    Leya :) xx

  • So upset to hear how badly you have been treated - definitely make an official complaint to Nhs about gynae.What he said is unethical and totally ignorant.I presume he has gone through labour ha ha! I have had 2 c sections,but did have labours and enormous postop pain and all I can say is that ,like others my endo pain is 100x worse than even the pain after a sectionWhen I had my sections I had post op pethidene and it worked very well..Refuse to see this gynae again -just explain that you are initiating a complaints procedure.I am in Scotland,which may be different but check out how to complain.

  • Ooops-something went wrong there! Was sayimg that after sections had post op pethidene and this worked.Recently when in hospital with cyst,kidney infection,pethidene did nothing at all.

    If you are lucky enough to live near an endo specialist centre,they may be more sympathetic.Unfortunately this is not possible for many of us and it is shocking to hear so many people are suffering so much -especially if you do not actually want children! Can understand if ladies do ,but the right to choose not to have children is just as valid and gynae should honour that.We would not let animals suffer like this! Sorry,a real rant.

    You are not alone and ladies here will help and let you express your feelings.

  • I am so upset for you and how you have been treated - I do hope you will find a different gynaecologist to go and that you can make a complaint. I hope you get the care and treatment you need. Hugs..

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