Only option is hysterectomy ( total pelvic clear out).... Help!!!

Hi girls,

I was diagnosed with endometriosis in 2005 after an incidental finding of a cyst on my left ovary for which I had a laparotomy and ovarian cystectomy. I had no symptoms at the time but for the past 4 years have been continuously in and out of hospital with severe pain. I have had about 4-5 laparoscopies for drainage of cysts etc but am still in agony. I was referred to an endometriosis specialist in September last year and she was planning surgery to remove endo. I have not had any children yet as have been trying but it's not happening. Following a recent MRI, my consultant has today informed me that the endo is so severe that it is deep in my bowel and all over my uterus. The only option is hysterectomy but even then I could end up with a colostomy.

I haven't had children yet n desperately want a family but am stuck between having the op and losing all chances of having children or living in pain all the time. I am on super strong analgesics including oramorph and even then am still in pain at times.

Please advise....

12 Replies

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  • Aaaaaa, I'm sorry to hear about this Hun.

    I hope you get some respite soon, I have a love hate relationship with oramorth, it helps somewhat with the pain but at the same time gives me crazy constipation which causes more pain, I know what you mean taking strong pain killers to no effect..

    I don't think it's good for them to offer a hysterectomy when you still want children and have non yet, I really feel where your coming from.

    Thing is hysterectomy will not stop the pain and possibly not the endo. And I have no idea why anyone suggest this when so many women still complain post hysterectomy.

    Anyways have you asked to see a different gyna do you see and endo gyna expert, when its bad not any gyna will do and not all endo gyna docs are good. My first endo gyna told me I could not possibly have endo! Joker! Only to have stage 4 with classical symptoms! I had to get 5 opinions before someone knew what they were doing!! We are not all straight forward.

    Pain is the Bain of my life!

    Can they not get it off your uterus, a highly skilled endo gyna could, then give you zoladex or something to shrink it, and them give you I've straight after coming off the hormone suppressant? I read other have to had to take contraception type until ready for IVF to slow down and shrink endo.

    Not sure about the bowel, please try get a second opinion, research online for the best, and you can ask the NHS to send you, they don't have to but depends on circumstances it can happen.

    Have you ever tried diet changes, just asking due to the recurrent cysts. I hope your under pain clinic, they are sometimes helpful in working with gyna to offer better quality of life.

    I hope very much for you to have some ease in your health. Xx

  • Hi Nadz

    I apologise in advance for the rant I am about to go on, but this makes me SO mad under normal circumstances I am premenstrual today - hysterectomy does not cure endometriosis. It just doesn't. If you have endo on your bowel, how will removing your uterus and ovaries help? Also, as you say, you run the very real risk of ending up with new problems as a result of the huge surgery. So you end up with no womb, which is irreversible, surgery related problems which also might be irreversible, a sudden-onset menopause with all of the problems that presents, and then the symptoms of said menopause. For which they will offer you HRT. Which will set off the endo again. What will the 'solution' be then?

    I understand your dilemma, I really do. There have been days when I have wished I could be amputated from the waist down; only pethidine comes close to hitting my pain. And I know that for ladies with adenomyosis or endo confined to the uterus (although once it's in the tissue, it's in and could have spread invisibly so even this isn't certain) hysterectomy is the treatment of choice. But for somebody who clearly still desperately wants children and whose endo is more complicated, hysterectomy shouldn't even be being offered as an option.

    Before you do anything drastic, you need to get a second opinion - was the consultant who told you that hysterectomy is the only option the same one you saw in September? Have you had Zoladex or Prostap injections yet?

    C xxx

  • was just about to have a rant too then realised the lovely chrissie had just said it all so i'm just gunna count to 10 !!Hysterectomy did not cure my endo !

  • Thank you ladies... This was my 5th gynaecologist that I've been under n none of them have managed to sort me out. I was apparently discussed in an MDT meeting (multi disciplinary team) and it was the opinion of all the experts that this is the best way forward for me.

    I'm really struggling physically and psychologically at the moment x

  • You poor thing, I'm not surprised :(

    Can I be rude and ask how old you are?

    C xxx

  • I'm 31

  • Then you are far too young to have a hysterectomy for endometriosis. You'd have to have HRT for years and years; as your endo is aggressive is would almost certainly come back.

    How did they cyst draining go? How are you feeling after that?

    I like your attitude :) Look into that gastric band, or even join WeightWatchers, and focus your energy on that. As you say, once your weight is down, you can then go towards IVF. Look at it all as a process that you're starting RIGHT NOW :)

    Good luck, and lots of love

    C xxx

  • Please don't allow them to do it. I've had 11 operations part of my bowel removed an ovary a fallopian tube a lot more removednot got alot left on my left hand side of my body and im still in pain, im 36 and been living with this since I started my period, I have no children and got told in November there's a 1% chance I will fall pregnant naturally, and 20% chance through IVF but that 20% chance is something im willing to take on, im on drugs 24/7 have been for over 10 years but I refuse to have a hysterectomy as children is my 1 hope going through all this.

    If you really want children stand your ground and do what YOU want to do not what they think is best for you.

    Senga x

  • Hi Nadz,

    I'm not going to repeat Chrissie... instead I will just say NOOOOOO!!!

    I'm 28, with Stage 4 endo EVERYWHERE all my "lady bits" are in a mess stuck to my bowel and bladder. I was offered a hysterectomy and initially said yes, but after going away and thinking about it (by thinking I, of course mean crying like a baby in bed for a few days) I decided not to go ahead. The risk of needing a colostomy and the fact that I am desperate for a baby made me adament not to give up.

    I have seen 5 gynaecologists and they all have had different ideas on how to 'manage me', but Zoladex has been fantastic in terms of giving me some respite from it and allowing me to be pain free (the vast majority of time).

    My advice is-

    Educate yourself as much as possible, read every article you can find, talk to people 'who know Endo'

    Question your consultants, GPs etc

    and do what YOU want

    Sending loads of love

    Cheryl xx

  • Thank you all. Sorry it took me a while to get back on, had the cyst drained on Friday via CT scan just to relieve some of the pain. I'm only 31 but have a huge BMI of 49. I'm considering maybe going for a gastric band so some of the weight comes off, then maybe I will b eligible for IVF.

    Thank you all, you've given me the determination and reassurance that I shouldn't go ahead with the hysterectomy.

  • Google a consultant called Mr trehan. He is a miracle worker with endo and has helped many women in your situation. He will not perform a hysterectomy on someone who wishes to have children but does his best to preserve fertility. I am 45 and have a 19 year old. Have suffered with endo fibroids and my bowel bladder and uterus were one large mass with major blood vessels involved. I had a keyhole hysterectomy with radical excisions of all endo on the 17th of December 2012. Went home the nest day and back to work on the 7th. The surgery took 9 hours and i have never felt better. My only regret is that I didn't find Mr Trehan when i was in my 30s as i might have been able to have more children. Good luck and hope it all works out

  • Thank you. Fingers crossed I get sorted soon xxx

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