2 clear Laps and a clear MRI, booked in for full hysterectomy next month

Hi

This is my 3rd post, following my previous blog about having my second Lap last month.

Had my follow up appointment yesterday, and my gyny consultant said that it is more than likely to be Adenomyosis and suggested i have a hysterectomy.

I am thankful that i finally have a diagnosis after a long and hard battle, but when you hear the words come out of their mouth and they are telling you you're only option is to have one of the biggest operation a woman could have, it hard to get your head around and I am finding it hard to come to terms of it.

Dont get me wrong I am so relieved that all of my pain, tiredness, upset to my family life and marriage I know it it the right decision

Can anyone out there help me and support me with advice (i think im going to need it!)

I know there are a lot of you out there and in a similar position.

Thank you ladies

Sarah xx

12 Replies

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  • Hi Sarah, I am having my 2nd lap on the 22nd after years of struggling which has gotten drabatically worse after I had my daughter 2 years ago. Adenomyosis was originally suggested to me before I became pregnant and ive had every treatment option going, since Being pregnant i have had the mirena coil but to little avail. I asked the consultant for a hysterectomy as I just can't cope but because I'm 28 she just dismissed it basically but I know that's my only option if it is adeno, however I have no idea how I would feel if they actually said that they would do it. It's a massive thing as you say, but a lot of good can come from it and you can start to get your life back.

    Stay positive xxx

  • Oh and have a look at hystersisters website for some excellent advice and support :) xxx

  • There's not a lot I can say to advise you but I can empathise because I'm in the exact same position. After 5 laps in an 8 year period diagnosis and treatment of endo, removal of cysts an adhesions my most recent one in July left me with the same diagnosis of adenonyosis. Unfortunately I've been having huge problems since Julys op and on a follow up with a different surgeon I was told I need a hysterectomy.....and just like you I was gobsmacked it's a huge combination of emotions from downright fear of the surgery to elation at the thought that this could all be over!!! So I just want to send you my love and say your not on your own and what your feeling is completely normal (although folk tell me I've never been normal lol).

    I hope that it all goes smoothly for you xx

  • Are you having a hysterectomy? do you have a date if so? xx

  • I go back to gynae on 15/12 to get it booked I need to see the gastrointestinal surgeons and get my MRI results before then to see what's gone wrong with the op then it's all systems go...in all honesty I'm being big and brave up front but am dreading it lol x

  • I know its a big step isnt it, i have been told it will be next month so at least i dont have too long to worry about it!!

    the recovery time worries me, with 3 kids its going to be pretty tough! x

  • Hi, I just replied to you on my blog post before I had read yours. It is a really difficult decision to make. Will you have hrt afterwards? I was told I would need to because of my age (39).if you have adenomyosis rather than endo it should work as it will all be removed. I am going to try excision and hysterectomy at the same time as I think that gives the best chance of removing everything that is causing a problem. Some women say it's the best thing they ever did. Please post to say how you get on x

  • Hi, thank you for your post, can you tell me what excision is??? i dont think that has been mentioned to me.

    its all gone a bit manic here, they had cancelled my opp from 22nd nov untill jan/feb unless i took 20th december date. My consultant rang me today and asked if i can make it next week, she is going to try and do it laparscopry, which i cant seeing be able to do due to the nature of my andenomyosis. Have my pre opp on thursday so hopfully will find out more.

    My ovaires are being left behind, but people i have spoken to in the medical proffession have said thats not a good idea! xx

  • Hi smartyq, how are you getting on? I was told today that it looks like hysterectomy is going to be the best thing for me as I've tried it all. As you know, my emotions are all over the place and I'm quite shocked even though I knew this was going to happen. And I am desperate to feel normal and not tired and in pain day in and day out. Please let me know how you got on. Take care x

  • sorry, I've not checked my post recently my opp was brought forward to I'm 3 weeks post opp today!!!!

    Like you have said, you know it's got to be done but being told your having it done, and when your sitting in the hospital waiting to go down that's when it becomes real!!!

    To be fair, the opp it's self (I had laprasopic hyst) wasn't so bad, for me it was the care afterwards of the nurses which has left me and my recovery longer!

    Do you have an idea of when it will be?

    Xxx

  • bump

  • Hi smartyq, thank you for replying to my message. Below I'll add my post on here just to give you an idea of my situation.

    Hiya all. Going to try cut a long story short and ask please if anyone has had the same experience or any advice for me please. I had horrendous bleeding for years since a teenager (I am 37 now) until 3 years ago when I had an Endometrial Ablation (novasure procedure) prior to this they tried giving me all sorts of pill, coil, implant etc to help with the bleeding and pain. None of these helped so ended up giving me EA and not too long after this, did they do a laprascopy to check if I had endometriosis. Which to me seemed back to front but anyways, it came back clear. I started spotting end of last year, which I don't have a problem with seen as I haven't had any periods since EA. But then start of the year my pain started up again. It's just gotten worse. It seems to happen every 2 weeks or so where I have pain under my belly button, left side lower abdomen, also to the right, horrendous back ache, breasts sore, the mood swings well not good at all, I'm tired all the time but also don't sleep well, I wee alot more at these times, I go to the toilet at least 5 times a day with loose stools but not exactly as loose as diarrhea, I'm also bloated and extremely windy and yuk yuk yuk. (apologise for the crude truth) I'm on antidepressants since December which I find has helped me not be as anxious as I was but still. I was also diagnosed with IBS many years ago and keep been told all these symptoms is just IBS. Now after wanting to have this suffering end and to start feeling human again I'm desperate for answers. Or is this all in my head. Also my iron level is usually on the low side. Hoping I've added all I can to help someone give me some light to my situation please please please please.

    Following this I saw the gynae last Wednesday and he wants me to have another lap and hysterscopy to see what exactly is going on but he thinks it's endo. Then he said he suggests I have zoladex(or whatever it's called) for a bit and if it works then I can be refferred for a hysterectomy. I had made a diary up for him of pain etc and my history to help my situation. As my hubby is in the army and we are living in Gibraltar right now so I get to see a gynae that comes out here once every 6 months and any procedures done I have to fly back to the UK for, yes I know it's madness. But what else do I do hey. Anyways, I did say to him that I suspect it's adenomyosis. I am secretely hoping it is because then if I have the hyst it will keep me pain free and if it's endo I have more of a chance of it coming back.

    So sorry for the long story but any advice or info you have would be so appreciated please.

    Angie xx

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